PEN Blog Archives

Cyber Hygiene – Peer Support in the Age of Surveillance Capitalism

Unless you’re a visitor from another planet, you’ve probably seen or heard some news about the internet being a giant privacy sinkhole. Between the stories that first started to break in the Cambridge Analytica/Brexit aftermath, and the ongoing drip-drip-drip that is the “my phone is a snitch” stuff that seems to bring fresh scary headlines every day, it feels like anyone who has a social media presence of any kind has had their privacy violated in some way.

It’s tempting to just say, “who cares – I don’t do anything that anyone else cares about,” but that’s not really the case if you participate in online patient communities, particularly those that gather on social media platforms like Twitter and Facebook. The issue is particularly problematic for patient communities dealing with health issues that could impact their health insurance coverage, or their employment status, or even their lives, if the details of their health status were widely or publicly known.

An example of that risk could be someone who’s gay, but who works for an employer that has a public profile of being anti-LGBTQ. Someone in that situation, who participates in a Closed Facebook Group for people looking to share experiences on getting access to pre-exposure prophylaxis (PrEP) medications to prevent HIV transmission, might think that a Closed Facebook Group would be a safe place to have those conversations, but Closed Groups – which were promoted by Facebook to community moderators as private community building tools – were subject to the same data privacy breach risk that the rest of Facebook became. Which means that a gay man in a Closed Group that serves as a community space for discussion of access to HIV preventive treatment could be outed to their anti-LGBTQ employer via data leakage from that “private” group … which was not really private at all.

There is rising awareness, and concern, in patient communities about this privacy issue, particularly related to Facebook Groups, which became the de facto place to establish peer health communities over the last decade. An advocacy group called The Light Collective is looking to build a safe harbor for patient groups to build community without sacrificing members’ privacy, but until that harbor is built, what’s a patient community to do? And what about just-plain-people, the ones called “patients” – what’s their path to privacy in the surveillance age?

Here are my suggestions for enhancing your privacy online:

The internet is a boon to humanity when it comes to access to information, and democratization of knowledge. However, along with access to information, we’ve also gotten disinformation, trolls, and cyber-surveillance at scale. Peer to peer communities, particularly in healthcare, are critical to accessing good information, and emotional support when dealing with serious illness. However, data privacy is not guaranteed in any way on social media platforms. Caveat emptor – let the user beware. And modify their settings accordingly.

Complete Guide To Mindfulness

Suja JohnkuttyHi there ! I’m Suja Johnkutty, MD a conscientious mom and neurologist . My one simple goal is to provide you honest, practical, simple action steps to experience better relaxation in your life.

Fact or Fiction? Lung Cancer Symptoms, Side Effects & Treatment

Fact or Fiction? Lung Cancer Symptoms, Side Effects & Treatment from Patient Empowerment Network on Vimeo.

When it comes to lung cancer information you find online, how do you decipher fact from fiction? Dr. Martin Edelman, a renowned lung cancer expert and researcher, shares his insight and expertise on symptoms, side effects and treatments for lung cancer.

Dr. Martin J. Edelman is Chair of the Department of Hematology/Oncology and Deputy Director for Clinical Research at Fox Chase Cancer Center. More about this expert here.

Related Programs:

How Do We Increase Precision Medicine’s Reach in Lung Cancer?

Lung Cancer Resources

The Empowered Lung Cancer Thriver and Expert Chat



Welcome to Fact or Fiction: Lung Cancer Symptoms, Side Effects, and Treatment.

Today, we’ll debunk common misconceptions about lung cancer symptoms, side effects, and treatment. I’m Patricia Murphy, your host for today. Joining us is Dr. Martin Edelman. Dr. Edelman, why don’t you introduce yourself.

Dr. Edelman:              

So, I’m a medical oncologist. I’m the Chair of the Department of Hematology/Oncology and Deputy Director for Clinical Research at the Fox Chase Cancer Center in Philadelphia, Pennsylvania.


And before we get started, we should say this program is not a substitute for medical advice. Please refer to your healthcare team with any questions.

Let’s start with an overview of lung cancer’s research. Can you tell us a little bit about the field right now?

Dr. Edelman:              

So, I think the field has been remarkable over the last few years. There’s been more progress, more drugs, more things that have happened in the last five years than probably the prior 50. It’s been an amazing time both for developments in microbiology as well as in immunotherapy of the disease, which is exciting for all concerned.

For patient’s, of course – really a promise of longer, better lives, even cures where we previously did not see any in advanced disease. For the scientists – an amazing amount of new information. And for clinicians and clinical investigators – just almost too many questions for us to answer.


It sounds like the field is really advancing quickly. What do you attribute that to?

Dr. Edelman:              

Well, you know, I think there are a number of things. Everybody always talks about breakthroughs, but breakthroughs really happen after decades of other work. And what’s happening now is really a result of many, many years of different types of work. There were our colleagues in immunology who built this area of cancer immunology for many years – I have to say with much skepticism from many, myself included.

The advances in molecular biology – our abilities to do things with tumors to determine genetics at a rate and a pace and a cost that was previously unimaginable. All of these things have developed in the last few years but really are a result of the decades of work before that. If you look at immunotherapy – probably one of our biggest areas of progress – the roots of that are a century old. So, nothing’s really new. It’s just now we have the technology and the ability to really use it. And then I would also say that we’ve created the infrastructure that lets us test this – the people who have done the studies, the endpoints for the studies, the expertise in doing clinical trials – that also was there for decades, and we frequently were kind of ridiculed at times.

Oh, you’re just testing this drug against that drug, but the reality is is it was those incremental advances. It was the ability to know the endpoints, to refine the populations, to develop the infrastructure that allowed for all of this to happen.


How is genetic testing changing the landscape?

Dr. Edelman:

So, genetic testing – and in this case the testing of the tumor, not the germline, not the individual – has been very, very crucial. If you go back about 20 years ago, there was a family of drugs called epidermal growth factor receptor inhibitors or EGFR inhibitors.

And the basic science at the time made it look like these would be best combined with chemotherapy in squamous cell carcinoma. And as it turned out, combined with chemotherapy they weren’t very useful. But as single agents, there were these occasional very dramatic results.

So, that came at a time when we were able to evaluate tumor DNA, sequence it with some degree of ease at a reasonable cost. So, there was a discovery of specific mutations, which were targeted by these drugs. So, it was sort of interesting in that it was the clinical observation that led to the discoveries in biology, not really the other way around.

But then that in turn resulted in looking for other mutations, which were found, and then the development of other drugs – in some cases, the repurposing of other drugs for those. And now we have about a half a dozen very validated targets, each one of which in a small slice of the population – between say 1 percent and 5 percent – 10 percent of the lung cancer population – but these – if the patient has within their cancer that particular mutation, these are drugs that are 80 percent-plus effective and frequently can be administered with relatively little toxicity.

And usually they’ll give them benefit for one-plus years or more. So, that’s been an example of progress there.


How does lung cancer generally present in people? What might someone notice?

Dr. Edelman:

So, when I teach my residents how do people show up, which is, of course, very different for me – they usually show up with the diagnosis in hand. But for somebody who’s a primary care physician, what are you going to see? Well, you could see symptoms at the site of the origin of the disease – in the lungs. So, the pneumonia that doesn’t go away, the cough that doesn’t go away, the chest pain. So, that’s one way that it can present. It can also present, unfortunately, all too frequently as advanced or metastatic disease where the tumor has spread to other organs in the body, such as bone or brain. So, you may have a pain or a fracture, seizure, headache. Those are all possibilities.

And then sometimes the tumor can secrete various factors. We see this particularly in small cell lung cancer where there are certain metabolic syndromes that can develop or neurologic syndromes as a result of hormones or antibodies that the tumor can secrete. These are called paraneoplastic syndromes.

And then tumors sometimes show up and increasingly so now that screening has been validated, and screening in lung cancer is every good if not superior to screening in breast cancer. There’s a common myth that it doesn’t work. But in fact, this has been now demonstrated in multiple randomized trials done in the United States, in Europe that clearly demonstrate improved outcomes for patients who are at risk who undergo screening exams with low-dose CT.

So, frequently, we see those patients and then again sometimes just incidental discoveries when somebody’s getting a scan for another reason. So, those are all the ways that it can present.


So, it sounds like we’re very good at getting people to doctors like yourself who can specialize in their disease once it’s diagnosed.

How are you approaching treatment decisions with your patients?

Dr. Edelman:              

Well, the treatment decisions that we make – that I make are those that are in ways similar to other medical oncologists. It really depends because some of the patients may first go to a surgeon or whatever. However they come into the system, there are a few key factors in this. First is – make your decision based upon, Number 1, which kind of lung cancer. So, there are two major varieties. You have small cell and non-small cell, and they are treated – they are biologically distinct, and they are treated in distinct ways.

And then the next major consideration is the stage of the tumor, which is our way of expressing how advanced that is and deciding on both the therapy as well as conveying a prognosis and evaluating a patient for a clinical trial. And that’s based upon the size and location of the tumor; presence, absence, and location of lymph nodes; and the presence or absence and, these days, the number of metastatic areas of disease.

And then, lastly, and again depending a little bit upon the stage and interacting with all the others is what condition is the patient in? Anybody can get lung cancer, but still the median is in older individuals. Many of these patients have compromised cardiac and pulmonary status as well as other diseases of aging, hypertension, cardiac disease, etcetera. Those people – one obviously has to tailor one’s treatments to fit those comorbidities. So, that’s sort of how the basic assessment – obviously, some patients show up with metastatic disease. We know that, but we go through a whole process for this.

The staging system that we use is complicated, and it keeps changing. We’re, gosh, up to version eight of this? I started with version three. I’m not quite sure I’ve fully mastered the current one, and the ninth edition is coming soon. And why does it keep changing? Because our knowledge of the disease keeps changing. The database keeps expanding.

We’re able to be more refined. Molecular variables have not yet fully entered into our considerations. Unquestionably, they will. But basically, one could consider lung cancer – despite the four major stages and multiple substages – that you really have three buckets that people will fit into. They have localized disease, which we will predominantly address with a localized therapy – surgery, radiation. And many of those patients, however, particularly those who might have a lymph node that’s positive, will benefit from chemotherapy to prevent recurrence.

We have patients with locally advanced disease. Primarily, those are patients who have lymph nodes located in the middle of the chest as opposed to more localized disease where if there’s a lymph node present it’s more in the lobe of the lung. Those patients with lymph nodes in the middle of the chest or larger tumors are approached with frequently a combination of chemotherapy, radiation, sometimes surgery.

And then we have patients with advanced disease who will be predominantly treated with drug therapies, which nowadays, depending upon the molecular background of the tumor, could be a targeted treatment if they have a specific mutation.

Something we see most frequently, though certainly not exclusively, in patients with scant or no smoking history, they may be approached with immunotherapy or chemotherapy combined with immunotherapy.

And there are many considerations that go into those decisions. And even in advanced stage, there are certainly roles for surgery and radiation depending upon whether there are structural abnormalities, occasionally whether there are relatively few areas or several areas of metastatic disease. And in the localized and locally advanced disease, our goal is cure in those, though we certainly are not there for every patient yet.

And in advanced disease, it’s extension of life, which is now quite considerable compared to untreated disease. And I think in certain situations, particularly those who only have a single area of metastatic disease, curative treatment is a realistic possibility. And even those with more disseminated disease, we’re now beginning to see a substantial fraction of patients who are still alive at five years or more. So, we’re beginning very cautiously to think that perhaps some of those patients may even be cured of their disease, though I’m not quite ready to say that.


Well, it sounds, though, like there is a lot of reason to have hope if you are diagnosed with lung cancer, especially if it’s diagnosed early. Of course, that would not stop a patient from worrying.

So, I hope what we can do next is talk a little bit about some of the things we’ve heard patients say, and you can fact-check us on that.

Dr. Edelman:              



This sounds like a real worrier. There are no new treatments in lung cancer.

Dr. Edelman:

Well, there’s nothing but new treatments in lung cancer. So, I’ve been involved in oncology, I think – let’s see. My fellowship was in the late 80s. That ended about 1990, so we’re about – what is it not quite 30 years later? Virtually every drug that I use was in development during my professional career. Just within the last few years, all the immunotherapeutic agents were developed. Within the last say 48 months, they were licensed. The targeted drugs are all new within the last 15 years or so. So, we’re pretty much nothing but new drugs in lung cancer.

And not just drugs, but also surgical techniques have proceeded from open thoracotomies in almost all patients to video-assisted thoracoscopic surgery, which is less morbid and gets the patient out of the hospital faster.

Radiation progressed from relatively low intensity radiation that was done where you drew it on x-ray. I can still remember that when I was a resident to now four-dimensional assessments and the use of intensity-modulated radiotherapy.

Perhaps a role – maybe, maybe not – for proton therapy in this situation; the use of stereotactic body radiotherapy for treatment of localized disease in patients who are medically unfit – I think we’re nothing but new therapies.

Our supportive care is massively better than it was 30 years ago. Nausea and vomiting, severe problems – it’s largely a thing of the past. We have extremely effective antinausea agents. I may disappoint some people by telling you that marijuana is not one of them. But the fact is is that many of those drugs were developed because the drugs 20 years ago, 30 years ago, were quite nausea producing. And it was heavily lung cancer folks across the country – my colleagues, Dr. Brower, Dr. Gandara, Dr. Einhorn, others – who are very involved in lung cancer, genitourinary malignancies, gynecologic malignancies, but we’re using what’s termed highly emetogenic chemotherapy. We developed many of the antinausea drugs. We were extremely concerned about this.

So, our drugs are better. They’re more active. They’re less toxic. We have better supportive care. We have better integration with other modalities, such as radiation and surgery.

There are still many, many questions with treatment. Many areas we can improve. Many things we don’t know, but it’s nothing but new therapies.


Your history as a physician and noticing all this change will likely help you advise patients who worry that their lung cancer diagnosis is a death sentence, which is something else that we hear from patients.

Dr. Edelman:              

So, life is a death sentence. It’s a little bit flippant, but I think that there are many, many bad diseases out there. And certainly, there is no good lung cancer. And I don’t want anybody to leave this and think – oh, everything’s rosy. It’s not. Though I do a lot of administration these days, I’m still in clinic. I see a fair number of patients, and the news is not always good. Not everybody responds. Not everybody benefits. And that’s why we still need to do the trials and advance what we’re doing both in terms of increasing the efficacy and decreasing side effects.

Having said that, we have many, many patients who are living excellent productive lives, able to make life events – anniversaries, birthdays, etcetera – who would not have otherwise been alive to do that. And as I said, there is an increasing fraction of cured patients where the disease is no longer at all an issue. But it’s one of those things – we don’t know until we try. And there is no shortage of bad things that can happen to people. Lung cancer is one of them. I think what we do have is increasing options for people that truly meaningfully improve their lives.


Sure. Here’s one I hadn’t heard until just now. Surgery causes lung cancer to spread.

Dr. Edelman:              

Yeah, that’s common in certain states. When I was in Maryland that was a biggie.

So, there’s a myth that the air gets to the tumor, and then it spreads. But that’s certainly not true. It certainly is possible that in a bad surgical procedure that disease can be spread, but I think historically what that was was in the days before we had as accurate of radiographic studies. So, it’s kinda interesting. I always say, “I’m not that old, and I began medical school before there were CT scans.” So, the way you would diagnose something was with a chest x-ray. That was your best chest imaging. And the brain you’d image with something called a pneumoencephalogram, which is – you don’t know what that is. Most people don’t, and they should be thankful for that. But we had no real way of knowing these things. So, what would happen is there would be a surgical exploration. They would say, “Well, it looks very localized.” But then you’d go in, and there was lots of disease all over the place.

And for the most part, that doesn’t happen anymore. Now we have CT/PET scans. We have MRIs. Patients before they go to surgery usually have had – our pulmonary physicians will usually have sampled the nodes in the middle of the chest, the mediastinum. So, it isn’t that there aren’t surprises, but there are far fewer. And certainly, a properly done operation should not spread lung cancer. I would emphasize the properly done operation. It is my strong belief that nobody should have surgery for lung cancer from other than a board certified thoracic surgeon who spends their time thinking about lung cancer, preferably in an institution with a fair volume of this.

We know – it should be no surprise to people, practice makes perfect. People who really focus in an area – people at the NCI-Designated Cancer Centers, comprehensive cancer centers – who do a lot of this have greater expertise.


How about this one? Treatment is not effective in older patients.

Dr. Edelman:              

Treatment is highly effective in older patients. It’s interesting. So, we had long arguments about, when I started in this field, whether treatment ever worked, and there were a number of studies that showed that chemotherapy – that one platinum was better – what’s called a platinum-based agent – was better than no therapy.

And then that two drugs were better than one drug. And people would say, “Oh, well, that doesn’t work in the elderly. And they should only get one drug.” And that’s because, I guess, their burning bush on the lawn told them this. And the fact is is that then got evaluated in a controlled trial, a very nicely done study by my European colleagues. But what was crucial was that they used somewhat lower doses of chemotherapy, a little bit different schedule of chemotherapy, and it was clearly superior to a single agent. And those were even days before immunotherapeutics and these targeted agents. So, many patients will benefit. You just have to be aware of certain basic principles in geriatric medicine as well as basic principles of lung cancer care.

So, first off, if the patient is elderly but their tumor is characterized by a driver mutation, they get one of the so-called targeted agents. And these are these days very non-toxic, easy to take, and highly effective.

Patients – many are going to be eligible for immunotherapy either as a single agent or combined with chemotherapy. Chemotherapy drugs could certainly be cut in their doses and still preserve much activity and be done safely.

I had a woman with small cell lung cancer. This is now about a year and a half ago or so. And she’s in her 80s. And she came to me because she was told – oh, just sorta get your affairs in order. And her disease was what we term an extensive small cell. The staging system’s a little bit different, but she didn’t have a really vast bulk of disease. And we treated her with standard chemotherapy drugs but at somewhat lower doses and some careful TLC and some other supportive things like growth factors.

She got all of her treatment on an outpatient basis, had an excellent response. We used radiation later to consolidate her treatment, and I see her back every couple of months. I wouldn’t say that she’s necessarily cured of her disease, but she does yoga every day. She lives a full life. She sees her grandchildren. And she’s, I think – I wanna say 83-84 years old. I think she’s quite grateful for that. It’s not the numerical age.

The flipside is if somebody’s 50 years old and they’re extremely ill when they come in, then one has to be very cautious about what one does. We used to say that those patients who come in who are severely impaired should simply get supportive care and hospice services.

And actually, how would I put it? Our lives have gotten a little bit more difficult lately because as things have gotten better for patients – because I can’t necessarily say that as much because some patients may be very susceptible to the effects of – their disease may be very susceptible to the effects of immunotherapy. I had one patient who was a younger gentleman who was on a gurney. He was in his 50s, lost an enormous amount of weight , he was on oxygen. We immediately gave him fluids. My fellow – I had an excellent fellow at the time – came to me and said, “Should we admit him and send him to hospice? Or just send him to hospice?” And I looked, and he had a biomarker that indicated that he might have an excellent response to immunotherapy, so we gave him solely immunotherapy and saw him back a few days later. He was still pretty touch and go. We gave him some fluids. A week after that – still, we were kinda touch and go, but he was still with us.

And then a week after that my medical assistant, comes in, and she says, “You know, he looks a little bit better today.” And he was in a wheelchair that day. And then a few weeks after that, he had a walker, and a few weeks after that a cane and about a year after that was asking me about whether or not he could go on a cruise. Again, I still see this gentleman – a couple weeks ago. It’s now almost two years later. And the question now that we have is – should we stop his treatment? And he is restored to complete full health, has had almost no side effects of treatment.

So again, this is not every patient. Some people will be treated and get every side effect and no benefit, but I think I’ve become a lot more reluctant to say that any patient should not at least be offered the opportunity for treatment knowing what the potential side effects are. And there still are considerable and sometimes severe side effects from therapy.


Yeah. And again, your experience and your long perspective on this disease can help you advise your patients thoughtfully. Here’s the last one that I have on my list here. Clinical trials are experimental and risky.

Dr. Edelman:              

Yeah. Well, so is the rest of life. So, there generally – is there risk? Yes. Essentially, every patient is always a trial because we for the most part don’t – even in the disease states where we have very active treatment – so, let’s say – for example, we were talking about the EGFR mutation. So, we have excellent drugs. We have a drug now, osimertinib – outstanding drug, easy to take, low risk of side effects.

The earlier generations – there was a lot of rash, diarrhea. That’s been pretty much done away with. But on average, patients benefit from this drug for about a year and a half.

So, that’s not great if you’re 40 or 50 years old. You want to do better. So, what are our current studies? Well, we’re looking – we’re re-addressing a question that we thought had been answered, but really it wasn’t – about, well, what’s the value of chemotherapy plus this drug? What about the value of other drugs?

So, we can’t promise anybody anything, but our current treatments are still not good enough. There are certain diseases, let’s say Hodgkin’s disease, where you know you’re gonna cure almost all the patients up front or testicular cancer, etcetera, where – again, but thanks to trials, clinical trials, we now are at that stage. We’re not there yet in lung cancer, and the reality is is every patient should really be on a study. I think it’s – and we have this problem now in that our studies have also become far more complicated to enter people in because there are many more variables one has to look at it. What’s the molecular background of the tumor? How many prior therapies?

The condition of the patient, their organ function, etcetera – and the regulatory burden has become much, much greater. But clinical patients are in clinical trials. Let’s look at the question. Are they risky? Well, everything is risky, but we do a lot to manage that risk. Patients who are in studies are observed more closely. We have to. It’s the law. There’s frequently additional personnel assigned. They’re usually getting standard of care plus a new treatment or a new treatment followed by the standard of care or some variation of that.

They’re observed, like I said, much more carefully than we would otherwise. And so, I think actually patients on trials generally will do better, and we actually have evidence. Multiple individuals have looked at this – everything from first-in-man trials or early dose escalation studies, controlled studies – that show that patients, even those on the control arm, generally do better than similar types of patients who are not treated on studies because we just are more careful.

And the physician who participates in trials is generally someone who has a greater knowledge of the disease.


Sure. What do you notice from your patients? What do they tell you that you think needs to be debunked?

Dr. Edelman:              

Well, very similar to some of the questions that you’ve asked. I mean we address these issues all the time about – is there hope with this? How bad is it gonna be, etcetera? Sometimes people think that inevitable diagnosis is gonna have pain and misery, etcetera, or a lot of admissions. I spend a lot of time particularly in their first visit addressing many of the questions that they may have.

And again, there’s always this problematic balance with the disease, particularly in the advanced setting in particular, where one has to balance out what is, I think, an increasingly positive picture with the reality that still the vast majority of patients will ultimately die of their disease, but the question is – how long can we put that off? How can we improve quality and quantity of life, even if one is going to ultimately die of the disease?

I think those are the things – there’s this weird dichotomy that people come to believe in that either you get treated and you’re gonna always have symptoms or your life will be pleasant and wonderful, and you’ll have this quiet wonderful peaceful demise if you’re not treated. And it’s really not true. The disease can be extremely uncomfortable, painful, distressing, etcetera. And treatment puts that off. Treatment prevents symptoms. Treatment improves quality of life.

And it takes a little bit of time because that’s how people are very socialized with this. Not every drug causes hair loss. Not every drug results in nausea. There’s too much misinformation out there.


Sure. Sure. Treatment can arrest the disease or slow down the progression of the disease, but it also has side effects.

Let’s talk a little bit about some of the concerns that patients have about the side effects. Let’s see: Side effects are unavoidable.

Dr. Edelman:

Well, that’s not true. As I said, what were the side effects? If you go back a couple decades and you ask patients what were they concerned about, many of them were concerned about nausea and vomiting. And that is largely a thing of the past. Many patients will still have some queasiness with treatment, but even our most nausea-producing drugs – we really do have outstanding drugs for the prevention of that. You have to use them. You have to take them.

It’s very important to give them appropriately. There are very excellent guidelines that are out there. Sometimes, patients are still undertreated, no question about that. Not every drug has industry strong backing. There’s one drug – for example, olanzapine, (Zyprexa) was actually developed as an antipsychotic, and I always tell the patients, “No, I don’t think you’re crazy.”

But it’s at a lower dose, and we have excellent, excellent evidence that that drug given for a few evenings after chemotherapy is extraordinarily effective along with the other drugs in preventing nausea and vomiting. So, that’s one thing.

Hair loss is still somewhat inevitable with certain drugs – the taxanes. But many of our regimens don’t cause hair loss.

Or as I tell folks – only you and your hairdresser will know for sure because its hair on the pillow, but the average person won’t pick you out of a crowd. Those are big concerns still. There still are potentially life-threatening effects from chemotherapy, and we spend a lot of time educating people about that. But those are not inevitable, and it’s actually a minority of patients in lung cancer.

One should not confuse – there are different malignancies. Still, the treatments for say leukemia, though even that’s changing, can be extraordinarily toxic or the bone marrow transplant patients. Many, not just lung cancer, but in the other diseases as well – many of the things that people attribute to the drugs are more due to the disease. So, I always say, “The greatest failure and side effects to the drugs are they don’t work well enough because the side effects of the disease can be considerable.” So, that’s the bigger issue. The immunotherapeutic drugs have a rather interesting set of side effects.

They are clearly initially or frequently better tolerated than the older cytotoxics, which still have an extremely valuable place in the treatment and cure of lung cancer. The immunotherapeutics have clearly been quite beneficial, but their side effects can be subtle and far less predictable and can be very severe. Virtually, any organ in the body can be affected by this. We like to say, “If it ends in ‘itis,’ you can get it from immunotherapeutics.”

So, there are lots of side effects, no question. But they can be managed. They can be prevented. They can be treated. Sometimes, we have to abandon a drug. So, people who get severe – what we call immunotherapy-related adverse events – may not be able to continue on their drugs. But even that is not necessarily always the case.


This next one really gets to the heart of the doctor-patient relationship.

I shouldn’t share my side effects with my healthcare team because I don’t want them to stop my treatment routine.

Dr. Edelman:

Well, you can’t prevent the side effects if you don’t know about them. And I always would tell patients, I said, “You know, if you’re having a problem, please don’t call me at 4:00 on Friday afternoon. I’m gonna end up sending you to the emergency room, which I may anyway.” But a lot of times, we can solve certain things over the phone. There are a lot of side effects that can be treated and particularly if one is aware early on. So, yeah, you should share the side effects because how’s somebody gonna know how to deal with them?

Now, the problem we run into sometimes is in a population that’s on average 60s and 70s, could be younger. There’re lots of things that can be just part of ordinary life. Everybody gets headaches, back pain, etcetera, etcetera.

We have to treat those sometimes and evaluate them much more aggressively because of the possibility of them being related to disease or drug, but it helps to sort it out. You can’t be too blasé about it because sometimes things need to be looked at very urgently, particularly with immunotherapeutic drugs. Some of the side effects that can be severe can sometimes be very subtle in their onset.


What else to patients talk to you about? What kinds of things do they come in and talk about that may need to be debunked or that you need to correct?

Dr. Edelman:

Well, it’s not contagious. It’s not hereditary, things like that. Many people – I’ll ask always about asbestos. And they’ll say, “Well, I worked in this old building that had asbestos in it.” Well, that doesn’t count, particularly one of the rarer – we’re not really talking about it today, but mesothelioma, which is associated with asbestos.

You know you gotta actually really be exposed, which means that somebody has to have torn into that. The latency is 30-40 years, so it’s the pipefitters; but actually, the most common cancer associated with asbestos is non-small cell lung cancer. It’s not mesothelioma. There are lots of those sorts of things. But in general, many of the questions you’ve raised are quite common questions.


As a patient, how can I differentiate between symptoms of lung cancer versus the effect of treatment? What should I be thinking about as a patient?

Dr. Edelman:              

It’s not always easy. And again, that’s why you gotta discuss it, and it’s not always easy for me to determine that because there are always several possibilities. It could be a side effect of treatment, it could be a side effect of disease, or it could be a side effect of people’s comorbidities. And these frequently interact. So, a patient – anemia is a common problem where you have low red blood cells.

Well, we know that you get anemia from disease. That causes a degree of what’s called anemia of chronic disease.

Our drugs frequently can result in anemia, and then anemia can bring out other symptoms. Patients who have lung and heart dysfunction to start with are gonna have more problems. They may get angina. So, there’re a lot of these things that interplay. And it’s not always straightforward.


And Dr. Google can really get involved here.

Dr. Edelman:              

Yeah. That’s always a problem, yeah.


Yeah. Which brings us to our next section – myths about lung cancer in general. How about this one? All lung cancer is the same.

Dr. Edelman:              

Well, I think by now one should be clear that not only is it not the same but even what we used to term – as I said, my life as a clinical investigator used to be a lot easier because we had non-small cell lung cancer. We had a particular stage.

And now we have EGFR mutated. We have non-small cell lung cancer that occurs in people without a driver mutation. And then, well, do they have something called PD-L1 expression? Which if it’s high, predicts for benefit from immunotherapy alone; and if not, then chemotherapy and immunotherapy is kind of the way to go in patients who are reasonable for that. We have patients who may have an EGFR mutation and then, which kind of EGFR mutation? Patients without mutations, ROS, RET, cMet. It goes on and on and on and on.

And all of these are different in small-cell lung cancer and then stage of disease. And even within the stages, there are all sorts of subtleties in terms of the optimal treatment. So, it really is a team decision for many of these patients how to treat them. And like I said, there are an increasing number of options.

And the answers are not always clear or perfect.


Right. How about this one? Lung cancer only affects the lungs.

Dr. Edelman:

Well, obviously, lung cancer can spread and kinda goes wherever it wants. There is essentially no organ in the body – I’ve had patients who were referred to me as “lung cancer” – rather who initially showed up with a breast mass and were seen by breast cancer physicians. They would biopsy it, and it was clearly lung cancer that had metastasized to the breast. Lung cancer can go to the eye then go to the brain, the skin, the adrenal glands, the liver. It’s a disease that unfortunately likes to travel and metastasize in the body very early in its natural history. In other words, when you say early in late lung cancer that’s not necessarily a time. It’s really low stage and high stage. You can see a lung cancer that can be a rather small tumor in the lung that may have already spread elsewhere in the body. 


Right. Right. How about this one? Supplements will help with symptoms and side effects.

Dr. Edelman:

Not likely, and more likely the other way around. So, as I said, we have some very good ways of preventing things like nausea and vomiting. There’s a lot of advice that is quite reasonable in terms of dealing with side effects – staying well hydrated. Hydration means salt-containing fluids – chicken soup, of course, being just about perfect or Pedialyte. Things like that are very good. But exercise is extremely good.

The problem with supplements is nobody really knows what’s in those. Many things can interact with various drugs. The term nutraceutical to me is nonsense. They’re unregulated drugs. And what do I mean by that? Many substances and many foods metabolize through the liver or influence enzymes in the liver. Many of our drugs are processed through the liver.

Drugs can influence – so, a drug that might inhibit the metabolism of a chemotherapy or a targeted drug will increase the body’s exposure to that. That can increase the side effects. Or alternatively, it can accelerate the processing of the drug, which will decrease the efficacy. I’ve seen this on many occasions.

One should think that much of the population is on anticholesterol drugs, cholesterol-lowering drugs called statins. Well, if you – I’m sure anyone who does it – you look at the bottle or you got the advice from the physician that says, “Don’t have it with grapefruit juice.” So, let’s think about that. If grapefruit juice can substantially increase the side effects from a very commonly utilized drug like a statin, just think about what an unknown thing that you bought – and remember, everything you buy at these stores – that so-called supplement – you have no idea what’s in it. There’re no standards for these.

The FDA is not really checking on those. I believe a few years ago the New York State Attorney General looked at this and found out a lot of these supplements were sawdust or weren’t what they say they were. So, I’m very – I would strongly discourage the use of anything outside of what’s actually a prescribed medication. If one wants to use an alternative therapy, like yoga, massage, image therapy, and again exercise, things that we know really work with people – absolutely, do that. But I would discourage these herbal medication supplements, etcetera. Or if you insist upon it, definitely tell your physician because then when they’re dealing with the side effects, it helps them to figure out what it was.


Yeah. Discussing what you’re taking or what you would hope to take with your physician and your care team is probably paramount.

Let’s talk a little bit about health literacy. What would you suggest patients use for online resources? What are good resources?

Dr. Edelman:              

So, there are some excellent resources. The International Association for the Study of Lung Cancer has resources for patients. The National Coalition of Comprehensive Cancer Center Network (NCCN) has resources. American Society of Clinical Oncology has resources. So, those or American Cancer Society. So, there are some really reliable sources out there. And there’s a great deal that’s very unreliable – people’s Facebook pages. I’ve seen this.


It’s a big place.

Dr. Edelman:              

Everybody always – and I think it’s important for people to understand. There will be people who will get something and have a fantastic response. I’ve used anecdotes.

The anecdotes I’ve used are to illustrate the potential hope of benefit. They’re not exceptions to the rule anymore. They’re the good case scenarios. I could have just as many anecdotes of people who didn’t benefit and stuff. And I think it is important going into this – and that’s why we are reassessing patients constantly and getting repeat scans because we don’t necessarily know always – even if something’s 90 percent effective, it means 10 percent of the time it’s not.

And each patient – we’re getting better at individualizing and personalizing therapy, but we’re not perfect yet. And we probably never will be. So, there will always be anecdotes. I think what’s – as a friend of mine puts it – the plural of anecdotes is not data. When I say, “Well, chemoimmunotherapy works.” It’s not because I have anecdotes of that, though anecdotes illustrate the magnitude of benefit.

I have data that shows that the chemoimmunotherapy regimen was compared to chemotherapy and was clearly and unequivocally superior. When I give a statistic that 60 percent of patients, 65 percent, can benefit from those types of regimens. That’s based upon prospective randomized control trials.


Dr. Edelman, as a researcher in the field, tell us why you’re hopeful about lung cancer research.

Dr. Edelman:              

Well, I think that we have gone from trials with very small incremental improvements and frequently a very slow degree of progress where if we had a positive study every two or three years, we were thrilled – to the point where we’ve had an avalanche of positive studies. I don’t think my younger colleagues know what a negative trial looks like anymore. Even our negative trials are pretty impressive. We’ve had studies where an immunotherapy agent was compared with chemotherapy. And it was designed to show that the drug would be better.

And it was just as good, and that was a negative study. That’s the correct interpretation, but still I would point out that that’s quite remarkable because these other drugs had taken us 25-30 years to develop. And now we have another drug with a very different mechanism of action that’s as good potentially. That’s impressive. I think we’ve just had an amazing degree of progress in the last few years. We have far more drugs. We understand far more about the disease – the technology at every point from diagnosis to assessment of response to the ability to evaluate better what we’re not doing well. So, our studies now frequently have biopsies before, during, and after treatment in a way of trying to figure out why is stuff working or not working.

Back in 2006 or so, I proposed a study. We ended up doing it, but it took two or three years because we were requiring a biopsy result – actually, not even a new biopsy but just an archived specimen from the original biopsy to determine eligibility, and there was strong pushback that we would never be able to do that. And now, we routinely are getting biopsies and re-biopsying, and that’s over a brief period of time.

So, we’re getting to get better understanding of the disease, and why stuff works and doesn’t work. And I think that that’s why our progress will accelerate. And I would again emphasize progress only happens – real progress – only through clinical trials. We’ve cured a lot of mice for many decades. A mouse is not a person. You actually have to do the studies patient by patient, and I think we are making substantial progress. We almost have too many things to test right now.


That’s a good problem to have. Dr. Edelman, thanks so much for taking the time today.

Dr. Edelman:              

You’re welcome. My pleasure.


And thank you to all of our partners. To learn more about lung cancer and to access tools to help you become a proactive patient, visit That’s powerful patients with an S .org. I’m Patricia Murphy, your host. Thanks. 

How to Make a Treatment Decision

Myeloma Patient Cafe®

Myeloma Patient Cafe® – How to Make a Treatment Decision from Patient Empowerment Network on Vimeo.

Five myeloma patients from around the country sat down to discuss their disease and how to make the best treatment decision for them.

See More From the The Myeloma Patient Cafe®



Hello everyone and welcome to the Patient Empowerment Network’s Myeloma Patient Café. My name is Cindy Chmielewski, and I’ll be hosting the program today. I was diagnosed with multiple myeloma way back in 2008. The Myeloma Patient Café is an opportunity for myeloma patients to get together and discuss their disease and also to share tips and information about myeloma.

Today’s topic is going to be how to make a treatment decision. But before we get into that discussion, I think it’ll be nice if we all go around and take a few minutes to introduce ourselves. We could say our name, where we’re from, and just a short history of our treatment journey. I’ll go first.

As you know, my name is Cindy. And I’m from Lawrenceville, New Jersey, and I was diagnosed with multiple myeloma back in 2008. When I was diagnosed, my myeloma was really tricky to begin with. My induction therapy stopped working for me just after a few cycles, and a stem cell transplant failed to put my myeloma into remission. So, I was very, very scared back then, and I retired from teaching.

But fortunately, a combination therapy was able to put my myeloma in what’s called a very good partial remission. But it took almost three years to get that maximum response. And right now, I’m staying in that very good partial remission with maintenance therapy.


I was diagnosed in 2013 after having MGUS in 2009 and smoldering myeloma in 2010. My initial treatment was part of a clinical trial, and I had Revlimid, Velcade, and dex for three cycles, then a stem cell transplant, and then two more cycles of RVD and then maintenance therapy on Revlimid until 2018. I was really fortunate. I went into stringent complete remission and MRD negative. But then in July 2018, I began to relapse. So, I’ve started another treatment with Elotuzumab, Revlimid, and dex, and that’s been working pretty well recently.


Good. Thanks for that introduction. And Alan, would you like to share a little bit about your story?


Sure, I was diagnosed in 2016. I was very far along, and the myeloma was very advanced. And when I was first diagnosed, I was put in the hospital and nearly died in the hospital because of some pain meds they gave me. It just shut down my digestive system. But anyway, everything happened really fast because it was so advanced. I really didn’t have much time to make decisions. We found it because my L5 vertebra had collapsed. I found out I had fractures in every vertebra, clusters of fractures in my ribs, 147 lesions on my bones, and 60 percent of the cells in my marrow were cancerous.

Like I said, it was so advanced I really didn’t have much time to make plans, but I went through two rounds of VDT-PACE. I went to a myeloma clinic that specialized in multiple myeloma. I did two rounds of VDT-PACE, then tandem stem cell transplants, then 16 rounds of Darzalex or daratumumab. Then they told me I was in remission and then went on maintenance treatments. I did Ninlaro and dex and – oh, Revlimid. That’s what it was. I did that for about seven or eight months. And my blood counts were just staying so low that they finally took me off that. My white count would never get over about 1.5 to 2. So, then I went back on the Darzalex, and that’s what I’m on now. I’m in stringent remission.


Good to hear that. You had some journey there. And Connie, can you tell us a little about your story?


I was diagnosed January 3rd of 2010 after I fractured my sternum in a race. A gal was pacing me, and I thought I had a sports injury and just had too much fun sprinting. But it took about nine months before they finally realized that I’d fractured my sternum that day, and then I got diagnosed with the multiple myeloma.


And Josine, how about you?


Hi. I was diagnosed actually five years ago this past month, Columbus Day weekend 2014, with 32 compressed fractures in my spine and my ribs from – I thought it was from lifting a box of legal documents at work in Manhattan, but it wasn’t. It was the myeloma pushing out because I had – 95 percent of the plasma cells were cancerous. Fast forward three months later I had a stem cell transplant, never went into remission. I’m on a triplet now of Revlimid, Ninlaro, and dex, and it brought my M-spike down to 0.2, which when I started out, I was at 8.0. So, life is good.


So, now let’s talk about how we make treatment decisions. And Mike, I’m gonna go back to you. When you were in smoldering myeloma, you had that opportunity to either watch and wait or to go on a clinical trial. What made you decide clinical trial? What was part of that decision-making process?


When I was in smoldering myeloma, I wasn’t really offered a clinical trial. It was when things switched from smoldering to active myeloma. And what made me decide to do the clinical trial is a couple of things. One, my background is that I am a scientist, an engineer. So, I’ve been interested in the science behind treating multiple myeloma and other cancers and wanting to do my little part to try to help advance the science through participating in a clinical trial. So, that was one factor.

The second factor is that I felt like I’d get really good treatment period, but I’d get the very best treatment if I was in a clinical trial. And it turns out that I was monitored much more frequently while I was in the clinical trial than I would’ve been otherwise. And that ended up over time giving me, I think, some peace of mind. So, I’m really glad that I did participate in the clinical trial.


Good. Anyone else participate in a clinical trial or had that option brought up to them? No?


I did not.


No. Did your doctors ever ask if you were interested? Or was that never brought to your attention?


It was never brought to my attention.


Josine, did the doctor ever ask you?


No, no. I would definitely be up for it, but it never came up in conversation.


How about you Connie?


My numbers are very, very gradually going up like myeloma likes to do. And so, we have – looking ahead to a relapse at some point, my specialist brought up clinical trials and that we could discuss them and look them over and decide at that point.


Good. And while I’m talking to you, I think I read in your biography that you chose not to go ahead and have a stem cell transplant. Is that correct?


That’s correct.


And can you talk about – a little bit why – what went through your head to make that decision?


I think at that particular time the result of quality of life or overall length of life were very similar in terms of whether you had a stem cell transplant or in my case with standard risk myeloma. And I might at that time could’ve – everything that we had talked about and looked at with the research – maybe buy six more months of overall life – of survival. And I have to admit I was a little bit skeptical about – I guess I’d say killing off your immune system and how that might come back or not come back. And with standard risk, I decided to go up to Mayo Clinic and have them collect my stem cells as an insurance policy of sorts and then see how my myeloma progressed.


And at that time, were you in a complete remission when you were making the choice of whether or not to have a stem cell transplant?


No, I wasn’t. I know the standard of care, and that was explained to me – was to have a stem cell transplant. But when I looked at the numbers with my specialist and my local oncologist, Revlimid was seeing some very good results. So, it really looked very similar to me. I thought with a deeper response up front we might get an overall better response, but I decided to – at my age – just to see how it would progress.


And that’s why this is such a crazy disease because everyone has a different presentation and yeah. And, I think, Alan, you were a little bit different. You had double transplants? Was that tandem transplants?


That’s correct, about 60 days apart.


Can you talk about how you decided and why you decided to have such an aggressive line of therapy?


Well, I think part of it comes to my personality type. I’m a business owner, and I’ve been fairly successful in life by surrounding myself with people that know way more than I do and letting them do their jobs. As I said in the beginning, things happened so fast with us we didn’t have much time to make decisions. And we were sent to a myeloma center. They specialize in multiple myeloma, and I feel like it’s probably the best in the world. But, of course, I guess everybody feels that way about where they’re treated, but my doctor was one of the top people in the world that specialized in multiple myeloma. He’s a clinical research scientist. And he told me how bad it was, and he said we’ve gotta treat it aggressively. But if we do, we feel like we can get you in remission.

And, you know, I really – when I first met him, he introduced himself by his first name, and I liked him, and I trusted him. And I had done a little bit of research on him, and I had just decided to do what he said. And it really made it – in many ways, it was easier for me because my situation was so bad that – and I know there are people that have had way worse than I have. But it was urgent that we make decisions. I didn’t really have a lot of time to think about it. So, I just surrounded myself with really good people and did what they said.

Probably the only decision I’ve really had to make is between my first transplant and my second. And like I said, they were only about 60 days apart. I did really well recovering from my first transplant. They released me to go home 14 days after my transplant, which they said was fairly unusual. The day I got home, I got C. diff And I was brutally ill, and then I got the flu. And then I got C. diff, and then I got the flu again. So, basically out of a two-month break, I was sick for a month.


Oh my gosh.


And when I went back, he told me – he said, “Look, I know you’ve had a hard time. So, we can go one of three ways. Your test results were very good, so we can either let you go home for a couple weeks to recover.” Of course, he knew I had to run a business too while I was going through all that. And he said, “Or, we can do a reduced dose of melphalan, or we can just give you the full dose.” And I’m an idiot, and I said just give me the full dose. So, that also says a lot about my personality card.

But anyway – so, I don’t have any regrets. It’s taken me a long time to get back on feet, but I live a pretty normal life. About four or five weeks after I got home from my second stem cell transplant, I made arrangements to continue a family tradition of going fishing with my dad and my sons in South Louisiana. And I looked like a ghost honestly, but I’ve forced myself to do a lot of things I didn’t feel like doing so that I could recover.


Josine, can you talk about your initial treatment and if you were part of that decision-making process?




I know that initial treatment shocks us, and many of us are really, really sick. So, we’re really not part of it, but talk a little bit about your experience.


Yeah. I was totally out of it at that point when I was first diagnosed because I was on morphine for 10 days, and I lost 10 days of my life. So, I never had anyone say that I had this cancer or discuss any treatments me. So, I was at their mercy. They gave me bendamustine and CyBorD – no. Yeah, CyBorD and bendamustine in the hospital. And I had, like I said, no recollection of any of it at all. My husband was there to make all those decisions at that time.


So, now, unfortunately, we have myeloma. And myeloma is one of those diseases of relapse and remission right now, although I’m very hopeful that we’ll be curing some people very soon. No one’s saying that they have a cure for myeloma. So, there’s a possibility that we will relapse in the future. Hopefully, the really, really, really distant future, but there’s that possibility. So, when we’re thinking about treatments, what do you think are some of the things that you consider when making that treatment option?


In my case, Cindy, last year – last July, my oncologist gave me eight different options. And we went through the list, the pros and cons of each of those eight options, and finally together decided on the Elotuzumab, Revlimid, and dex. And it was very important to me to sort of understand what his thinking was and why he liked this option versus that option and so forth. Part of it had to do with how effective we thought things would be given my myeloma and my history with myeloma. Part of it had to do with side effects that we wanted to avoid. I have peripheral neuropathy left over from Velcade. So, that sort of ruled out Velcade. But anyway, it’s great that we had so many different options to be able to choose from. I’m fortunate enough to be in that position now. And it made me feel good to be able to go through those options one by one with my myeloma specialist.


Some of the things you considered is what your specialist was thinking, why he picked a treatment; but you also considered some side effects from previous treatments when selecting your new treatment, which makes a lot of sense. If you already had neuropathy, trying a treatment that is known to cause neuropathy might not be the best choice.




Yes. Anybody else – things that they considered in the past when making a treatment decision or think they would be considering in the future for future treatment decisions?


I had to make the decision about going on maintenance. And I have a lot of friends with multiple myeloma, and some of them chose not to do maintenance. I guess, once again, it goes to my personality type. The first thing I asked my specialist was, “If you were me, what would you do?” Nobody knows better than he does. And why would you do that. And he told me, and then the other side of it is – going back to my personality, I’m more likely to do the most aggressive thing to go ahead and get it over with. And that’s kind of why I decided I should finish my maintenance. They originally scheduled three years of maintenance for me. And I should finish that in January or February of next year.


So, it was trusting your specialist but asking why he chose that treatment.


That’s correct.


But your personality is – go for the gusto there.


Yes. And the other side of it is that right now I’m an 18-year-old in the body of a 70-year-old. I’m actually 52, but I figure I can handle the more aggressive treatments right now than maybe I could 10 years from now. I’ve got kids. I’ve got a grandson. And I figure if it means me doing the most aggressive things so I can be with them longer, I don’t mind doing that.


And Connie, I think one of your considerations was quality of life. I heard you talk about quality of life when you made that decision about not having your stem cell transplant right up front, harvesting your cells, keeping them in the fridge just in case you need it. Can you talk a little bit more about that?


Yeah. I looked at having the stem cells available, so I could have a stem cell transplant if I needed one. And I wanted to continue to compete with the race walking. So, that was a small part of it. Also, I with my oncologist – this last appointment he mentioned that if my numbers continue to just go very slowly up that maybe the next appointment that we would discuss some options. He did mention that he liked – maybe for my particular situation – adding daratumumab. And we would be looking probably at a two- or three-agent combination. I’m, unfortunately, not able to tolerate the dex. So, I’m not sure how important a factor that is for trying to enter a clinical trial. I’ve noticed most of them do use dex because of the synergy there. So, that’s a bit of a concern for me as well.


I know you are not on your induction therapy now. You had some treatment decisions to make. Can you talk a little bit about what you thought about when going through those?


Oh, sure. When the famous 100-day visit to the hospital – after you have your stem cell transplant; my specialist asked me if I wanted to go on consolidation or right onto maintenance. And I guess I was kind of like Alan. I’m like – I wanna do this consolidation first because I wanna do as much as I can to get to where I have to be and then start the maintenance. The only thing is I was on Velcade for those eight weeks, and there was no change at all in any of my numbers. So, then I was on Rev only for a year and a half.

And after that, the light chains went up, and I had new lesions. And my specialist had suggested adding Ninlaro and dex. And I had known that – well, he had told me. I didn’t know it then – that Ninlaro and Velcade were in the same class. And I was questioning him. I said, “Why would I go on that if the Velcade did nothing for me. And he said, “Well, working as a triplet it’ll work better.” And it really did. So, I’m grateful for that, but I was very confused at the time.


You mentioned the words consolidation and maintenance. Can you explain what the difference between consolidation and maintenance therapy is?


Sure, consolidation is something that you do right before a maintenance program. It’s just eight weeks. They’re gonna try something to bring the numbers down even lower because, obviously, the stem cell transplant wasn’t as magical as they thought it would be for me at that time. So, I opted to do that just to give it a little boost to see if something else would work. And then the maintenance – I know Alan said he’ll be on it for three years. I think I’m gonna be on it indefinitely. I didn’t get an end date on mine.


And usually consolidation is more of a full dose of whatever treatment that you’re choosing to use as consolidation, whereas maintenance is usually a reduced dose or a reduced scheduling.


One thing my myeloma specialist has said to me recently is that the line between consolidation and maintenance is kind of blurring now, and more patients are on sort of maybe in between consolidation and maintenance where you’re on treatment with more than one agent for an extended period of time. He’s told me I’m gonna be on something forever and ever for the rest of my life. So, it’s sort of hard to say whether it’s consolidation or whether it’s maintenance. It all just sort of blurs at this point.


Yeah, it’s hard to make that distinction. When does the consolidation end and the maintenance begin? At what dose level?


That also shows how different we all are, and I’m in some different Facebook groups and support groups and things. And I see people asking what are the – how does the treatment progress, and what are the side effects of this drug and that drug. But we’re all different. And that’s the thing that is so important, even though there are some general guidelines – even in our treatments. I was classified as low risk. They got me into remission pretty quickly. So, things could change; but as of right now, there isn’t an end date to my maintenance treatments. I know people that didn’t do any maintenance. And then I also know people that probably won’t ever stop. And we were all treated at the same place.


It is very different from person to person, from treatment to treatment and even within yourself. Sometimes, you respond very quickly to one treatment and very slowly to another. So, that’s one of the benefits of being seen by a myeloma specialist, someone who only treats myeloma. Is everyone here being seen by a myeloma specialist?






Actually, I see two myeloma specialists – one and one for a second opinion, but I really do get my treatment locally. So, I’m very fortunate that all three of my doctors communicate with each other and work well with each other. So, let’s think about – if we had to make a treatment decision in the future and you were given two options, what kind of information would you like to know about each of those options before you make that decision?

I knew early on – one of the considerations I thought of after my stem cell transplant didn’t work was, I was still working at the time, and I was a teacher. And being a teacher, it was hard to take off from school to go to an infusion center to get my treatment. Or if I had to go several times a week, that just was not something possible. And I was trying to continue to teach.

So, one of things that I was considering back then was how the treatment was given. And one of the treatments that I chose was an oral treatment because that allowed me to continue to be employed. Eventually, I did retire. And that wasn’t as much of a concern, but back then, when I was still working and knew that it would be a conflict, that was something that came into my decision-making process. Anybody else?


I would have to say for me the side effects probably would be the least important. I think I can probably endure a lot at this point in my life if it’s just temporary. I do have three businesses, and that would come into play as far as how treatments would go. My primary business as a financial advisor – I can pretty much do that from anywhere. In fact, even when I was going through my stem cell transplants, I always had my laptop with me. But since then, in the last year or year and a half or so, I’ve started two more businesses, and that would definitely come into play.


Does that – you were saying –


And the other thing is I’d wanna know what the track record is, you know? Do we have a long-term track record?


So, you’re saying side effects for you would be least. But track record – are you talking more about the efficacy of the drug, how well it works compared to other drugs? What do you mean by track record?


I would wanna know – I would be more willing to trust something that had a long-term track record of success than something new that we really just don’t know that much about. And that conversation actually came up with my doctor because there are a lot of new drugs out on the market right now. And he did tell me. He said, “Some of myeloma specialists are kind of getting away from the older drugs that we know work and going to these newer drugs.” He said, “I like to combine the two.” And that’s basically what he did. For my consolidation round, instead of doing a lower-dosed VDT-PACE of Velcade, dex, and thalidomide like they had historically done – for my consolidation round, they put me on the daratumumab. And I did 16 weeks of that, one treatment a week for eight weeks and every other week for eight weeks, and then I went on my maintenance.


Any other things that you would wanna consider or information you would want to know about a treatment before you make that decision?


I think we’re getting close to the point where it’s gonna be important to understand a lot about the molecular basis of your particular form of multiple myeloma in order to be able to personalize the treatment. So, what particular mutations are driving your or my myeloma at this particular point? Because we know that changes over time, and what drugs are most effective against those mutations? I don’t know if we’re exactly at this point yet, but I think we’re getting close to that. So, when I relapse again, that’s something that I’m gonna be talking with my doctor about – exactly what mutations have I got and what are the best drugs against those mutations?


I do agree with that, and I know the Myeloma Institute where I was treated they do genetic studies on every patient. I’m sure they do that in other facilities also. And I definitely agree that that’s where they’re trying to go. And hopefully, they’ll be there soon.


Finding a treatment that’s aimed at one of the mutations you have – the goal of precision medicine. That’s pretty exciting. Any other things that you might want to consider? How do find out about new treatments? There’s so many new treatments first that are FDA-approved and available. But there are also a lot of treatments and clinical trials. I know when I was newly diagnosed, I had no idea what was available to treat multiple myeloma. I didn’t even know if I had a choice of treatments. I just blindly followed my doctor’s orders. My doctor told me what he thought was best, and I said yes.

But now I know there are so many treatments. How do you find out information about them so that you can have that engaged discussion with your doctor?


Selinexor – the newest one that was approved – one of the gentlemen in our support group has been on it for eight months on a trial. So, we watched him go from literally look like he’s dying to dancing the jig. It’s awesome. So, knowing people who are on that particular drug or whatever and then inquiring about it because I know Krissy is starting with that as well. That’s how we learn. And we just learn everything from the IMF. I learn on online and from our support group. Deena is an amazing support group leader.


Great. So, you learn information through your in-person support group –




– and through talking to someone else who’s been on that treatment. Other ways we could gather information about treatment options? Alan, do they talk about treatment options in some of your online support groups?


They do. I see a lot of information about that. I’m an administrator on a Facebook group for a particular drug. So, I see a lot of people making comments about different treatment options that they’re doing and their success.

I probably don’t put as much research into this as a lot of people do. I’ve battled the fight of not becoming my disease is what I call it. You can’t overwhelm yourself with information. I’m a big picture guy anyway. I’m not an engineer type-like. My wife is. Her dad was a retired engineer. So, she wants all the little details. I just want the big picture. When I go in, they do my test. I just wanna know good or bad. That’s all I wanna know. I would have to say that talking to people that have the disease and their experiences probably has a bigger impact on me than anything. Because I believe that sometimes studies can be skewed, and I like personal knowledge.


Anybody else? Anyone actually go to the studies and read the studies or abstracts of the studies or ask their doctors about studies?


I do.


I thought you would sneak up. You’re in my support group. I know you talk about those studies, so do I. Go ahead. Talk a little bit more Mike.


I am the detail guy on that. So, I do read the studies. I’m on the institutional review board for the cancer center that I’m treated at. So, I get to see some of the trials even before they start. I’m fascinated by the disease and the science. If I take off my patient hat and put on my scientist hat, multiple myeloma is a really, really interesting disease. It’s a complex disease. It’s a complicated disease. And there’s a lot that we can learn about cancer in general by using multiple myeloma as a model cancer.

So, it’s fascinating to me to talk with my doctor about the research; and fortunately, he puts up with my dumb questions for the most part. So, to me, I just enjoy kind of understanding as much as I can about it. It gives me a sense of power. And maybe that’s an illusion, but it still helps. The more that I know, the more comfortable I feel about things. So, I do a lot of reading about it and keeping up with webcasts and so forth that are put on various foundations. And there are lots and lots of opportunities to learn. There’s a lot more to learn than I have time for, but it’s an interesting disease.


Mike, you and I are exact opposites, and we’d make a great team. You know that, right?




Yeah, even though we’re wearing similar shirts.


I’m glad we have such a varied panel today. It’s good having many different perspectives. Any other ways we educate ourselves about treatment options that are coming up?


I wanna add also that I try to participate in events like this. I do quite a bit of public speaking. I’ve been asked to be a PACE ambassador for one of the pharmaceutical companies. So, I travel around, and I get multiple myeloma specialists all over the country. So, I’ve learned a lot through those conversations. And I think it’s important for us to do things like this to give back. We all know how scary it is when we’re first diagnosed. And if we can do something like this or help somebody that’s newly diagnosed, I mean we’ve done a great thing.


Right. I agree with you 100 percent. Being a retired teacher, it’s in me to help educate others because I really truly believe that knowledge is power. And there has to be just a variety of ways, whether it’s through teleconferences or online support groups or in-person support groups or mentoring, there’s just so many ways that you give back and help someone.


To me, the first of the unknown is worse than the actual treatments.


Exactly. And being able to talk to someone who’s been in your shoes is the absolute best.


Do you mind if I share something with you real quick?


Go ahead.


I mentioned that I went fishing four or five weeks after my second stem cell transplant. While I was there, I got a phone call from one of my clients, and one of her good friends had just been diagnosed with multiple myeloma. And he was gonna be treated where I was. And I was able to – she wanted me to talk to him. So, I called him. I shared my story. I told him how bad I was. And he said, “Well, I’m nothing like that. They caught mine early.” But I said, “Well, you understand my situation was serious.” I said, “I’d like to tell you where I am now. He said, “Okay.” I said I’m in South Louisiana fishing with my dad and my sons.” And he said, “You’re kidding!” I said, “No, I caught a 30-pound fish last night. I’ll send you a picture in a minute.” And just to hear the change in his voice, the tone of his voice, to give him that encouragement that everything was gonna be okay –




– was an amazing feeling. About a year and a half later, I was fishing again in South Louisiana. And I only go a few times a year at most. And I got a phone call, similar situation – a single dad with a 13-year-old daughter. And I got to share my story with them. I got her – I got them on speakerphone so they could both hear me. My daughter was 14 when I was diagnosed. I will never forget that – being able to talk to them and encourage them because we all know how important your attitude plays a part in our recovery.


Exactly. Thank you so much for sharing that very personal story. And I’m sure we all have a similar story of a way that we spoke to someone and probably made a difference at that point in their journey. So, we’re coming to the end of our program. What are some things that you know now that you wished you’d knew then about making treatment decisions? Anything that you know now that you wished you knew in the past?


I think one of the things I’ve learned is not to self-diagnose. I think when – it took nine months to get my myeloma diagnosis. I had broken a rib previously. And so, after that race, I thought I had just broken another rib. And it got better and went away. And a couple of months later when I turned over in bed, it felt like a knife going through me and took my breath away. And then another two months went by. I thought – well, I just re-broke it. Another two months went by and same thing, turned on my side in bed at night, and it went another knife through me.

So, I just even competed in some other races that summer. And I didn’t quite feel like I could go as fast as I wanted to or I might really do some serious damage. And that’s when I knew I needed to see a doctor. And I did, and I got bronchitis. And they first treated me and checked out everything for heart and didn’t find anything. And then, when I got the bronchitis, I went back to the doctor. And that’s when they decided to send me to a specialist, and he just touched my sternum and realized it was deformed and said he didn’t even wanna touch it until he got some images. And that’s when he – after the images that he got, he referred me to the West Michigan Cancer Center for further diagnosis.


Josine, any final words of wisdom?


Well, like Connie was saying about self-diagnosis. I thought I hurt my back at work. If I had only heard the words multiple myeloma in life growing up, which I never heard of it until diagnosis, I think it would’ve been less painful a journey to say the least. Well, you know, it’s all part of everybody’s journey. And we’re here today, and every day’s a gift.


As far as things I wish I would’ve known; I wish I would’ve known how hard the battle would be after the major treatments. It took me a long time to bounce back. My immune system just wasn’t very good. I kept pushing myself probably harder than I should have, but it goes back to the same thing – is do things that you don’t feel like doing. Push yourself to do the things – there are days when I don’t feel like getting up out of bed, even today. For the last week and a half, I’ve been fighting a cold. I actually – Thursday before last, me and my oldest son took our four-wheel drives to an off-road event and camped out for the weekend. Of course, I got sick the day we got there. But we had a great time and made some great memories, and the price was well worth it.

And that’s kind of the attitude that I have. I know that there’s a price to be paid at times for the things that I do, but every day is just a blessing. Every day is an opportunity to have a positive impact on somebody else’s life, and every day is a day to make memories with my family and my friends and the people I love. And put your focus there.


Wonderful words.


The way that I put it in my talks is – we will find in life whatever we look for. If we look for reasons to be sad and upset and depressed, we will find those. If we look for reasons to smile and be happy, we will find those also.


That’s true. Very good. I could listen to your words of advice all day long, but we don’t have all day. So, how about Mike. Do you have any final words of wisdom? Advice?


I guess the thing that comes to my mind that I know now that I didn’t know at the beginning – there’s so much. I didn’t know anything. But I realize now that I’m not alone. I felt very alone at first, but I’m not alone, and I’m not alone in lots of different senses. One sense is that there are other patients and other folks who are going through multiple myeloma just like I am. And so, a forum like this is really important to be participating in. I believe participating in in-person support groups is important, online support groups.

So, just realizing that you’re not alone is a key thing. And another way that I’m not alone is I have a wonderful team of doctors and nurses and healthcare professionals working to make me as well as I can be. And then I also am very blessed to have great friends and family. So, just knowing that I’m not alone is a key, key thing.


I like that. I’m not alone. Very good. Well, we’ve come to the end of our time. I think we learned a lot of great information between each other, and I’m hoping that it’s gonna be very beneficial to the myeloma community. So, to our audience, thank you for joining us for this Patient Empowerment Network programming, Myeloma Patient Café. I am

Cindy Chmielewski. And remember that this fifth -grade teacher says, “Knowledge is power and is your best medicine of all.” Thank you very much for joining us.

Please remember the opinions expressed on Patient Empowerment Network (PEN) are not necessarily the views of our sponsors, contributors, partners or PEN. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

How Leukemia is Diagnosed

Introduction to Leukemia

Cancer and neoplastic lesions are affecting our lives every day. Nearly 40% of the world’s population is affected by cancer—irrespective of age, gender, and ethnicity. Equally detrimental to cancer’s physical manifestations are the psychological influences. However, medical advancement and new research are helping to to combat this life-threatening disease.

Of all the cancers of the body, the most treacherous is Leukemia. It is a cancer of blood cells. Humans have three kinds of blood cells: red blood cells, white blood cells, and platelets. Leukemia involves the malignant proliferation of white blood cells (WBC).

Our white blood cells are major components of our body’s defense mechanism. They play a vital role in fighting against diseases, whether bacterial, viral or fungal in nature. They originate within the bone marrow, spleen and lymph nodes.

A person suffering from Leukemia has poor white blood cell functioning. WBCs start to divide abnormally eventually outgrowing the normal number of cells.

Leukemia has 4 types:

  1. Acute Myelogenous Leukemia (AML)
  2. Chronic Myelogenous Leukemia (CML)
  3. Acute Lymphocytic Leukemia (ACL)
  4. Chronic Lymphocytic Leukemia (CLL)

1. Acute Myelogenous Leukemia (AML)

Acute Myelogenous Leukemia is a heterogeneous clonal disorder. It is characterized by immature myeloid cells and bone marrow failure. It commonly affects children and adults. Studies have suggested the disease arises from recurrent hematopoietic stem cell genetic alterations.

2. Chronic Myelogenous Leukemia (CML)

Chronic Myeloid Leukemia is a myeloproliferative (slow-growing blood cancer) disorder characterized by the existence of a balanced genetic translocation of chromosomes 22 and 9. It mostly affects adults. CML consists of 3 distinct phases: chronic, accelerated, and blast phases.

The history of patients with CML shows 3-5 years of chronic stage proceeding to a fatal blast phase and then progressing to an accelerated phase.

3. Acute Lymphocytic Leukemia (ALL)

Acute Lymphocytic Leukemia is the second most common Leukemia occurring in adults. Like other Leukemias, ALL’s pathophysiology is also based on chromosomal abnormalities and genetic alterations which happen to take place in differentiation and proliferation of lymphoid precursor cells present in the bone marrow and blood. In adults, the precursors of B- lymphocytes are greater in number than the malignant T- lymphocytes.

4. Chronic Lymphocytic Leukemia (CLL)

Chronic Lymphocytic Leukemia is a tumor of CD5+ B cells that characterizes the deposition of tiny, mature lymphocytes in the blood, bone marrow and lymphoid tissues. Apart from the CD5 cells, other genetic alterations are involved in the pathogenesis of Chronic Lymphocytic Leukemia. Stromal cells, T cells and nurse-like cells in the lymph nodes also predominate.

Causes and risk factors for Leukemia

Although the exact cause of Leukemia is unknown, certain risk factors can contribute to making a person susceptible to it. These include radiation, viruses, exposure to benzene, smoking, genetics, and family history.

1. Ionizing radiations

Exposure to ionizing radiation comes from continuous radiation therapy for treating any pre-existing cancer. Prolonged exposure to X-rays is found mostly in people who work as radiologists and are exposed to persistent radiation. Patients who have received chemotherapy sessions for cancers are also prone to Leukemia. Ionizing radiations damage the DNA and result in the defective genetic makeup of stem cells.

2. Viruses

The Human T-lymphotropic Virus (HTLV-1) has been shown to have an association with Leukemia.

3. Exposure to benzene

Benzene is a toxic solvent used in cleaning chemicals and some hair dyes. Benzene’s toxic effects on the blood and bone marrow include increasing the risk of Acute Myeloid Leukemia (AML), myelodysplastic syndrome, and other hematological malignancies, such as non-Hodgkin’s lymphoma.

4. Smoking

Smoking is not only detrimental for the lungs alone but for the entire body. Although the link between smoking and Leukemia is unclear, studies say it can affect the bone marrow and increase the chances of AML in young adults.

5. Genetic conditions

Chromosomal abnormalities are also responsible for increasing Leukemia susceptibility. Examples include Down syndrome, Klinefelter syndrome, Fanconi anemia, Li-Fraumeni syndrome, Bloom syndrome, Ataxia-telangiectasia, and neurofibromatosis, to name a few.

6. Hereditary

The most common cause of Leukemia is family history. If any family member has had Leukemia it increases the risk for other blood relatives.

Signs and symptoms of Leukemia

The signs and symptoms of Leukemia vary with different forms. They are generally nonspecific and warrant investigations for proper diagnosis.

Acute Myeloid Leukemia (AML)

The signs and symptoms of AML are:

  • Fever
  • Pain in bones and joints
  • Pale skin
  • Easy bruising and contusions
  • Recurrent infections
  • Unusual bleeding, epistaxis, bleeding gums

Chronic Myelogenous Leukemia (CML)

The signs and symptoms of CML are:

  • Fatigue and muscle weakness
  • Shortness of breath
  • Pyrexia
  • Increased sweating mostly during the night
  • Cachexia (weight loss)
  • Abdominal discomfort secondary to spleen enlargement
  • Stomach bloating
  • Itching
  • Pain in joints and bone

Acute Lymphocytic Leukemia (ALL)

The signs and symptoms of ALL are:

  • Joint pain and muscle fatigue
  • Fever
  • Frequent infections
  • Epistaxis (Nose bleed)
  • Lumps felt around the neck, groin and underarms as a result of lymph node swelling.
  • Pale skin
  • Shortness of breath

Chronic Lymphocytic Leukemia (CLL)

The signs and symptoms of CLL are:

  • Nocturnal sweating
  • Fever
  • Recurrent infections
  • Fatigue and constant tiredness
  • Cachexia
  • Loss of appetite
  • Stomach bloating as a result of splenomegaly (enlarged spleen)
  • Shortness of breath
  • Pea-sized swelling or lumps in groin, neck or armpits.

Diagnosis of Leukemia

Early detection can prevent complications. The earlier the diagnosis the easier treatment is. Medical advancement has made diagnosis easier than ever before. Some of the essentials to reach an accurate and precise diagnosis are enlisted below.

History and examination

A proper and detailed history is the key to an ideal diagnosis. It involves asking relevant questions related to the signs and symptoms that can link to the suspected disease.

Your physician might ask the following questions:

  1. How long have you been feeling a fever?
  2. What is the temperature?
  3. Do you feel a loss of appetite?
  4. Have you experienced prolonged bleeding after a cut?
  5. Have you noticed any changes in weight recently?
  6. When did you notice lumps?
  7. Are these lumps felt, painful and movable?
  8. Did you feel the lumps gradually increasing in size?
  9. Do you face difficulty in breathing?
  10. Do you feel you sweat a lot while sleeping?
  11. Are you taking any medications?
  12. Have any of your family members had any diseases?
  13. When did you feel the need to visit the physician?

The answer to the above questions can lead to the next step, investigations.

Investigations for Leukemia

Investigations are the major component involved in diagnosis as they make the suspected disease clear to understand. These include blood tests, radiology and biopsy.

1. Blood tests

  • Complete Blood Count (CBC)
  • White Blood Cell (WBC) differential
  • Blood smear
  • Tumor markers
  • Cerebrospinal fluid (CSF) analysis
  • BCR ABL1
  • Genetic tests for targeted cancer therapy
  • Chromosome analysis

The most commonly used test is the Complete Blood Count (CBC) which shows a clear picture of the abnormal growth of red blood cells, white blood cells and platelets.

2. Radiology

The excessive proliferation of the cells in the bone marrow leads to marrow expansion and invasion of the cortex which, in later stages, can be seen by radiographic studies. A simple X-ray can reveal any spot bone changes. In some circumstances, a CT-scan may be needed to extensively study the disease and prognosis.

X-ray findings may include:

  • Osteolytic lesions; most commonly seen in Acute Lymphocytic Leukemia seen in small and flat bones, metaphysis of long bones.
  • Metaphyseal bands (classical Leukemia lines)
  • Bone destruction
  • Some pathological fractures
  • Radiological lesions, in later cases, are seen in the form of vertebral collapse, osteolysis of bones and avascular osteonecrosis.

3. Bone marrow biopsy

This is the gold standard investigation to diagnose Leukemia. This invasive procedure is done after the suspicion of Leukemia or when the blood test reports point to a Leukemic picture.

The procedure involves the removal of a small sample of bone marrow from the hipbone. A long, thin is the needle is used to extract the bone marrow. Once the sample has been taken it is sent to the laboratory where the histopathologists study the tissue microscopically.

Prior to examining the histopathologist or the lab technician prepares a slide. During the process, the specimen is then cut into thin slices. The sectioned structure is dyed using different dyes. The dye discriminates against the parts of the cells. The section is then placed on a glass slide and then covered with a slip on the top to keep the specimen intact. The slide is now ready to be placed under the microscope.

The samples examined under the microscope are then studied based on the type of cells, how the cells are arranged, whether the cells are normal or abnormal etc.

The microscopic findings may reveal:

  • Acute Myeloid Leukemia

Increase in bone marrow cellularity, consisting of granulocytic or monocytic forms a number of erythroid precursors

  • Acute Lymphocytic Leukemia

Hypercellular bone marrow with multiple tightly packed lymphoblasts that have undetectable cytoplasm, round irregular shape, divided nuclei, and dispersed chromatin. The bone marrow has B and T lymphoblasts with indistinguishable morphology along with necrosis in some areas.

Treatment for Leukemia

Treating Leukemia challenges all medical practitioners. Its success and failure solely depend on the extent of the disease and how far has it spread within the body.

Following are treatment options that can help fight Leukemia.

1. Chemotherapy

Chemotherapy is the use of anticancer drugs to kill or halt the proliferation of cancer cells. Generally, chemotherapy is administered orally or intravenously. In some patients, the chemotherapeutic agent is given intrathecally, i.e., injected into the CSF (cerebrospinal fluid) that bathes the brain and spinal cord. This is done after performing a lumbar puncture and injecting chemotherapeutic drugs, such as methotrexate. The course is usually repeated every three weeks.

2. Radiotherapy

Compared to chemotherapy that attacks all the cells of the body, including the healthy ones, radiotherapy is a localized treatment regimen. High ionizing-energy radiation emits to destroy cells that have an increased proliferation rate. Radiotherapy can either be given to cure the disease (therapeutic) or to improve the signs and symptoms encountered during the disease course (palliative).

3. Stem cell or bone marrow transplantation

Transplants are widely used in management and treatment of the disease. Bone marrow is transplanted from a patients’ family member, or another person who bears the same type of bone marrow, into the diseased person. The survival rates vary with different factors but the cost and affordability remain the major concern in this treatment modality.

4. Immune therapy

Immune therapy is another set of treatments that has some promising result in managing Leukemia. The immune therapy works by promoting the immune cells of the body to fight against cancer cells. One of the successful regimens in immune therapy is Gleevec, commonly given in Chronic Myeloid Leukemia. CML patients live a long, symptomless life with the daily oral administration of this drug.

Complications with Leukemia

Though Leukemia is curable, treatments may give rise to certain complications–basically the body’s response to the treatment given. The complications mostly arise from chemo and radiation.

They can include:

  • Anemia
  • Skin rashes
  • Altered taste sensations
  • Soreness of the mouth and throat
  • Liver dysfunction
  • Hair loss
  • Diarrhea
  • Fatigue
  • Bleeding
  • Fertility problems
  • Nausea and vomiting
  • Neurological effects
  • Impaired sexual activity

Relapse of the disease may also occur after some years.


The prognosis of Leukemia depends on how far has the disease has spread but the medical advancement has brought in new regimens that can now treat Leukemia at any stage. A person suffering from Leukemia and undergoing its treatment should be dealt with love, care, and pampering

How to help prevent Leukemia

Informational campaigns and awareness programs help people learn about the risk factors of Leukemia. Family members of Leukemia patients should undergo blood screenings to see if they have been affected. A good diet can help improve health status. Limiting use of benzene-infused chemicals can also make the disease less susceptible. Ceasing tobacco smoking can also help keep Leukemia at bay.



Acute Lymphoblastic Leukemia

Leukemia: an overview for primary care

Acute Myeloid Leukemia: diagnosis and management based on current molecular genetics approach

Treatment of acute myeloid leukemia

Clonal hematopoiesis and preleukemia-genetics, biology, and clinical implications

No free rides: management of toxicities of novel immunotherapies in ALL, including financial

Adult Acute Myeloid Leukemia Treatment

Acute Lymphocytic Leukemia

Genetics and prognosis of ALL in children vs adults

Etiology of leukemia. A review

Symptoms of adult chronic and acute leukaemia before diagnosis: large primary care case-control studies using electronic records

Acute lymphoblastic leukemia: a comprehensive review and 2017 update

Acute myeloid leukaemia: optimal management and recent developments

The Empowered Myeloma Thriver and Expert Chat

The Empowered Myeloma Thriver and Expert Chat from Patient Empowerment Network on Vimeo.

 Dr. Nina Shah, a specialist in multiple myeloma, discusses what newly diagnosed myeloma patients need to know.

Dr. Nina Shah is a specialist in blood diseases who focuses on treating multiple myeloma at University of California San Francisco. More about this expert here.


John Rosengard:

Hi, and welcome to the Patient Empowerment Network Program. My name’s John Rosengard, and I’m a myeloma patient survivor. I just wanted to tell you a little bit about our program today. I’m joined by my hematologist and oncologist, Dr. Nina Shah, from the University of California San Francisco. Dr. Shah, could you give us a little bit of your background, please?

Dr. Nina Shah:

Hi. My name’s Nina. I’m really thrilled to be here at this event. I have been at the University of California San Francisco since 2017. And before that, I was at MD Anderson Cancer Center. My clinical focus is in multiple myeloma, and my research focus is in immunotherapy and cellular therapy for multiple myeloma. I look after hundreds of patients with multiple myeloma, and our clinic here at UCSF as 1,500 active myeloma patients, and I really love participating in a mixture of clinical trials, which includes antibody therapy, novel drug combinations, novel agents, phase one trials, and chimeric antigen receptor T-cells or CAR T-cells.


That’s great. Thank you. I’ll give a brief rundown of my myeloma journey for other patients who may be tuning into this. I learned that I had multiple myeloma from the back-pain route, I guess I’d call it. I was diagnosed at UCSF in November of 2017 and started my treatment with Dr. Shah a few weeks later. The treatment involved me joining a four medication clinical trial and then having an autologous stem cell transplant a few months later in May of 2018.

After that, moved into the consolidation and maintenance phases of treatment. Consolidation brought back my quality of life pretty quickly, but, in maintenance, which will stretch out for another year to come, really just means testing and monthly infusions for me. Dr. Shah, do you have anything else to add about the clinical trials that I’m involved in or how patients might navigate the clinical trial process?

Dr. Nina Shah:

Yeah. So, it was a great partnership that you and I had for the clinical trial, and one of the things that this particular trial was looking at is understanding how many drugs are good for a myeloma patient upfront. As you know, we – the standard now, give three drugs upfront, but this explored possibly using an additional drug. And in your case, this drug was daratumumab, which is an immunotherapy. It’s interesting that we’re having this interview today because this drug, daratumumab, was just FDA approved to be given, upfront, exactly in your setting, with a transplant.

And so, even though your study is still maturing, the study before yours is confirming sort of what we thought might be true. So, it’s hard to say every detail that goes along with getting into a clinical trial, but I think one of the things that’s really important is a really nice conversation and partnership between the patient and the provider because it’s our responsibility, as providers, to explain the disease, why it happens, what are the clinical manifestations, what pain you may be having, what other things might be abnormal in your labs and, for you, as a patient, to feel like your symptoms are being addressed, but then, also, what there is as a clear plan for your treatment.

And in this way, the discussion about clinical trials really naturally enters because, if there is a clinical trial available, even in the upfront setting, like as what’s happened to you, it’s worth it to consider because that gives an additional opportunity for the patient and the physician to talk more about the disease and also talk about, what are the ongoing questions that we have in our study of multiple Myeloma? So, in this way, I think the conversation between the patient and the physician can help not only to understand the disease better, but also understand clinical trial options together.


Yeah, absolutely. The treatment selection process I found to be enormously important because, again, it’s the first part of fighting multiple myeloma directly. To piggyback off what you just said, some people might think that having a clinical trial as their front line or first treatment is a little unusual, but I didn’t think so. My initial reaction and research was that the T-cell therapies or the CAR T treatment option, which was still incredibly new and innovative in 2017, was really for serious relapse and refractory cases. And those patients were getting access to CAR T-cells first, and that counted me out as a frontline or a first-time newly diagnosed patient.

But also, some evidence was really coming out. The three-drug therapies were adding years of high-quality life as opposed to the two drug therapies that were used not that long ago. The research, however, was a little contradictory because none of the information that I found in that first faithful Google search was dated. So, I would find information from 10 years ago that was incredibly pessimistic about the options and the number of years of high-quality life, as well as the, I’d say, turnover in treatment options and the aggressive number of clinical trials that were being offered within the Myeloma patient community.

That didn’t come out until, I guess, my second or third faithful Google search, but it was really helpful as a layperson because my initial reaction was additional medications. And I brought along a show and tell for us. Here’s the additional medications.

Dr. Nina Shah:

Oh, good.


– and here’s the backup if those don’t work. I don’t take those now, but it’s not inconsequential to say, “It’s really important to understand the multiplying effect.” I’ll call it that as a layperson. The multiplying effect and the quick or measurable response. So, for newly diagnosed patients and their caregivers who might notice that treatment selection is a vital first step of the process, Dr. Shah, that requires learning a new vocabulary and acting when clearer data is ready and available. What general processes do you try to bring to a new patient when they’re just getting started on this journey?

Dr. Nina Shah:

Yeah, I think you make a really good point that the availability of information can be a blessing and a curse. So, a lot of my patients – actually, even in the past 10 years, I’ve noticed a difference, that people coming in and they know more about the disease because of things like Google and other information portals that we have, which I think is great, but also absolutely needs to be digested with a little bit of context from each patient’s particular case.

So, I think one of the main things that we, as providers, can do is educate the patient on how this disease comes about, and that’s one of the first things I do when I meet a patient. Saying, “Okay, do you know what you have? Has someone told you?” Because even if not everybody has a medical or science background, it’s pretty simple to explain that myeloma itself is a cancer of one of the immune cells and what the things happen – what they’ve happened because of that particular cell growing. And if patients can understand that, then they can look at their labs and interpret their data because, remember, now, we all have access to our labs, which a lot of my patients didn’t have 10 years ago, and we look.

We look at our little portals, and we try to see what the lab values are, what the anemia is, etc. And one thing that’s really critical to interpreting myeloma labs, for many patients, not all, is understanding the myeloma profile, which includes the SPEP, or serum protein electrophoresis, and then the light chain, the free kappa, free lambda, and sometimes the urine protein electrophoresis. And learning how to read those three things can actually help a patient feel very empowered because they don’t have to wait for every visit to talk to the doctor about their results. And the honest truth is, sometimes, every doctor doesn’t have time to e-mail every patient after every result. So, it’s a good way to get educated upfront, empower the patient, and say, “Okay, I now know how to interpret my labs, and I will work with you. You and I are gonna work together. If we see something abnormal together, we’ll chase it.”

And similarly, the bone marrow results – because those are also – I mean, even doctors have a hard time interpreting those. It’s important to go over the actual words that mean something to both the doctor and the patient at the initial diagnosis. And I think that’s another way that people can be empowered as they start their journey.


Would you say that it’s easy or difficult for a patient or a caregiver to get bogged down in detail as they’re picking up the vocabulary, picking up the processes available to them?

Dr. Nina Shah:

Yeah, I think that’s definitely patient dependent and caregiver dependent. What I’ve noticed – and I know I have a skewed perspective because I practice at an academic center, but what I’ve noticed is that a lot of people want to know. They want to know the details, and, at first, it’s a lot of information to digest because, the day that they’re seeing you for the first time, we’re talking about disease and prognosis and risk. And maybe, the second time, we’re talking about treatment and eventual transplant. But each time, I do show or I talk about their “markers”, and we talk about the labs. Each time that we have a visit, it’s a chance for patients to get more details and to digest those details more.

So, if-if they’re detail-oriented, that actually ends up being a good thing, uh, because then, as time goes on, they feel like, “Okay, I have an idea of what’s going on. I know what to look for.” But that doesn’t mean you have to be. Some patients would rather just have their provider tell them what they need to know, and they don’t wanna be a slave to the lab, and that’s fine, too. Either way is fine as long as both the patient and the provider know how to navigate each system.

I think that one of the things that you kind of already brought up is what tools that you guys, as patients, have, particularly within electronic medical records, and this is actually something relatively new for all of us. Like I said, 10 years ago, we didn’t use it as much. But now, you have things like the MyChart app, and then you have social media. We have patient advocacy groups. If you had to look at all that, what would you say is the most useful for you?


I’d say, a little selfishly, it was following your suggestion to follow you on Twitter, to keep up with the research because you’re a great filter for all of the content that’s out there. I know a few of the doctors that are very active in the multiple myeloma community are thoroughly well published. They’re speaking on a regular basis. And your Twitter feed, by the way, ninashah33 – just ninashah33 all one term.

You filter that out for me, so I have a running chance at actually finishing it in an hour when I pull it up because the content that you bring together is some highlights about what medications are working, what therapies are coming out that are that are combinations of medications – stem cell transplant, CAR T-cell therapy, and so on.

And in getting up the learning curve, which I think every patient and caregiver has got a duty to do, is a lot easier if there’s someone saying that there’s some raw research in the UK. There’s some raw research in these medical centers here in the U.S. Follow them. Follow these doctors. You’ll get a good read on what’s the curve. I think that that was a lifesaver because I could’ve really spent 10 hours a week just getting background and just getting comfortable with the content. And at some points, it was a little unnerving to find out that there’s a 50/50 chance of the life expectancy being measured in a very short time span versus having the forecast that you could really be returning to your life.

But I travel quite a bit for my work. You travel quite a bit for your work. To be able to get back to that pretty quickly was evident a month after my stem cell transplant, which I remember ticked you off a little bit that I should be just saying that I can’t just stroll in the San Francisco Airport and go wherever I wanted to. I had to give a little bit of thought about my compromised immune system, which I well and truly did. But again, going off of the filtered information as opposed to the raw information was a big plus for me.

Dr. Nina Shah:

Yeah, I mean, that was one of the things, I think, for you and I, as a doctor/patient relationship, that I saw you were really focusing on things – that you wouldn’t ask, necessarily, “Okay, when’s this gonna be cured? When’s this gonna be cured?” But rather, “Okay, I know that there can be times between my state right now and eventual potential progression or not, and how do you tell a patient – if you see a patient who’s newly diagnosed, how do you tell them to focus on those types of things so that they can bite off small pieces and go day to day, get back to their life, and not focus on just one thing about, “Oh, is this gonna be cured ever?” What advice do you think you can help people with that?


Well, my first thing is – and this is me being me, but I built a spreadsheet. I built a giant spreadsheet of my lab data, going back to, really, the 1990s. Nothing to do with UCSF’s treatment, but just I wanted to put it all in one place so I had just a reference point to start with.

And it gave me a silly sense of control, I guess, to say, “I can now detect if there’s a very, very slight change in the IgG kappa reading from month to month to month. I can be on top of it just like you are.” That doesn’t give me an MD or a license to practice medicine, but it gives me the ability to at least say, “Is this anything to be concerned about, or is this still in the error bar of I’m still okay? And we haven’t gone up here. We haven’t gone down here. We’re still sort of moving along over time.”

And that comfort level of just building some sensitivity to what data mattered and what data could still move around and be perfectly normal, that sensitivity that’s – Microsoft Excel doesn’t give you that. The raw lab data doesn’t give you that. That’s where your position and honest conversation can take you to a good understanding of how those different variables interplay with one another and how a sudden spike in one can be indicative of nothing more than having a cold or picking up the flu, unfortunately, during that time of the year, cold and flu season.

Dr. Nina Shah:

Yeah. Yeah, I think that, patients like you, who are either, maybe, just starting therapy or maybe just starting to get engaged with their process, trying to have more control, power, and, also, education about what they’re doing, it’s really important to ask questions to their provider. And what you said is right. You’re looking at the labs on the spreadsheet. I’m looking at it at the electronic medical record. We’re both human, so I may miss something. And I try not to, but – and you may catch something.

Even though we have our “roles” as provider and patient, we are on this together. So, I think it’s really important for patients to ask things of their doctor. They should never feel shy. I know it’s sort of hard because you’re talking to a stranger and, yet, someone you have a relationship with. So, it’s kinda interesting. You may not want to question that person, but you should with all our capable thinking and processing information different ways. And it’s really nice – I actually like it when the patients ask me, “Well, what do you think about that?” And I may have not thought about it in the way that they’re thinking about it because they may tie it into a symptom that they’re having, or, like you said, you may have a virus or something and say, “I have this virus,” and maybe I was worried about this IgG, but it turns out that you had a recent virus. So, they’re all ways that we can put information together and, more information, the better.

So, one thing I would just say to patients and what I feel like you benefit from is, ask questions. Ask questions about lab interpretations, about what next steps are, just questions about what’s been going on lately. And I think that will give education and, I think, ultimately, will give the patient more power.


Mm-hmm. And just to go a little further into that point, every month, I come in for my lab work as part of the participation in the clinical trial. Other patients may be coming in on a less frequent basis, perhaps every 90 or 180 days or once a year if they’ve got a, for example, smoldering myeloma or other conditions. My point in bringing this up is that one of those may be – and if we all live long enough, one of those probably will be – one to say, “It’s not getting better, and this condition is getting a little worse.” That’s another step I’m ready for, to just say, “What are our options at that point? What treatment options do we have available?”

Because it’s not a one and done. It’s not like having a broken bone where you can just say, “Set it, get it in a cast, take good care of it, and keep the weight off of it. And then, six to eight weeks later, something new will be ready to happen.” This is an ongoing battle with them and being a part of a clinical trial that does help the 30,000 newly diagnosed multiple myeloma patients here in the U.S. be a little closer to some effective treatments is, I think, all part of the healthy part of the equation. Any further thoughts on first steps for those newly diagnosed patients?

Dr. Nina Shah:

Yeah. I think, as you already mentioned, things like the Patient Power website, Myeloma Crowd,, Myeloma Beacon, MMRF – all of these are really important places where patients can get good quality information. I like hearing that my patients have gotten information from other people. It’s okay to get a second opinion. It’s totally fine. You should feel in control of your health and your decision making.


Absolutely. Just a little bit about Dr. Shah, from my perspective, she’s my go-to person for multiple myeloma at UCSF, but UCSF is like any big institution. If you like processes, multiple myeloma is your condition. If you want to talk about faster infusions, because they might be taking too long, there’s a team, but she’s not the right person to talk to directly. If you wanna understand lab results, she’s the right person. But if you have trouble logging in or with the helpline being available for you, there’s a team for that. If you have questions about billing and insurance, there’s another team for that. Team management support groups, another team.

UCSF has got depth and strength, and other regional medical centers that have, I guess, the specialists, rather – a large specialist team in multiple myeloma – will, inevitably, have that layering of people. And I found that my treatment team grew from my one best friend or two best friends, my general practitioner here in the Bay Area, California – it grew to 10 people to include Dr. Shah, and then it grew to 25 people. Before I knew it, I had 25 best friends who wanted to know how I was doing and how my symptoms were relative to subsequent treatment stages.

And it took time for me to get to know them and for them to get to know me, but that investment of time and effort to, again, be part of the team and be part of the equation and processes was an important part of just getting through the clinical trial efficiently and effectively and then just being ready for the next steps of, again, prospectively, full remission, relapse, refractory, and just a whole variety of outcomes that have yet to play out over the years and decades to come.

So, with that in mind, I just wanted to move on to a couple of questions that have come up from different participants at the Patient Power website. The copays for multiple myeloma drugs can be very expensive. Any advice on how to deal with that, or are there programs that can help?

Dr. Nina Shah:

Yeah, this is a really important question. I’ve frequently noticed this, especially in my Medicare population, particularly with oral chemotherapy, for example, lenalidomide. There are patient assistance programs, which are company-specific, and you can ask the company directly. They usually have a hotline, or you can ask, at your particular oncologist office, if they have a connection with a local area rep who can put you in contact with that helpline. This is a frustrating part, and what I’ve been trying to do is, when I meet with a lot of these representatives, I try to take your complaint about this to them directly and say, “Look, my patients are not gonna get your drugs if it’s not affordable.” And ultimately, that means that that drug company needs to work with all the insurance companies, including Medicare drug coverage, to supply this for patients. So, that’s what I can do on my end. And then, from your end, really working with the patient assistance programs. They do exist, but they’re a pain. They’re one more thing you have to do, which it’s hard for us to tell you, but we also want you to get the drug.


Second question comes from Jefferey. It’s been two years since I was diagnosed with smoldering myeloma. My oncologist said that my numbers are not at a point for treatment today, but he has me doing bloodwork and bone x-rays every three months. This is causing me a lot of stress and mental anxiety. Is this a normal situation to be diagnosed and not doing anything about it? Any advice on how to cope with the stress and anxiety of waiting to be treated? What do you think, Dr. Shah?

Dr. Nina Shah:

Yeah, this is a really important question because there are a lot of patients out there who are diagnosed with smoldering multiple myeloma, or what we call asymptomatic myeloma, meaning that you have some plasma cells in your bone marrow, and you also have some evidence of M-protein or light chain, but you don’t have enough to require treatment, and the first thing I can say is there’s reason for that; because, as of now, we don’t have any data to show that treating you early before you develop symptoms is going to prolong your life.

That being said, there are some clinical trials that look at patients, what we call high-risk smoldering myeloma, to be enrolled in clinical trials of treatment versus not. I have mixed feelings on this because I’m one of those people that likes to preserve quality of life as much as possible, and most of my smoldering myeloma patients are full-time at work, not doing anything else. And so, what I always tell these patients – and I don’t wanna put this on every other physician out there, but I always say, “Let me do the worrying. You come in for your labs. You come in for your assessment.”

I usually do a bone marrow and either PET or MRI every year because that can change decisions. But I always tell my patients, get the labs, walk out of the lab building – out of your Quest or whatever it is – and let me do the worrying because there is nothing you can change, and I want it to be something that’s just a part of monitoring but not anxiety. In response to the question, it is totally normal to get that frequency of checking, and that’s really on us, as a partnership, to make sure that you feel comfortable with that frequency, but also that your provider is checking up on the labs when they come to the boss.


What do you think are some of the mistakes that a newly diagnosed patient can make about their treatment or about their recovery?

Dr. Nina Shah:

Well, that’s a hard question because I think the patient, really, can never make a mistake because, ultimately, it’s about what the patient wants. But I will say that, a lot of times, patients think that they can not get treatment for symptomatic myeloma. For example, they have a new plasmacytoma on their shoulder or have broken a bone or a new anemia. And they’ll say, “Well, I just wanna use natural means to get rid of this.”

And I don’t have any problems with natural medicine or anything like that, but my education and experience has taught me that it’s not gonna be enough to stave off this really aggressive malignancy, and the last thing I want someone to do is to break a bone in their spine and then become paralyzed. So, I always say, “I’m happy to work with you and whoever your naturopath is or whoever your other physician is, but I truly feel that you need treatment, and then I want that to get through to you.” And that’s just my experience. But again, I always do try to respect what the patient’s wishes are.


Another participant on the Patient Power website asks, “Is there a resource for local oncologists to reach out for information and collaboration about multiple myeloma?”

Dr. Nina Shah:

Yeah. Now, depending on where you are, you’re probably in touch with the local, maybe, academic hospital, and it’s hard to know – just depends on where you are in the U.S. But I really do like going to the Multiple Myeloma Research Foundation website because they have information there, and you can actually contact them, and they would be able to put you in touch with someone who might be a myeloma expert. I mean, you already said it. You can even look on Twitter and follow myeloma feeds and actually do a direct message to any one of us. Usually, one of us gets the message, and we’ll respond back.

Most everyone has a way to contact through the American Society of Hematology. That’s another way that physicians who are hematologists contact each other. If you really want to get your doctor to somebody who’s a myeloma expert, it should not take more than three tries of contacting this person or that person to be able to get through. My email is public, and other people’s are as well, and I usually respond. So, it’s more a question of making that initial effort. Okay, I’m gonna go through a web search and find this person’s e-mail and send them a message. But we are always willing and happy to answer these questions because, a lot of times, these patients may wanna come for a second opinion or consider a clinical trial or just need some advice, and that’s totally fine.


Just to add to that, Dr. Shah, one of the things that I’ve noted from MMRF and other organizations is, periodically, there are patient summits that are offered all over the country, and they’re generally – in my experience so far, is that there are at least 500 to 3,000-person beds. They’re quite large, and it may be, I guess, comforting, to a degree, to meet and be met by others that have the same concerns about multiple myeloma as a patient or a caregiver and see that there is some strength in numbers. Do you have any closing thoughts on our talk today?

Dr. Nina Shah:

Yeah. I really like the point you said about meeting other people with this disease and other caregivers. We’re fortunate enough, in the Bay Area, to have a patient-centered support group, and I really like doing programs with them.

And what I’ve noticed about all the patients who attend something like that, even if it’s a cancer, in general, support group, is that they can share stories and sort of talk. I mean, it’s important. It’s a really huge thing you’re going through, and you need to talk to other people about it and people who understand. So, it’s great to get a support group even if it’s just cancer, even better if you have a myeloma support group. And online, there are support groups as well. So, whatever you can do to make yourself feel not alone will also add to your empowerment.


Well, thank you, Dr. Shah. It’s been great catching up with you today. Thank you for participating in this event, and that is it for us. Thanks for joining us.

Please remember the opinions expressed on Patient Empowerment Network (PEN) are not necessarily the views of our sponsors, contributors, partners or PEN. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Holiday Hacks: Tips for Coping with Chronic Illness During the Holidays #patientchat Highlights

Last week, we hosted an #patientchat onHoliday Hacks: Tips for Coping with Chronic Illness During the Holidays. The #patientchat community came together for an engaging discussion and shared what was their mind.

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Multiple Myeloma Bone Marrow

More about Multiple Myeloma

Cancer, the abnormal growth of cells that multiply aggressively, has become one of the most prevalent diseases in today’s time. Diagnosis marks one of the most challenging periods in a person’s life. Although curable at early stages, the malignancy itself and the side-effects of treatment change the sufferer’s life at a significant scale.

Lymphocytes represent a major component of the body’s immune system. There are two types of lymphocytes, T lymphocytes and B lymphocytes, and both are crucial for fighting pathogens. When the B lymphocytes respond to a foreign body, they mature into plasma cells and memory cells. The plasma cell is responsible for making immunoglobulins, also known as antibodies, specific to that particular pathogen. These antibodies are the most important precursors in the defense mechanism of the body.

Multiple Myeloma is a type of cancer that seeds itself in these plasma cells that comprise the body’s major immune component. Plasma cells are the prime fighters against foreign organisms such as bacteria, virus, and fungi. Their tendency to engulf the opponent malfunctions and thus the immunity gets badly affected in Multiple Myeloma.

The studies show that Multiple Myeloma is more common in Africa than any other part of the world. The rationale behind this etiology is unclear but it might be a result of being deprived of health-building resources.

Pathophysiology of Multiple Myeloma

Multiple Myeloma usually presents as destructive plasma cell tumors (plasmacytomas) involving the axial skeleton. The bones most commonly affected (in descending order of frequency) are the vertebral column, ribs, skull, pelvis, femur, clavicle, and scapula. Lesions begin in the medullary cavity of the bone, erode cancellous bone, and progressively destroy the bony cortex, often leading to pathologic fractures; these are most common in the vertebral column but may occur in any affected bone. The bone lesions appear radiographically as punched-out defects, usually 1 to 4 cm in diameter, and consist of soft, gelatinous, red tumor masses. Less commonly, bone disease produces diffuse demineralization (osteopenia) rather than focal defects.

In advanced disease, plasma cell infiltrates may be present in the spleen, liver, kidneys, lungs, lymph nodes, and other soft tissues. Commonly, the high level of M proteins causes red cells in peripheral blood smears to stick to one another in linear arrays, a finding referred to as rouleaux formation. Rouleaux formation is characteristic but not specific, as it may be seen in other conditions in which lg levels are elevated, such as lupus erythematosus and early HIV infection. Rarely, tumor cells flood the peripheral blood, giving rise to plasma cell leukemia.

Bence Jones proteins are excreted in the kidney and contribute to a form of the renal disease called myeloma kidney.

Causes and risk factors for Multiple Myeloma

Although the cause of multiple myeloma is not known, certain risk factors can contribute to it.

1. Toxic chemicals

Toxic, cancer-causing chemicals include benzene-infused products, products that contain sulfates and parabens, fire retardants, dioxins, polychlorinated biphenyls (PCBs) and polybrominated diphenyl ethers (PBDEs). These all are said to be the highest cancer-causing agents. Out of all the chemicals, the ones containing chlorine are the ones that rank first in the production of cancer. Research has demonstrated the relationship between Multiple Myeloma and occupational exposure to six chlorinated solvents: 1,1,1-trichloroethane (TCA), trichloroethylene (TCE), methylene chloride (DCM), perchloroethylene (PCE), carbon tetrachloride, and chloroform, respectively. The occupational solvents here refer to those used in industries and factories.

The study concluded that among all six chlorinated agents, TCA showed the most elevated levels in leading to Multiple Myeloma.

2. Exposure to radiation

Workers at hospitals or diagnostic institutes are at higher risk of Multiple Myeloma. The radiation emitted is so powerful that it can surpass the skin, tissues, and muscles and can penetrate the bones to enter the bone marrow. A cohort study done in Mayak concluded that radiation emission greater than 1 Gy has significantly produced a higher risk of Lymphoma, Leukemia and Multiple Myeloma.

3. Viruses and immune disorders

Certain viruses have a correlation with Multiple Myeloma however, their association is still unknown. The viruses include: 

Simian Virus 40: This is one of the most intense polyomaviruses. It induces primary brain and bone cancers. It’s oncogenic (cancer-causing) property makes it the major culprit in causing multiple myeloma.

Several herpes viruses: A study was conducted to evaluate the role of human herpesvirus 8 in the pathogenesis of multiple myeloma. Patients with Multiple Myeloma were selected, and their samples of blood were drawn and sent to the lab for testing. The study concluded that the majority of the patients with Multiple Myeloma showed the evidence of human herpesvirus 8 in their blood samples.

Apart from the above viruses, first degree relatives of patients with Multiple Myeloma may develop MGUS (monoclonal gammopathy of undetermined significance). Hepatic viruses and HIV have also proven to be linked to Multiple Myeloma.

4. Hereditary

As with many other diseases, Multiple Myeloma tends to run in families who have already been affected by it. In some cases, Multiple Myeloma goes undiagnosed in a principle patient who transfers it to several offspring before discovering it.

5. Age

Patients aged 40 to 60 are at a higher risk to develop Multiple Myeloma.

6. Gender

Multiple Myeloma inflicts men more often than women. The cause is still unknown, but it could be due to hormonal differences. The male to female ratio is approximately 1.54 to 1.

7. Obesity

The role of obesity in contributing to Multiple Myeloma is unclear, but it might be due to insulin resistance and improper functioning of the hormones.

8. Race

African-Americans are twice as likely to have Multiple Myeloma than other races.

Clinical features of Multiple Myeloma

The clinical manifestations of Multiple Myeloma are due to malignant cells invading bone marrow, excess antibodies with abnormal properties being produced, and immune suppression.

Bone erosion by expanding marrow increases the susceptibility to pathological fractures. The dissolution of cortex increases the level of calcium in the blood leading to hypercalcemia, thus the neurological manifestations set in — such as confusion, weakness, lethargy, and constipation. Excess calcium reaching the glomerular membrane in the kidneys contribute to renal dysfunction. The renal impairment is already present in 20% of cases at the time of Multiple Myeloma diagnosis.

Decreased and defective production of immunoglobulins makes the person vulnerable to serious bacterial infections. The excess immunoglobulins are directly damaging to renal tubules thus producing proteinuria. The light chains of immunoglobulins secreted by the kidneys in Multiple Myeloma are called Bence Jones proteins.

Signs and symptoms of Multiple Myeloma

The signs and symptoms of Multiple Myeloma vary with the severity of the disease. Factors include:

1. Increased thirst and polyuria

The calcium from the bones dissolves into the bloodstream producing hypercalcemia and increased plasma osmolality which is sensed by the thirst center in the brain. This creates the paradox of increased thirst and polyuria to excrete excess calcium reaching the renal tubules.

2. Recurrent infections

The defective immune response of plasma cells decreases the humoral immunity in the body making the person susceptible to infections. The usual symptom is recurrent infections with common pathogenic organisms that are easily tackled by a healthy immune system.

3. Weight loss (cachexia)

Cancer cells have a high proliferation index and need excess energy and nutrition to thrive. They release mediators that ramp up the catabolic processes in the body, producing a cachexic state. This, combined with the loss of appetite and a general increase in nutritional demands to fight infections, escalates the weight loss.

4. Bone pains

The osteolytic activity in the bones makes them soft, brittle, and tender. Bone pain is mostly associated with the back and ribs because of increased marrow activity at these sites. Pathological fractures (bone fractures without a history of fall) occurs in long bones due to widespread osteopenia. Patients also complain of mobility issues secondary to bone weakness at joint site.

Other symptoms

Other non-specific symptoms of Multiple Myeloma include:

  • Shortness of breath
  • Constipation
  • Nausea
  • Muscle fatigue
  • Weakness

Diagnosis for Multiple Myeloma

As with other diseases, the investigations for Multiple Myeloma start with baseline tests and move toward more specific tools.

1. Blood tests

On the first suspicion of Multiple Myeloma, the physician may order the following blood investigations:

  • Complete blood count (CBC) to see changing blood cell indexes as a consequence of marrow failure
  • Complete Metabolic profile will show serum electrolyte levels, especially calcium and phosphate whose high levels are usually associated with Multiple Myeloma.
  • Serum Protein electrophoresis is rather a specific test that separates all the blood proteins, including the immunoglobulins (Ig), over a gel medium. The high concentration of Igs is specific to MM diagnosis.
  • Serum Free Light Chain (FLC) assay, performed on a blood sample, FLC assay is used for both the diagnosis and monitoring of Multiple Myeloma.

2. Urine tests

These include:

  • Complete Urine Examination (CUE) reveals the presence of proteinuria due to renal damage and the excess secretion of light chain immunoglobins (Bence Johns proteins). The CUE also shows any cellular debris and calcium crystals excreted along with increased urine osmolality.
  • Urine protein electrophoresis reports the concentration of proteins excreted by the kidneys.

3. Radiography

For skeletal changes, radiography studies are required to see the extent of disease, presence of bone deformities (osteopenia, fractures, etc), response to treatment, and prognosis of the disease. These are:

  • X-ray, taken of the painful bone or immobile joint.
  • CT-scan, a more advanced tool to study bone pathology
  • MRI, the gold-standard imaging modality for the detection of bone marrow involvement in Multiple Myeloma. It is also a favored imaging modality to rule out spinal cord compression in such cases.
  • PET-CT, provides valuable prognostic data and aids in the evaluation of response to the treatment regimen.

4. Bone Marrow

The gold standard of Multiple Myeloma diagnosis is the bone marrow biopsy. The marrow aspirate or tissue is taken from bone and is examined under a microscope. The marrow concentration of >10% of plasma cells is diagnostic of Multiple Myeloma. Even away from overt tumor masses, the marrow contains an increased number of plasma cells. The plasma cells may infiltrate the interstitium or be present in sheets that completely replace normal elements.

The classic triad of Multiple Myeloma consists of bone marrow plasmacytosis (>10% infiltration), osteolytic bone lesions, and the presence of myeloma proteins in the blood or urine. The presence of extramedullary masses in Multiple Myeloma is sufficient to reach the diagnosis even in the absence of bone lesions.

Treatment for Multiple Myeloma

There a several different treatment options for Multiple Myeloma.

1. Targeted therapy

Targeted therapy specifically targets malignant Multiple Myeloma cells and blocks their uncontrolled proliferation. Bortezomib (Velcade), carfilzomib (Kyprolis) and ixazomib (Ninlaro) are a few targeted drugs that block the synthesis of proteins in myeloma cells, halting their cell cycle. The targeted therapy has little to no side effects as it is only directed to malignant cells. Some monoclonal antibodies are also available that bind to specific receptors on myeloma cells and kill them.

2. Biological therapy

Compared to targeted therapy that targets myeloma cells, biological therapy modulates the body’s own immune system to attack myeloma cells. Thalidomide, lenalidomide, and pomalidomide “sensitize” the immune cells of the body that starts targeting the malignant cells.

3. Chemotherapy

The use of anti-cancer drugs either intravenously or orally to kill the cancerous cells is the mainstay of chemotherapy. The chemotherapeutic drugs affect all the cells in the body which culminates in their widespread side-effects. The drugs that are beneficial in Multiple Myeloma include cyclophosphamide, doxorubicin, melphalan, etoposide, cisplatin, and carmustine. Multiple combinations of drugs are used and their dose is repeated three times weekly to prevent toxicity and get optimal response. Prior to stem cell transplantation, a high-dose chemotherapy regimen is advised.

4. Radiotherapy

High energy ionizing radiations are not therapeutic for Multiple Myeloma but can be used to provide palliative care, for example, the relief of bone pain associated with this disease. In some circumstances, the plasma cell tumor may be localized (called plasmacytoma) for which radiotherapy can be curative.

5. Steroids

Corticosteroids are well-known for their anti-inflammatory role in the body. They block the synthesis of inflammatory mediators that are responsible for the normal functioning of the immune system and antibody production. Corticosteroids such as prednisone and dexamethasone are the mainstay of treatment in Multiple Myeloma. Common side effects of corticosteroid therapy include gastric ulcers, osteoporosis, myalgias, hyperglycemia, and insomnia.

6. Bone marrow transplant

Stem cell transplants, also known as bone marrow transplants, are of two types: autologous transplants and allogeneic transplants. In the former, the donor stem cells are obtained from the patient’s own marrow and stored in vitro. They’re replanted after the high-dose chemotherapy to kill all the myeloma cells in affected the bone marrow. The process is the same for the allogeneic transplant, but the stem cells are obtained from a donor—a close relative.





Multiple myeloma: an update

Epidemiology of multiple myeloma

Acute renal failure in multiple myeloma

Multiple myeloma in the marrow: pathogenesis and treatments

Multiple myeloma: recognition and management

The diagnosis and treatment of multiple myeloma

Bone disease in multiple myeloma: pathophysiology and management

The clinical picture of multiple myeloma

Multiple myeloma: diagnosis and treatment

Multiple myeloma. Current problems in cancer

Multiple myeloma: 2016 update on diagnosis, risk-stratification, and management

Multiple myeloma: diagnosis and treatment



AML Research: What’s New in Treatment?

AML Research: What’s New in Treatment? from Patient Empowerment Network on Vimeo.

 AML expert, Dr. Jessica Altman, discusses the future of AML research, and new learnings that continue to improve current treatment approaches.

Dr. Jessica Altman is Director of the Acute Leukemia Program at Robert H. Lurie Comprehensive Cancer Center of Northwestern University. More about Dr. Altman here.

See More From The Fact or Fiction? AML Series

Related Resources

Misconceptions in Clinical Trials: What’s Fact and What Fiction?

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AML Treatment Treatment Side Effects: What’s Fact and What’s Fiction?



Are there any new treatments on the horizon that you can talk about, Dr. Altman?

Dr. Altman: 

Absolutely. So, I love to talk about new therapies in AML. Until the last couple of years – it had been 40 years since we approved a sustained treatment in the marketplace in AML. We had been treating the disease the same. And over the last couple of years there have been a growth of therapies. We’re now trying to sort out exactly when we’re using one over another. We also have clinical trials where we’re combining novel therapies for adults with either newly diagnosed disease or relapsed and refractory disease. 

We are in an era of looking out at antibody therapy in AML – that’s one of the new waves of treatment. We are still exploring targeting therapies in the sense of inhibition of FLT3, IDH, and other mutations. So, it’s an era where there’s lots of excitement, and I’m hopeful for our patients.


Yeah. Tell me what makes you most hopeful about the future of research in this area, and treatment?

Dr. Altman: 

So, I think that’s a great question. I think the fact that we now – the deeper the understanding we have of the biology of the AML, why AML happens, what mutations drive the disease, and then how to target those mutations with individual therapies is what excites me the most. So, our basic science research has exploded, and that occurs at a very quick pace, and that’s allowing us to develop therapies at a much faster rate than I would have anticipated before.


What a wonderful way to end our chat. Thank you so much, Dr. Altman, for taking the time to join us today.

Dr. Altman: 

It’s a pleasure to be here. Thank you so much.

Misconceptions in Clinical Trials: What’s Fact and What’s Fiction?

Misconceptions in Clinical Trials: What’s Fact and What’s Fiction? from Patient Empowerment Network on Vimeo.

AML expert, Dr. Jessica Altman, addresses common misconceptions patients have about clinical trials regarding treatments, regulations, and standards of care.

Dr. Jessica Altman is Director of the Acute Leukemia Program at Robert H. Lurie Comprehensive Cancer Center of Northwestern University. More about Dr. Altman here.

See More From The Fact or Fiction? AML Series

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How Is an AML Treatment Approach Determined?

Understanding and Managing AML Treatment Side Effects

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What about clinical trials? What common misconceptions do patients have about enrolling in trials?

Dr. Altman: 

So, I think the misconceptions regarding clinical trials can be very masked. And I think it really depends on the intent of a clinical trial and the phase of the clinical trial. I think that a well-designed clinical trial is almost always the right choice for a patient with acute leukemia at any stage in their therapy. 

That is a bias as a clinical trialist. I think it’s the right bias, but it is still my bias. I think patients frequently worry that they’re being treated as a guinea pig, or they’re not getting an appropriate treatment. What I can tell you is the clinical trials that we and my colleagues across the country and across the world participate in are clinical trials where the patients are getting at least what we consider a standard of care for that phase of their disease, and they may be getting something in addition to that or something that is slightly different, but expected to have a similar response rate. 

We have this phrase in clinical trials, something called equipoise, that if there’s a randomization between options that we need to feel, as the practitioner and as the clinical trialist, that each option is at least as good as the other.  


That kind of goes back to the vetting of treatments before they go to a clinical trial. Tell me a little bit about history. How can we make patients feel more comfortable?

Dr. Altman: 

I want to make sure that I understand the question.


So, how thoroughly are treatments vetted before they go to a clinical trial?

Dr. Altman: 

Great. So, the way that agents get into early phase clinical trials and then later phase studies are these are compounds that have been studied in the laboratory, then studied in small animals, then larger animals. And then, frequently, a drug is started in a patient with relapsed and refractory Acute Myeloid Leukemia and found to be safe – that’s what we call a Phase I study. 

Once we know the right dose and the associated side effects from an early phase clinical trial, later phase studies – i.e. Phase II, where the goal is to determine the efficacy and response rate is conducted. And then, if that appears and looks like it’s promising, a larger, randomized, three-phase study is frequently conducted, where we compare a standard of care to the new approach. 


So, patients should be comfortable that the clinical trial that they’re going through has been thoroughly vetted, has gone through multiple stages before human trials occur?

Dr. Altman: 

That is accurate in terms of compounds get through animal studies, and then depending on the way that the trial is being connected, will then be studied in patients either with relapsed or refractory disease or very high-risk disease. But it’s also very important to mention that these pharmaceutical companies and physicians are not making these decisions alone. 

The clinical trials are all reviewed by scientific review committees through the cancer centers, which are other investigators making sure that everything appears appropriate. In addition, there are institutional review boards at every university whose goal it is to keep patients and research subjects in well-done clinical trials safe. That is their primary goal. And the IRBs – institutional review boards – are very involved with making sure that clinical trials are appropriate and that the conduct of clinical trials is appropriate.

Addressing Common Myths About AML Treatment

Addressing Common Myths About AML Treatment from Patient Empowerment Network on Vimeo.

AML expert, Dr. Jessica Altman, discusses common myths surrounding available AML treatment options, stem cell transplant and how leukemias are classified.

Dr. Jessica Altman is Director of the Acute Leukemia Program at Robert H. Lurie Comprehensive Cancer Center of Northwestern University. More about Dr. Altman here.

See More From The Fact or Fiction? AML Series

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What is Targeted AML Therapy?

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AML Treatment and Side Effects Program Resource Guide



Dr. Altman, let’s talk about some AML treatment myths floating around. I’ll throw some stuff out there, you let me know if you’ve heard this. “Leukemia is one disease.”

Dr. Altman: 

So, I have heard that. Leukemia is actually a number of different diseases, and it’s very heterogenous. There are acute and chronic leukemias. The acute versus chronic really depends on a couple of factors. The biologic factor is the presence or absence of 20% loss or more in the bone marrow, but that also coincides with how patients present clinically. Acute leukemias tend to present more acutely, more rapidly. And chronic leukemias tend to be a bit more indirect. And the treatments are very different for those entities. 

There are also myeloid or lymphoid leukemias, so there’s Chronic Myeloid Leukemia and Acute Myeloid Leukemia and Chronic Lymphocytic Leukemia and Acute Lymphoblastic Leukemia. So, those are the four major categories. We’re talking about Acute Myeloid Leukemia today. Within Acute Myeloid Leukemia, there are multiple different types of Acute Myeloid Leukemia that are really now best categorized by history – patient history – and the molecular and cytogenetic abnormalities of the disease. 


Now, we’ve already learned about a bunch of them. So, “There are limited treatment options” is definitely a myth. Correct, Dr. Altman?

Dr. Altman: 

So, we have had a major growth of the number of treatment options available for Acute Myeloid Leukemia really in the last couple of years. It’s been a very exciting time for practitioners and for our patients that we have now a number of new therapies. So, there is not just one treatment available. In fact, the conversation regarding treatment options becomes quite extensive with patients and their families, because there are choices. And that’s why consideration of goals in the intent of treatment becomes even more important. 


Here’s another one: “Stem cell transplant – the only chance for cure.”

  Stem Cell Transplant, also called a bone marrow transplant, is a procedure in which healthy blood stem cells are used to replace damaged or diseased bone marrow. This procedure can be used to treat certain types of blood cancers.

Dr. Altman: 

Okay. So, that is also a myth. There are certain types of Acute Myeloid Leukemia where stem cell transplant is the most appropriate treatment once the disease is in remission if the goal of the patient is of curative intent. Stem cell transplant is not appropriate for every individual, and for some types of Acute Myeloid Leukemia, stem cell transplant is not considered. 


What kinds of things do you think about when you’re considering a stem cell transplant with a patient? 

Dr. Altman: 

So, again, I go back to patient goals and understanding their goals of treatment. A stem cell transplant is among the most medically intensive procedures that we have. It is also not just a treatment that occurs over a short time. While the actual transplant is a relatively limited hospitalization and the administration and infusion of stem cells and preparative chemotherapy, it is something that can continue to have side effects and alterations in life quality that can persist for months to years afterwards. 

So, that’s one aspect of things that we talk about regarding stem cell transplant. And really understanding what the benefit of transplant is in terms of a survival advantage, versus what the risk and the cost in terms of toxicities are. And that’s the basis of a lot of the conversations we have.


Sure. Here’s one more: “AML patients require immediate treatment.”

Dr. Altman: 

Sometimes AML patients require immediate treatment, and sometimes they don’t. And that depends on the biology of the disease. How high is the white blood count when the patient comes in? What are the best of the blood counts? Is the patient having immediate life-threatening complications of their acute leukemia? 

And there’s some forms of acute leukemia that require immediate therapy to prevent complications, and there’s some forms of acute leukemia who present an extreme distress from their disease, but there are many patients who present with acute leukemia, and we have time to get all of the ancillary studies back – the studies of genetics and the molecular studies1 – to help further refine the conversation, and further design an appropriate treatment strategy. 


What else? What do you hear from your patients that you feel is maybe a misconception or something they’re not quite understanding about the AML?

Dr. Altman: 

So, I think one of the biggest things that I would like to mention is that response rate and cure are not the same. So, it is possible for one to be treated for Acute Myeloid Leukemia and the disease to enter remission, and yet still not be cured of their disease. 

Acute Myeloid Leukemia is a disease that frequently requires additional cycles of treatment or a stem cell transplant after the initial induction therapy to be able to have the best chance for a long-term cure. So, response and cure are not the same thing.

5 Steps To Success: A Migraine-sufferer’s Guide To Coping With College Life

College is a unique and fleeting moment is the scheme of one’s life. As well as being fun-filled, socially-engaging and eye-opening in equal measure, it can be chaotic, stressful and exhausting. If you suffer from migraines, the college environment is certainly one that will need to be managed if you want to get the most from this (probable) once-in-a-lifetime experience. With that in mind, here are five important steps you can take to make your experience that more memorable and productive.

Don’t keep it a secret

Suffering from migraines, as any sufferer knows, can be deeply debilitating. Like any illness of chronic condition, it limits your productivity at certain times, and can set you behind the curve. Quite simply, make sure that you share your condition with everyone who needs to know. That includes roommates, classmates, friends and lecturers/tutors. Never pretend that everything is OK, even when it is not, because that immediately means that you must cope of your own, and although you feel you can do that, is a problem shared not a problem halved?

“Think of the benefits that can come with sharing your condition with roommates, for example. They can then begin to adapt their behaviors to a way which facilitates your good health, and can assist you when help is required. Share with them what it is you need, and let them help you build a support network,” says Sheila Lee, a psychologist at Academized and Revieweal.

Speak with professors

Your main objective at college will be to learn, study, and obtain the qualification you are looking for. To this end, make sure that you speak with academic staff at the beginning and explain to them how your migraines manifest and what they allow and don’t allow you to do. Quite often understanding staff will assist in facilitating a study program which maximizes your potential. Even if it is just extending a deadline because you are laid-up with a migraine, this will be of incredible help to you ads a sufferer.

Understand your limitations

 For many migraine sufferers, the condition can be made worse when limits are not respected. Of course, there are other times when a migraine arrives at a most unexpected time, but try to live in a way that facilitates your health. So, ensure that you are getting enough sleep, that you are eating healthily, and that you getting the required amount of exercise and fresh air.

“There is always a temptation at college to slip into bad habits, and to live to excess with the alcohol and fast-food intake, while burning the candle at both ends. It’s true that some individuals can manage this load, but most people will suffer as a consequence, either in their health, both physical and mental, and in their academic achievement. If you suffer from migraines, this type of lifestyle will absolutely not suit your needs,” warns Sandra Wright, a health writer at UKWritings and Essayroo.

Develop healthy routines

 Similarly, college life can be become one lacking routine, but migraine sufferers often need the crutch of build-in habits which maximize health. Roommates can help here by respecting your needs, but once again it is important to share what they are, and when there are danger signs that you need to be left alone. Develop a routine for when you actually suffer a migraine, allowing others to become familiar with what your routine is so they can respect your boundaries.

Develop a support network

As well as those all-important roommates and professors, develop relationships with other people who can be advocates for your needs. In class, develop mutually respectful relationships where you can assist in gathering notes or other resources when someone misses a class for whatever reason. As a migraine sufferer, be realistic and accept that there will be times when you need to miss a class and have a plan in place for what happens then. Do the same for others so it becomes an environment of respect and assistance. Similarly, if you are part of a social group or sports team, foster relationships which offer you support in your time of need. This again requires being honest about your condition – going it alone is just not an option.

Examining the Link Between Gestational Diabetes and Breast Cancer

Approximately 12% of all U.S. women will develop invasive breast cancer during the course of their lives. There are a number of common risk factors associated with breast cancer, such as excessive alcohol consumption, obesity, genetic mutations like BRCA1 and BRCA2, and a family history of breast cancer.  In recent years, the link between diabetes, and particularly gestational diabetes, and cancer has been examined more closely to determine whether this group of women are especially at risk. A better understanding of gestational diabetes and its long-term effects make it significantly easier to understand its link to breast cancer.

What exactly is gestational diabetes?

Gestational diabetes develops during pregnancy and can, when untreated, cause health complications for mother and baby. When a woman has gestational diabetes she will display high blood sugar levels that typically return to normal after the pregnancy. Although any complication during pregnancy can be alarming, it is important to note that gestational diabetes can generally easily be controlled through a healthy diet, regular exercise, and in extreme cases, medication. While gestational diabetes does not necessarily result in serious complications, it is important to be aware of the risks for both mom and baby.

The link between gestational diabetes and breast cancer

Although women with gestational diabetes do not present an increased risk of breast cancer according to studies that have been conducted, it does increase their risk of contracting type 2 diabetes later on. In fact, up to 10% of all women who had gestational diabetes will develop type 2 diabetes according to the National Institutes of Health. This can occur anywhere from within a few weeks after delivery to months or even years later.

Type 2 diabetes proven to increase breast cancer risk

The risk for developing breast cancer is significantly higher among women with type 2 diabetes according to findings published in Diabetes Care. Postmenopausal women above the age of 50 are most at risk with a 27% increased risk of breast cancer. Type 2 diabetes triggers a number of changes in the body such as high insulin level, high glucose levels, and increased inflammation that may increase breast cancer risk. The connection between type 2 diabetes and breast cancer may also be a two-way street as breast cancer survivors could be at an increased risk of developing diabetes following chemotherapy.

Despite gestational diabetes not having a direct impact on breast cancer risk it can, in a more indirect way, increase the risk. By following a healthy lifestyle after a gestational diabetes diagnoses it is possible to reduce the risk of type 2 diabetes later in life which has directly been linked to the onset of breast cancer.

What is Acute Myeloid Leukemia?

Introduction to Acute Myeloid Leukemia

If you have been diagnosed with Acute Myeloid Leukemia, or someone close to your heart has been, you may be understandably concerned or fretful. Regardless of the type or where it appears in the body, cancer is one of the greatest causes of concern.

Cancer is the accumulation of abnormally proliferating cells that form an abnormally growing mass called a tumor. The cancer cells in a tumor grow and divide rapidly and are no more under regulation by the normal signaling mechanism.

Typically, cancer may be either benign or malignant. Benign cancer cells remain confined to the area of origin (such as a skin wart). Malignant cancer means the unregulated cells invade the surrounding structures and eventually spread throughout the body via the circulatory or lymphatic system. Eventually, malignant cancer compresses vital structures and compromises their functions.

What is Acute Myeloid Leukemia?

Acute Myeloid Leukemia (AML) is a cancer of the blood and bone marrow, as suggested by the term Leukemia. Bone marrow is the spongy tissue within the bone where blood cells are produced.

In this cancer, too many immature white blood cells form and interfere with normal blood cells. AML affects myeloid cells, a group of blood-forming progenitor cells that mature into various blood cells such as Erythrocytes (red blood cells that supply oxygen, the platelets that clot blood after an injury), Monocytes, Basophils, Macrophages, and more.

AML is a malignant blood cancer. It is referred to as “acute” because the condition progresses rapidly.

You might hear your doctor refer your condition with names other than AML. Don’t get confused if your healthcare practitioner refers to it with the following names—all secondary terms for the same condition, Acute Myeloid Leukemia:

  • Acute myelogenous leukemia
  • Acute myelocytic leukemia
  • Acute granulocytic leukemia
  • Acute non-lymphocytic leukemia

The 5-year survival rate of AML is approximately 24% for people over 20 and about 10-15% in patients age 60 years and above. For people younger than 20, the 5-year survival rate is about 67%. Once diagnosed with AML, seek treatment as soon as possible because this is a rapidly deteriorating condition that spreads quickly to other parts of the body such as:

  • Spleen
  • Lymph nodes
  • Liver
  • Brain and spinal cord
  • Testicles

Now that you’ve understood what AML is, let’s talk about what causes AML, the symptoms associated with it, its treatment and post-treatment effects.

Causes and risk factors of AML

The exact reason why someone develops AML is not completely understood. However, researchers claim certain risk factors predispose a person to the condition, including:

  • Increasing age
  • Gender (males are susceptible to developing AML than females)
  • Exposure to toxins such as tobacco smoke
  • Exposure to certain chemicals like benzene (a solvent present in industrial emissions and petroleum refinery waste), detergents, pesticides, etc.
  • Exposure to Ionizing radiation
  • History of autoimmune disease (e.g., Psoriasis, Rheumatoid Arthritis, Autoimmune Hemolytic Anemia, Aplastic Anemia, etc.)
  • Medications of autoimmune disease (e.g., corticosteroids, anti-inflammatory agents, and immunosuppressive agents)
  • Chemotherapy for the treatment of other malignancies
  • Pre-existing disease or syndrome (e.g., Down’s Syndrome)
  • Infections (tuberculosis, pneumonia, intestinal infections, septicemia, hepatitis C, etc.)
  • Underlying genetic predisposition (e.g., family history of AML)

Signs and symptoms of Acute Myeloid Leukemia

The World Health Organization (WHO) classifies and categorizes AML and its symptoms into different groups based on the affected cell type and the causative factors. Early symptoms are generally flu-like and include:

  • Fatigue
  • Anemia
  • Anorexia
  • Fever
  • Lost appetite
  • Weight loss
  • Sweating at night

AML can involve the red blood cell line and may have the following additional symptoms:

  • Dizziness
  • Weakness
  • Pale skin
  • Irregular heartbeat
  • Cold peripheries
  • Shortness of breath
  • Headache

If you have the type of AML that affects the white blood cells, you will be vulnerable to serious infections that take a long time to treat. The following symptoms will be noted:

  • Fever
  • Weakness
  • Muscle aches
  • Diarrhea

Having AML with malfunctioning platelets leads to inappropriate blood clotting with the following symptoms:

  • Easy bruising
  • Bleeding gums
  • Bleeding that is hard to impede
  • Small red spots under your skin caused by bleeding
  • Nose bleeding
  • Sores that are difficult to heal

Invading leukemia spreads to other body parts, impairing their function too. The symptoms of AML in later stages are:

  • Balance issues
  • Blurring of vision
  • Bone or joint pain
  • Numbness in your face
  • Seizures
  • Spots or a rash on your skin
  • Swelling in your belly
  • Bleeding gums
  • Swollen glands in your groin, underarms, neck or superior to your collarbone

If you have any of the symptoms above, set an appointment with your healthcare professional as soon as possible. You might be suffering only from influenza or some other minor condition, but you should always rule out serious causes of concern. Explain your symptoms to your doctor who will take all the necessary steps to screen you for AML.

Diagnosis of AML

Your doctor may recommend specific tests to screen you for AML, as follows.

1.   Blood tests

Patients with AML have increased numbers of white blood cells (WBCs) and reduced numbers of red blood cells (RBCs) and platelets. Immature cells called blast cells (myeloblasts) that are normally present in bone marrow but not in blood are also detected.

2.   Bone marrow test

For the confirmation of diagnosis, your doctor will recommend a bone marrow test. In this biopsy a sample is taken from your marrow using a needle (commonly from the hipbone) and sent to a lab for testing.

3.   Other tests

Other tests such as the lumbar puncture (spinal tap) and genomic testing might also be required. The WHO classification of AML guides diagnosis and directs the treatment plan.

If your doctor confirms that you have AML, you may need to undergo further tests to determine its subtype and the extent of the spread of cancer in your body. The subtype of AML is established by examining the appearance of your cells under a microscope. Another special laboratory test may also be needed to identify the characteristics of your cells. Determination of your AML subtype directs the doctor for the type of treatment you will need.

Treatment plan for AML

The treatment of AML depends upon factors like your age, overall health status, the subtype of AML and your tolerance status. Although AML was previously an incurable condition, it is now cured in 35-40% of patients who are younger than 60 years of age. For the elderly, the prognosis is still evolving with time. The treatment is pursued in two phases.

1.   Induction therapy

In the first phase, the leukemic cells in the blood and bone marrow are targeted. The aim of this phase is to achieve complete remission (CR) of cancer cells. Intensive treatment is given using an anthracycline and cytarabine regimen. Daunorubicin or Idarubicin is given at a typical dose of 60-90mg/m2 and 10-12 mg/m2 respectively on days 1, 2 and 3 of the treatment along with a cytarabine infusion (100 mg/m2/daily for seven days (days 1 to 7). However, your oncologist will determine the exact dose needed for you.

Remission Induction Therapy, on the other hand, does not eliminate all the cancerous cells altogether. This makes further treatment imperative to prevent a relapse of the condition. It has been found that in 65%–73% of young patients complete remission is achieved with this standard induction therapy while 38%–62% of patients over 60 years achieve CR. Patients having a mutation in FLT3 are treated with FLT3 inhibitor midostaurin along with the standard induction therapy.

In elderly patients, hypomethylating agents including decitabine and azacitidine are found to be beneficial as initial induction therapy and for relapse. Two to four cycles of this therapy are needed on an average to achieve an optimal response.

Patients who are suspected of acute promyelocytic leukemia (APL) are to be treated with all-trans retinoic acid (ATRA) even before confirmation of the diagnosis. This will prevent the development of coagulopathy and disseminated intravascular coagulation (DIC) induced by APL. The outcomes of complete remission are even better if arsenic (ATO) is used in combination. Chemotherapy should also be started as soon as the diagnosis is confirmed.

During this phase, the levels of WBC and fibrinogen, prothrombin time and partial thromboplastin time should be monitored at least twice a day, supported by aggressive transfusion if needed. In patients having a high WBC count, steroids should be given prophylactically particularly when ATRA-ATO combination therapy is being used to prevent differentiation syndrome.

2.   Post-Induction therapy

The second phase is called post-induction therapy, consolidation therapy, maintenance therapy or intensification. It aims to get rid of the remaining cancerous cells of AML and is critical to prevent a recurrence.

In general, two main approaches to consolidation therapy exist:

  1. ChemotherapyChemotherapy is used in both the phases of AML treatment. Medicines are used to kill cancer cells. In this process, normal blood cells are also destroyed so a hospital stay is crucial for close observation and management of the patient.For patients younger than 60 years, four cycles of intermediate-dose of cytarabine is given at 1.5 g/m2 two times a day, on days 1, 3 and 5. This will effectively prolong remission and improve survival. However, transplantation is only reserved for a relapse.For patients more than 60 years, the standard dose of cytarabine used is 500–1000 mg/m2.
  2. Hematopoietic stem cell transplantation (bone marrow transplantation)A bone marrow transplant is typically done for particularly fit patients with intermediate to high-risk disease after complete remission. This remains the most effective long-term treatment for those who successfully get cured in the first round. Transplantation is considered for patients who:- Do not have any other co-morbidities
    – Have successfully achieved complete remission
    – Have a suitable donor available

The oncologist decides whether to opt for consolidation therapy or transplant, a decision largely individualized to each patient. Consolidation itself poses a risk of mortality or morbidity. A reduced-intensity allogeneic hematopoietic stem cell transplant may be considered for patients who are ineligible for a myeloablative transplant. This strategy has been found effective in older eligible patients and is becoming more common and clinically more accepted.


Relapse occurs when major or minor remnants of leukemic cells expand that were present at the time of diagnosis or through newly developed mutations over time. Early relapse (within six months of the first complete remission), has a poor survival rate.

The prognosis is better for a second complete remission with late relapse, for those at a young age and in those with favorable genetics. A relapse therapy called salvage chemotherapy is done using Cytarabine, Fludarabine, Idarubicin as well as an MEC combination (including Mitoxantrone, Etoposide, and Cytarabine). For APL, the standard re-induction therapy includes the use of arsenic with or without ATRA.

What side effects should you expect?

Chemotherapeutic drugs work by killing rapidly dividing cells in your body. Unfortunately, these drugs also affect and destroy normal healthy cells. This affects the normal functioning of every organ in the body. The expected side effects are as follows:

  • Nausea and vomiting
  • Fatigue
  • Diarrhea and constipation
  • Hair loss
  • Mouth sores
  • Loss of appetite
  • Easy bruising
  • Increased risk for infections

Fortunately, these side effects are temporary and go away once the treatment is complete. Your doctor will treat you symptomatically to ease out side effects as possible.

Further, post-transplant immunosuppressive drugs help you avoid rejection and further complications. A suppressed immune system makes you vulnerable to other sprouting illnesses like infections, poor wound healing, and so on. Be watchful of your environment.

Coping with AML

Coping with cancer is extremely difficult in itself. On top of that, facing the world is another dilemma you need to face. Try to accept your condition and talk to your family and friends about your diagnosis. Let out your fear and gather yourself back. Stay composed and work things out so that everything falls in place in the best possible way for you.

Keep yourself protected from pollution and from people who can be potential sources of transmitted infections like flu, cough, tuberculosis (TB), and so forth. Viral infections would further complicate your already debilitating health. Some ways to avoid these complications are to use a face mask while going out, wear gloves before touching any potentially contaminated surface, wash your hands often, and eat whole organic foods.

Lastly, have faith in yourself and never stop fighting. Remember that after a deep dark night, there can be sunshine.




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What Patients Should Know About CT Scans and MRIs

As patients, we normally rely on our doctors to tell us which tests and medications to take for the betterment of our health. Rarely do we question them since they know a whole lot more than most of us when it comes to medical ailments and overall health. However, that doesn’t mean you can’t find out more about the various suggestions doctors make.

If you have an ailment in the body and your doctor finds it hard to determine exactly what it is, they will likely ask you to get either a CT scan or MRI done. The tests are used to provide a detailed view of your internal body to help determine the ailment. We breakdown the two for your better understanding:

CT Scans

CT scans provide imaging using x-rays at different angles. This scan is more in-depth as compared to an x-ray. X-ray tests use a beam of radiation from a set angle and display the image. Since a CT scan uses a series of radiation beams at different angles, it slices the same image up, giving a 3D view so doctors can understand the ailment better. With the help of a computer, an image is produced. CT scans can help determine ailments such as cancer, bone injuries, and chest and lung ailments.


Magnetic resonance imaging (MRI) uses a magnetic field instead of radiation and provides a more detailed image of the body which also includes soft tissues along with the internal body. It is used to help diagnose the following:

  • Brain injury
  • Cancer
  • Damaged blood vessels
  • Spinal cord injury
  • Stroke
  • Multiple sclerosis
  • Bone infections
  • Damaged joints
  • It can also be used to ensure that various organs are healthy.

Both methods are noninvasive and rely on heavy technology. But when it comes to CT scans, more and more hospitals are opting for mobile CT scanners, which make it easier for them to manage.

Getting Ready for the Test

Preparing for CT Scan and MRI is slightly different. With CT scans, your doctor may recommend you take a contest dye. The dye helps highlight the scanned region more and is generally consumed when scanning the abdomen. It is important to notify your doctor if you have any allergies because you may react to the dye. If you’ve previously had reactions to prednisone (a steroid), iodine, or seafood then the doctor should be immediately notified. Other than that, the doctor may ask you not to drink or eat several hours before the test.

For an MRI, the one thing you need to make sure is that you are not wearing anything that can be detected by magnets. This means, no jewelry, watches, hearing aids, glasses, and other items that may have a metal can be worn during the test. In some cases, a gadolinium dye may be recommended which is injected into the hand or arm. The dye highlights certain details in the imaging and rarely results in any type of reaction. The test can be lengthy for some as it takes anywhere from 30-45 minutes, so if you are claustrophobic, you may want to discuss that with your doctor since you are required to stay in a closed space for that period.

The Test

  • CT Scan: You will be asked to put on a robe and remove jewelry and other metal objects so they don’t have any impact on the image produced. The scanner itself is a doughnut-shaped machine and you lie on a flat table in the middle. The table starts to move back and forth and x-ray tubes fitted into the scanner send out beams and different angles. They pass through your body to the other end of the scanner. The test is painless but make sure you are comfortable because you will be asked to stay still as the scan is going on.
  • MRI: The MRI machine is a long narrow tube that is open at both ends. Like in a CT scan, you lie down on a flat movable table that slides into the tube. As you slide in, the table stops at the specific part of the body being examined and a magnetic field is created and radio waves are directed to the body. The machine does make tapping and thumping noises, so the technician will likely offer earplugs to block it out.

Understanding the Test Result

After getting either a CT scan or MRI done, you will need to consult your doctor. Unless you are a trained doctor, the images will make little to no sense to you. You will need to consult a radiologist that can explain the results to you. In case of an ailment, they will usually recommend you consult a specialist, depending on the ailment, that can assist you further.

As a patient, it is important for you to understand the tests and treatment doctors recommend. Most of the time, you can consult your doctor and they will be more than willing to give you the information you need. Knowing makes it easier for you to undergo the tests and treatments with a little more ease.