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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.

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Transcript:

Patricia:                      

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.

Patricia:

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.

Patricia:                      

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.

Patricia:

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.

Patricia:

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.

Patricia:

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.

Patricia:                      

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:              

Sure.

Patricia:

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.

Patricia:                      

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.

Patricia:                      

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.

Patricia:                      

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.

Patricia:                      

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.

Patricia:                      

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.

Patricia:

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.

Patricia:

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.

Patricia:

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.

Patricia:

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.

Patricia:

And Dr. Google can really get involved here.

Dr. Edelman:              

Yeah. That’s always a problem, yeah.

Patricia:

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.

Patricia:

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. 

Patricia:                      

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.

Patricia:

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.

Patricia:                      

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.

Patricia:                      

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.

Patricia:                      

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

Dr. Edelman:              

You’re welcome. My pleasure.

Patricia:

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 powerfulpatients.org. That’s powerful patients with an S .org. I’m Patricia Murphy, your host. Thanks. 

The Empowered Lung Cancer Thriver and Expert Chat

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


Transcript:

Laura Levaas:

Hello, and welcome to this Patient Empowerment Network program, the empowered cancer survivor and expert chats. I’m your host, Laura Levaas, the lung cancer community manager for Patient Power, and a two-year survivor and thriver of lung cancer. This program is produced by Patient Power. We thank Celgene Corporation, Novartis, and Pfizer for their financial contributions to this program. They don’t have editorial control, but we do really appreciate them helping us make this program happen.

So, our guest today is Dr. Ross Camidge, the Director of Thoracic Oncology at the University of Colorado here in Denver. He’s also one of the top doctors in the U.S. for the very type of lung cancer that I have. It’s a rare mutation called ALK positive. And hopefully he can talk about that a little bit more later.

Dr. Ross Camidge:

We can talk about that until the cows come home.

Laura Levaas:

That’s good. Well, I’m excited to be interviewing somebody who is in the same town as me. So, you’re right down the road.

Dr. Ross Camidge:

Yeah, and we’re doing it virtually. Isn’t that crazy?

Laura Levaas:

It is crazy. So, we’re both in Denver, but we’re both online. So, I hope you’re having a good day. And thank you for joining us. So, can you estimate how many lung cancer patients you’ve worked with during your career?

Dr. Ross Camidge:

More than 1,000, I would have thought. So, I tend to see about 30 people a week, of whom about two or three of them are new each week. And then you can do the math. And then I’ve been here…it’ll be 15 years in October. So, someone really clever with a calculator can do that calculation, but it’s several thousand.

Laura Levaas:

That’s a lot.

Dr. Ross Camidge:

Yep.

Laura Levaas:

Is there a case that stands out to you in your career? Maybe somebody who beat the odds of their prognosis, or somebody that had a very interesting or unusual case?

Dr. Ross Camidge:

Well, you know, it’s funny. I mean, there are lots of people who I’ve looked after who’ve inspired me in different ways. But the ones that I keep thinking about the young patients who were diagnosed before we knew about all these molecular sub-types of lung cancer.

And I remember one young guy. He was 21 years old. He was really into skateboarding and art. And his parents were busy getting a divorce at the time. And it was a total disaster to have a diagnosis of lung cancer, and he’s stuck in the middle. And his disease was incredibly aggressive, and he didn’t survive very long. And somewhere in me, it’s like, well, he must have had something. He must have had ALK; he must have had ROS1.

And these things weren’t even described at the time. And part of life is about timing. So, nobody wants to have lung cancer. But it’s a much better time to have lung cancer now than it was last year, and certainly last decade.

Laura Levaas:

Right. So, there is hope for people who are diagnosed now?

Dr. Ross Camidge:

Well, I mean, I think that the best example of that is, people who now have Stage 4 lung cancer, the questions they have to ask are, “Shall I go for promotion in my job? Shall I go on this fun vacation? Am I gonna marry this person?” The same things that we all struggle with before a diagnosis of lung cancer. Because there used to come a time when you got a diagnosis of lung cancer, and the same conversation at least that the doctor was concerned was, “You’re about to drop down dead.” We phrased it differently, but you get the drift.

And now, those are completely separated by an unspecified amount of time, in the same way that we’re born and we die at some point in the future, and we don’t quite know when that’s gonna be. And so, we don’t have the two things – “Hi! Mrs. Jones! You’ve got a bouncing boy and they’re about to drop down dead.” Now, they’re separated by life. And we are gradually increasing the distance between those two events.

Laura Levaas:

I think that’s amazing. And this is a good segue, actually, for me to tell a little bit about my story. I don’t wanna get too far into the weeds. But my story, I think it was unique because I had a threemonth prognosis, basically, by the time they got a hold of me. I’d been misdiagnosed for about a year, which is pretty common, I think, with –

Dr. Ross Camidge:

Yeah.

Laura Levaas:

– lung cancer. You know, allergy symptoms, some migraine symptoms. And mine was actually caught, oddly enough, during a breast cancer screening. Because my mother is a breast cancer survivor, and she was diagnosed very young. So, my doctors have always been really proactive about that. But my original prognosis was three months. And that’s before they knew that I was ALK positive. So –

Dr. Ross Camidge:

So, who told you that you had three months?

Laura Levaas:

It was –

Dr. Ross Camidge:

That’s what drives me crazy, some well-meaning person in the emergency room.

Laura Levaas:

Yes. And I think it’s because when they discovered what I had, I had 50 brain mets and 50 spine mets, and my brain was swelling. And they were telling my family, “We’ve gotta get her into whole-brain radiation right away.”

We found out about two weeks later that I was ALK positive. So, they stopped the radiation, and I went right into taking Alectinib, which is a newer drug. And it was approved by the FDA I think about three months after I started taking it as first line for ALK.

Dr. Ross Camidge:

It’s all about timing.

Laura Levaas:

And then it stopped – yeah. Yeah. So, it’s kind of – I feel a bit like a champion. Because they said, “Well, you have three months.” And that can be a real bummer. And it’s a real shock to friends and family and my boyfriend at the time, who’s no longer. But here I am, 26 months later. And I feel great. And nobody ever thinks that I’m sick. They’re always shocked to find out that I have lung cancer. So –

Dr. Ross Camidge:

I think you’ve done great. And you’re still doing great.

Laura Levaas:

Thank you. And let me explain to our audience how I met you. One of the things that helped me have a positive outlook on being diagnosed with lung cancer is, No. 1, because I have this mutation, there was a targeted therapy available to me. And so, within six months, all of the cancer ground to a halt.

And I was basically able to resume most of my normal activities. I could drive again. I could go out to eat. I could do some normal things. But a friend of mine told me that there was a Facebook group for my specific type of cancer. And it was so valuable, and it helped me sort of like find my people. I refer to them affectionately as mutants because we’re all mutants together. But we share information. And they told me about your second opinion program, which I hope is okay to talk about on –

Dr. Ross Camidge:

Sure.

Laura Levaas:

– this program. But that’s how I found out about you. And you’re now my oncologist. And I’m in a Phase 2 clinical trial for a drug that’s new to me. And I’m very excited about that.

Dr. Ross Camidge:

You haven’t started it yet, have you?

Laura Levaas:

I have. I started it last week.

Dr. Ross Camidge:

Oh, you started last week, didn’t you?

Laura Levaas:

I did. I did. The first couple days, I felt weird. But now, I feel great. So, for those –

Dr. Ross Camidge:

Yeah, that’s fantastic.

Laura Levaas:

– that are watching, just know I do think having a positive attitude will help you through those really tough times when you’re feeling low. Reach out to your sub-group. Reach out to the people who have what you have. Because they’ve been walking that path, and they can help you.

Dr. Ross Camidge:

I mean, I think that one of the things is – I mean, it’s the same like when doctors talk to doctors. You can do the shorthand. You don’t have to explain what you’ve got and what it means. You don’t have to explain to me that you weren’t a smoker. You can just sort of jump in and say, look, this is the stuff that’s happening with me. And they understand.

Laura Levaas:

Absolutely. Absolutely. So, I am going to ask you a couple of quick questions. And then we got a lot of audience questions for you. So, I hope you’re ready.

Dr. Ross Camidge:

Yep. Bring it on.

Laura Levaas:

Lots of really good questions. So, before we transition into those, I wanted to ask whether you have noticed a mindset shift? You mentioned right at the beginning that this is the best time to be diagnosed with lung cancer because there are options. But are you noticing a mind shift in your patients?

Dr. Ross Camidge:

Yeah, I mean, I think there is. I mean, I think lung cancer has gone from being – or let me rephrase that. Certain sub-groups of lung cancer has gone from being this kind of embarrassing thing, that you were sort of hidden in a closet, and nobody knew a lung cancer survivor because they didn’t exist – to now, I can show a room full of people and you can’t pick out who’s the lung cancer patient and who’s their significant other in the picture because everybody looks the same. And that, to me, is huge success.

So, I mean, one of the things we did last year – and I may have shown you the picture that we have up in the clinic – is we actually had a survivors’ celebration.

Laura Levaas:

Awesome.

Dr. Ross Camidge:

And to get your invite, you had to be at least five years out from your diagnosis. And we invited 400 people. Now, to be honest, we messed up the timing, and we sent the invites out about two weeks late. But we still had about 100 people turn up –

Laura Levaas:

That’s great.

Dr. Ross Camidge:

– which was pretty awesome. And we took a big picture. And it’s framed and sitting up in the clinic, for the simple reason that when you’re first diagnosed, you know these people exist, but you don’t believe they’re real. And I wanted to be able to come outside and say, “See that guy there? Well, he’s 10 years out. And look, he still looks fine, and he’s leading a normal life.”

So, I don’t mean everybody’s gonna do that. But it’s gone from being this fantasy – I might win the lottery – to, well, I might graduate from high school. I mean, it becomes a much more realizable dream.

Laura Levaas:

Right. Well, what questions do you think patients should be asking when they’re first diagnosed? They go to the doctor. They’re like, “You have lung cancer.” What should a patient ask?

Dr. Ross Camidge:

Well, some of the basics are, what’s the stage of the cancer? How far has it spread around the body? So, usually, at least in the USA, people are getting a PET scan and an MRI of their brain.That’s the kind of standard bread and butter. I mean, 10 year ago, probably the most common thing I would encounter in the second opinion is somebody who wouldn’t have scanned the brain. They were waiting until someone had symptoms before they scanned it, which was like, well, you’ve lost a few neurons by then.

Now, probably the big thing is, have they done molecular testing? And I think the education has been, that’s not a uniform box. If you find something, that’s great. But if somebody says, “Well, you don’t have a mutation,” the next question is, “Well, what have you looked for?” Because if you haven’t looked for A, B, and C, you don’t know that that’s not there. So, the things that we test for have become more expansive.

And then the last one – and it’s hard not to say this without sounding like a complete jerk, but I’m going to do it anyway – is that the disease has become super complex and super specialized. And you don’t have to have all of your treatment with a thoracic specialist, but you should have a relatively early appointment with a thoracic specialist to just check that you’re on the right path.

Laura Levaas:

Good. That’s –

Dr. Ross Camidge:

Those are the three things.

Laura Levaas:

Okay. Those are really, really good things to ask. I wanted to ask also how long you’ve been involved in lung cancer clinical trials in the development of new medicines?

Dr. Ross Camidge:

Well, I’ve been here, as I said, nearly 15 years. I trained before that amongst other places in Edinburg, in Scotland, which is where I did most of my training. And that’s where I first encountered lung cancer patients. And it was actually probably the very first – so, you were taken round to different centers in your training. And I landed in lung cancer. And I really liked the patients. And I kind of felt that they were … they were very undemanding. Often, many of them had smoked, and they were kind of feeling a little embarrassed. And so, they made you want to step towards them because they were kind of stepping away from you. And I also felt that it was kind of poised for a breakthrough. So, that was kind of how I got involved.

And then since I’ve been here, when I first arrived in Colorado, it was pretty well known for lung cancer. But it had not a huge clinical program. I think when I arrived, they put nine patients a year on clinical trials. And within a few years, we were putting more than 100 on. So, I really helped to build that. And then with my colleagues here, we’ve been able to build the program.

Laura Levaas:

What’s the best advice you can give someone who is newly diagnosed with cancer?

Dr. Ross Camidge:

Well, the first thing is, for those of you who’ve seen The Hitchhiker’s Guide to the Galaxy, the first thing is, don’t panic.

Laura Levaas:

That’s good advice. That’s good advice.

Dr. Ross Camidge:

The thing is, what you do is, you get diagnosed. And there’s a period of time where the room – you just can’t hear anything, and you feel distant from it. And what you’ve gotta do is, you – absolutely, you can wallow in self-pity for a period of time. And then you have to get up and move on. And that’s when you say, okay, this is a problem like anything else in life. And I will figure out the best of all possible solutions.

Laura Levaas:

Absolutely. Conversely, Terry wanted to know, what is the biggest mistake patients make in decisionmaking about treatment?

Dr. Ross Camidge:

Well, listening to people who say you only have three months to live.

Laura Levaas:

Yeah. That’s not good.

Dr. Ross Camidge:

Yeah. I don’t know what – I think perhaps believing that everything you see about cancer on the TV – which is everyone who’s bald and throwing up – must automatically apply to you. Or that that person down the street who died from a brain tumor automatically applies to you. I mean, so, cancer isn’t cancer. There are different diseases. And until you can find out, like you said, your peer group, you don’t know what the truth will be for you. And then you’re still gonna make your own rules up anyway.

Laura Levaas:

That’s true. That’s true. And I was thinking the other day, my needs when I was first diagnosed are very different than what they are now a few years later. Because in the beginning, I didn’t have coping skills. And I just didn’t know what to do. But you do develop them over time. And I remember a woman telling me, “Oh, you’ll figure it out.” And that made me really mad. But I see the wisdom –

Dr. Ross Camidge:

Yeah.

Laura Levaas:

Yeah. I see the wisdom in that now because you do figure it out over time.

Dr. Ross Camidge:

But how did you figure it out? How did you develop those coping skills? … Am I allowed to ask you questions?

Laura Levaas:

Oh, absolutely! Yeah, I think it was helpful, oddly enough, that I wasn’t allowed to drive and that I was in such a bad state. Because it allowed me to sort of withdraw from society for a while, withdraw from my work, withdraw from relationship drama. Because I ultimately ended up breaking up with my partner because he wasn’t capable of handling what I was going through, and he wasn’t supportive. So, all of the things that were familiar to me, like my job, my apartment, I retreated from all of that. And at the time, it sucked. But now, I’m like, that allowed me to have a perspective that was removed from everything. And I just –

Dr. Ross Camidge:

How old was your son at the time when you were diagnosed?

Laura Levaas:

Four.

Dr. Ross Camidge:

So, I mean, there’s an element of where you can withdraw from society, but you’ve got a 4-year-old.

Laura Levaas:

That’s right.

Dr. Ross Camidge:

So, how do you deal with that?

Laura Levaas:

Yeah. Well, I ended up moving in with my sister. Because at that time, I couldn’t drive, and I couldn’t take care of myself. So, I did rely really heavily on her. And their daughter is the same age as my son. So, they were going to school together. I relied very heavily on them, and I’m so thankful for that because that allowed me to just rest and heal. Because in the beginning – not to get too far in the weeds – but I couldn’t watch TV. I couldn’t be on my phone. I couldn’t be on the computer. Just no attention span whatsoever because of whole brain, I think. So, retreating from everything actually was good for me. And I’m also kind of a loner. So, I liked it, being alone too, oddly enough.

Good question.

I have another question from Christine C. She says, how long do you think it will take until lung cancer will be a chronically managed disease?

Dr. Ross Camidge:

Well, I think for some people, it already is. So, I now have 10-year Stage 4 survivors who are still alive and still thriving, to use your word. So, for those people, it’s a reality. And I don’t know – as I said, people will make their own rules – I don’t know how long they will go. I mean, I honestly do not know how long I can control their disease. You just have to stay alive and in the game and hope that breakthroughs will happen.

Now, then the challenge is, okay, “Well, what about me? I don’t have ALK. I don’t have – whatever.” And you go, okay, well, so, everyone – we have to try and replicate the success of the ALK positive population with all of the other sub-types of lung cancer or the ones that don’t even have a label yet. And so, there’s plenty of work to do.

Laura Levaas:

Definitely. Leslie wants to know, what do you see in the near future for treatment of lung cancer? And she lists a couple of things like a fourth generation TKI, immunotherapy – a couple of things that I don’t even know what they are, SHP2, Protex, anything else?

Dr. Ross Camidge:

Yeah. I don’t know what Protex is, but I know what SHP2 is. So, first of all, so, the concept of the fourth generation TKI, I mean, I assume that’s because we have a third generation TKI and therefore, the next one must be called the fourth generation. So, I don’t know that the generations of TKI is going to be the immediate solution.

If I had to say what I think the future is gonna hold, there’s a couple of things. So, one is I think we can – and we’ll use ALK as an example. But really, ALK is this model system that everybody else with lung cancer might like to replicate. So, we’re really good at developing drugs that are great at suppressing one particular pathway that is driving some people’s cancer.

But the cancer still grows eventually. Usually now, with some of the drugs – like the one you’re on and the third-generation drug – is that they’re not growing because they’re turning back on the same pathway. What they’re doing is, they’re growing through some other pathway coming up. So, finding these other pathways, these so-called second drivers, is going to lead to rational combinations of drugs. That’s one way.

The other thing which is kind of the elephant in the room is, well we have these drugs. You have these fantastic responses on the scans. But if you stop the drug, the cancer starts to grow. And if you go back on the drug a week later, it’ll shrink down. So, you clearly haven’t killed all of the cells which are even sensitive to that drug. So, until we can address why we can’t get 100 percent cell kill – that’s a technical term – we’re never gonna deal with the elephant in the room, which is, why can’t we actually cure people?

And that’s a very different situation from, why does the cancer grow three years later? The question is, why, when you walk through the door and you have a great response on the scan, if you had a magic microscope, why is there still one in 1,000 cells left? And that to me is actually the horizon we need to look for.

Laura Levaas:

Okay. Okay. That’s a great answer. A few more questions. Will R. wants to know about a lung cancer vaccine.

Dr. Ross Camidge:

Well, so, you could view that in a couple ways. So, if you think about how we use vaccines, we use them when we don’t have a disease to prevent us from getting that disease. We don’t really use a vaccine when we’ve already got the disease. So, if you’ve got chicken pox, I don’t vaccinate you for chicken pox. I treat the chicken pox. And so, lots of people are trying to develop vaccines, but they’re giving them in the wrong way. They’re giving them to somebody with an established lung cancer, and then they’re surprised that it doesn’t work. But that’s not what vaccines do.

The question is, could we find a way of saying, well, these are the people who are at highest risk for lung cancer, and give them something before they have lung cancer to reduce their risk? And the answer is, maybe. But if you can imagine, that’s a really difficult study to do. It would take years and years and years.

I’ve just come back from something called the World Conference on Lung Cancer, which was in Barcelona – tough life – but the biggest breakthrough there wasn’t about treatment. It was about a study that was actually done in Scotland about screening people. So, we’re pretty familiar with, if you smoke this much, you meet a certain criteria, and you go get a CT scan. But that’s no good if you’re not a smoker. You don’t meet those criteria.

So, they still have to look at a blood test. And they can show that that particular blood test, it wasn’t definitive. It wasn’t, you’re gonna get cancer or not. But it bumped up your risk if you are positive on the blood test to then make that screening even more effective.

Laura Levaas:

That’s awesome.

Dr. Ross Camidge:

And they had some evidence – loose evidence – that it might even work in never smokers. And I think that’s what will come in the future too. And then what if you identify this high-risk group? I’m getting all excited now – all that higher-risk group? Maybe then say, okay, well, why are they at higher risk? Is that the group we give a vaccine to?

Laura Levaas:

Right. And then how would you identify a non-smoker, high-risk group? Can you?

Dr. Ross Camidge:

Yeah, well, so, it’s a work in progress. So, one of the things that they’re starting to do is find some of the mutations which are driving people’s cancer in the blood. Okay? So, the problem is that the sensitivity of the test isn’t very good. So, you can find it when somebody has lots of cancer in their body. But to get the screening, you want to find it when there’s one little ditzel in your lung. So, you have to really turn up the sensitivity.

And I think that’s where the field is kinda going. So, they would know that if they found ALK in your blood, if they made a super sensitive test, that that would be wrong. Shouldn’t be there. And therefore, they would say, you should go get a CT scan. And so, the sensible thing would be, develop a cocktail of tests for every one of the things that drive lung cancer and say, if we find it, that’s bad news. Go get a CT scan.

Laura Levaas:

I like that. A cocktail of tests. Good. Well, hopefully, that will be soon. Two more questions. This is a really great question, actually, from Gail O. Is there a resource for local oncologists to reach out to for information and collaboration about lung cancer? Because as I’m sure you know, some of these smaller centers, maybe those physicians aren’t seeing lung cancer patients. So, they – I don’t wanna say they don’t know what to do, but maybe a patient is not getting the appropriate treatment protocol.

Dr. Ross Camidge:

I mean, that’s a really good question. So, it depends on where you are in the world. So, there are guidelines that NCCN, National Comprehensive Cancer Network – which is a common guideline used in the USA – is updated every few months. And that’s a common thing that a private practitioner could look at. And yet, it’s astonishing how many people sort of still don’t follow that. That’s a guideline. And the trouble with guidelines is, they don’t describe every possible scenario. In terms of how do you –? This may come as a huge surprise to you, but doctors have egos.

Laura Levaas:

No!

Dr. Ross Camidge:

No! So, how do you convince a person who may be a very good general oncologist that they don’t know everything? And that’s really hard. So, it’s not that we don’t necessarily have the resource. But we have to have people feel comfortable, if you like, asking for help. And I think that may be the biggest challenge.

I mean, I’ll give you an example. So, here we are in Colorado. There are probably several hundred medical oncologists in the state, of whom a handful ever send us patients for clinical trials. And you go, well, they must all see lung cancer. Lung cancer’s common. So, why do only some of them send people for clinical trials? Either they’re sending them somewhere else – and that’s okay – or they’re just not asking for help. And that is a huge tragedy if that’s happening.

Laura Levaas:

Yeah. So, is there a resource for local oncologists, like –?

Dr. Ross Camidge:

Do you want me to actually answer the question?

Laura Levaas:

If it’s possible. It’s a big question.

Dr. Ross Camidge:

No. I mean, not in a – I mean, there are lots of separate resources. So, all oncologists are subject to CME, continuing medical education. There are videos they can watch. There are updates of all these conferences. But they have to want to do it. Nobody is getting down and forcing them to do it.

Laura Levaas:

Right. And I think that’s where an empowered patient comes in. An empowered patient will seek out the care that they’re looking for.

Dr. Ross Camidge:

Yeah. I mean, I do lots of second opinions. And for many of my patients, they’re around the world and around the country. And sometimes, their oncologist I form a very close relationship with because we both feel like we’re looking after the same person. And you almost feel like you’re kind of a co-parent. And that’s great because they don’t feel threatened by me, and I don’t feel threatened by them, and we can work together. “Well, this has happened. This is what the scan shows. What do you think? And I’ll do this.” And others don’t. But that’s how it can work well.

Laura Levaas:

Okay. Last question. This person’s name is Parentin B. I’ve never heard that name before. It’s very interesting. Are there recommendations about what patients can do themselves, like supplements, diet, exercise, etc., that could be helpful? And I know when I was first diagnosed, that was one of my first questions. Because my physician said, “Well, eat healthy.” And I was like, “Well, what does that mean?”

Dr. Ross Camidge:

What does that mean? Yeah.

Laura Levaas:

So, I think there’s a glut of, should we do Keto? Should we do Paleo? Should we go vegan? Vegetarian?

Dr. Ross Camidge:

I think one of the things is, what this is actually telling us is that when we’re diagnosed, we want to be part of the solution ourselves. We don’t want to be passive and have people do things to us. And I think the physicians who go, “Well, no. Nah,” I mean, they’re missing out on that need to take some aspect of control of our lives.

And so, some of it, you can channel that energy into becoming empowered and educating yourself about it. Not to the point that you’re obsessed about it, but I mean so that you’re, again – occasionally, I get patients who come in, and you go, “So, what treatment are you on?” And they go, “I don’t know.” And you go, “Well, you’re hardly taking control if you wanna change your diet, yet you can’t be bothered to learn the name of your chemotherapy. That’s not empowerment.”

I think diet is something we can all control in our lives. It can also make you – a diagnosis of cancer makes you vulnerable to anyone who wants to sell you any kind of quack theory. I think most people, at least our cancer dietitians here, would say, you bump up the fresh fruit and vegetables. You don’t have to become a juicer. But fresh fruit and vegetables generally make you feel better. They keep your bowels moving more, which sometimes, some of the treatments can interfere with that. You don’t have to feel guilty if you have a candy bar. But if you minimize the amount of highly processed food you have and the amount of sweets, that’s fine. It’s like anything else. You can have cheat dates. Don’t feel bad about it.

But all of that is kind of subjective. There’s people who are gonna tell you, you have to have cottage cheese and flax seed oil or the Gerson diet and have coffee enemas. I prefer my coffee this way, but –

Laura Levaas:

Me too.

Dr. Ross Camidge:

And there are always testimonials about these things, but there’s very little hard evidence that it actually makes a difference. The one exception is exercise. Actually, there’s quite a lot of data that being a healthy weight – so, not overweight, and just being active. It doesn’t mean you have to sign up for a triathlon, but just going for a walk every day or doing something actually makes people feel better, makes them cope with the treatment better. And there’s even some data that actually survival is improved. So, that’s definitely something that people can do.

Laura Levaas:

Well, those are all really good things. And I appreciate these questions. Many of them came from the ALK positive Facebook group that really helped me cope through some of my tough times. And there are some really smart folks in there, way smarter than me. Probably not as smart as you. But they –

Dr. Ross Camidge:

No! Way smarter than me! They’re all like nuclear physicists and things.

Laura Levaas:

I’m really amazed at the amount of specialized information that I’ve been able to find in these support groups. So, kind of winding up. Thank you, Dr. Camidge, for joining us today for – it’s a new program, actually, from the Patient Empowerment Network, but it’s produced by Patient Power. And again, we want to thank Celgene Corporation, Novartis, and Pfizer for their support, even though they don’t have editorial control. We’re kinda driving the bus. And we’re really grateful that you could join us today and answer all of these pressing questions.

Dr. Ross Camidge:

My pleasure.

Laura Levaas:

Thanks. We’ll catch you next time. And everybody, thanks for watching. Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. 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.

A Yoga Technique to Increase Relaxation and Reduce Anxiety

Certified Yoga Therapist Raquel Jex Forsgren shares a short yoga and breathing technique to help you reduce anxiety and increase relaxation. You can refer back to these practices in stressful situations to help control your mind and breath.

You can check out more of Raquel’s videos on her YouTube channel, Yoga With Raquel.


Transcript:

Raquel Forsgren:

So what I’ll ask all of you to do, even those of you that are on‑‑joining us with Andrew‑‑and Dr. Subbiah, you can do it as well‑‑I’d like all of you to feel really comfortable, just to sit in your chair or if you’re watching this in your bed lying on your back, just wherever you are I want you to just simply close your eyes if you feel comfortable doing that.  And immediately feel the surface of whatever it is that’s supporting you, the chair, the bed, see if you can sink into it, even 5 percent more than you were initially.

Wherever your hands are, feel the bottoms of your hands, maybe the bottoms of your feet, your toes, your heels.  Just feel the body itself.  Now notice your breathing and don’t judge it, just notice what it’s doing, if it’s nice and slow and fluid as you inhale and exhale or shorter little breaths or sticky or clunky in any way.  Don’t analyze it.  Don’t go into any thinking other than just noticing.

Begin to expand your muscles in your ribs as you take your next inhale.  Just think about expanding your ribs out just a little bit more, taking two more nice, slow inhales and exhales.  And I want you to bring to mind one thing you’re really grateful for today.  One thing.  The next before we move on, bring to mind a goal, an intention.  It could be how you want to feel for the rest of the day, emotionally or physically.  How do you want to feel or what do you need?  Beautiful.

Softly begin to open your eyes and bring your hands right in front of your heart with your palms placed together.  We’re going to do just a few movements of our arms so that you can see what it’s like to connect movement, your body and mind and breath together, and also thinking about lung cancer just something that helps expand the lungs and just activate all of those muscles themselves that need to be nourished.

So as you inhale just open your arms like an (? cast) or goal post.  And you’ll need to adjust this.  If you have had surgery along the central plate, take it nice and easy, just open, inhaling.  As you exhale bring your arms together, touching your palms together, elbows and forearms.  Inhale, open the arms again.  Exhale, closing the arms together.  Just take two more only moving with your own breath.  And closing.  One more time just like that, beautifully opening and relaxing.  And releasing the palms back down on your hands.

Close your eyes one more time.  I want you to notice if anything has changed within your body, your mind or your emotions, and there’s nothing wrong if nothing’s shifted.  I just want you to notice.  And softly blink open your eyes again because I want to show you and have you go through with me one of the best anxiety reducing breathing techniques that can be done.  It’s published in the literature.

It’s called alternate nostril breathing.  You can do this while you’re waiting at the doctor’s office for results, if you starting to feel panicky or anxious, when you’re inside an MRI machine or a CT scan, when you are just waking up in the middle of the night with racing thoughts and you can’t seem to shut them off.  So you’ll take two fingers, sometimes it’s the outer fingers but sometimes with arthritis in older hands it’s a little tougher, so I like to use two fingers, you’re going to bring them up to your nose, and you’ll be closing off one nostril at a time.  And I want you to breathe normally and naturally, okay.  So this isn’t anything forced.

Close off the right nostril first, and just delicately push it.  You don’t have to push it clear into your nose.  Just delicately push it.  Exhale all the way out the left side of the nostril.  Then inhale through the left nostril, exhale out the right nostril.  Inhale through the right nostril, exhale out the right nostril.  We’re going to do three more of these.  Inhale through the left, exhale out the right.  Inhale through the right and exhale a little longer out the left.  One last time.  Inhale through the left and exhale longer out the right side.

Bring your hands back down to your lap and close your eyes again.  Take a nice normal, natural breath.  And I want you to notice what’s different in your breathing, if anything.  Just notice it.  Notice your heart beating.  Come back to that intention or that goal you set for yourself.  And softly blink open your eyes with a smile.  I’m expecting all of you watching to be smiling even though I can’t see you.  And Namaste.

Living Well with Lung Cancer: Mind-Body Medicine

Mind-Body Medicine: How Can Cancer Patients Utilize Supportive Care Therapy Tools?

Recent studies support mind-body interventions, like yoga and mindfulness, as being responsible for helping to stabilize and manage symptoms and side effects of treatment. Preliminary studies show that mind-body medicine has the ability to lessen fatigue, anxiety, respiratory toxicities, sleep disturbance and emotional distress for not only patients, but care partners. Watch along as Certified Yoga Therapist Raquel Jex Forsgren and Dr. Ishwaria M. Subbiah explore mindfulness.

To see all our Lung Cancer programs, please visit our Lung Cancer page.

Downloadable Program Guide


Transcript:

Andrew Schorr:

And hello.  I’m Andrew Schorr with Patient Power.  And (? Inaudible).  We’re going to help you be more in control of your cancer journey, you as a patient or you as a care partner.  And I want to thank our sponsors for the program, Celgene Corporation, Genentech, Helsinn and Novartis for their financial support.

Now, you can send in questions if you haven’t already.  Send them to questions at patientpower.info, questions@patientpower.info, and we’ll take your questions later on with our experts.  Okay.

What are we discussing today?  Well, think about it.  If you have lung cancer or, like me, chronic lymphocytic leukemia‑‑I have another cancer too, 22 years I’ve been dealing with this, some of it‑‑myelofibrosis, a myeloproliferative condition, if you have multiple myeloma or pancreatic cancer, whatever it may be, you may get hit with heavy duty treatment, and that has side effects.  How do you cope with that?  And then you have all the issues that go with your diet, if you feel like eating, your mental health, your physical health.  Are you moving?  What are you doing?  The same for your care partner as well because they’re there along the way.

We’re going to be discussing all that, and we have some leading experts and I want to introduce them.  First of all, I want to start with my wife, Esther Schorr, who has been on this journey with me for 22 years.  Esther, welcome to the program and being my partner in life and on this.  Hi, Esther

Esther Schorr:

Oh, I can’t say that it’s been easy being your partner all these years, but it’s my pleasure to be here, and it’s been a pleasure to go along on this‑‑not a pleasure, but I’m happy to go along on this journey (? Inaudible).

Andrew Schorr:

Right.  In a minute we’re going to talk about some of our coping strategies, but I want to introduce you to our two other experts on this.  First of all, let’s go to Houston, Texas, to the MD Anderson Cancer Center where we’re joined again, because she’s been with us before, Dr. Ishwaria Subbiah, who is assistant professor of palliative, rehabilitation and integrative medicine.  Dr. Subbiah, welcome back.

Dr. Subbiah:

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

Andrew Schorr:

Okay.  We’ve got a lot to talk about.  And now let’s go up to Chicago where we’re joined by an expert in yoga, a certified yoga therapist, and that’s Raquel Forsgren who is an expert in yoga as it applies to cancer.  Raquel, welcome to the program.

Raquel Forsgren:

Thanks, Esther.  Thanks Andrew.

Andrew Schorr:

Okay.  Let’s go back to Esther for a minute, and we’re going to catch up with you two in just a minute.  So, Esther, a little about our story, when I was diagnosed with leukemia, when we were diagnosed, if you will, 22 years ago with chronic lymphocytic leukemia I didn’t say this to you, but I thought I’d be dead in short order.

Esther Schorr:

Well, I didn’t say it to you, but I was concerned the same way, Andrew.  It was very, very frightening.

Andrew Schorr:

So the diagnosis sends any of us reeling, and the care partner as well.  So let’s talk about that.  Esther, you had me getting distilled water for the house.

Esther Schorr:

Distilled water for the house‑‑

Andrew Schorr:

Wondering if we should move away.

Esther Schorr:

Yeah.  We wanted to move away from power lines and went to an energy therapist.  I think you even had hot stone therapy.  I can’t remember all of the things.  We were juicing at the time Andrew Weill had his‑‑

Andrew Schorr:

He had me stop drinking coffee because you saw a program with Dr. Weill from University of Arizona, an integrated medicine expert, and he said, well, maybe you shouldn’t drink coffee.  We lived in Seattle where there’s a Starbucks on every corner‑‑

Esther Schorr:

It was really hard.

Andrew Schorr:

And expanding, so.

Esther Schorr:

Yeah, but there were other things, Andrew, really more relevant.  I mean, those are the things that I think you and I thought, well, maybe we can get some control over what’s going on.  But really at the root of some of this is the things that really helped us, at least I can talk for myself.  I know you and I went into counseling to try to figure out how to cope together, and for me knowing that I had to be your care partner‑‑and we also had two small children at the time‑‑I’m a very anxious person by nature, and I found, and it may not be right for everybody, but I found that medication really helped me.

And that started about the time that‑‑it started at the time when you were diagnosed and to this day it’s really been helpful to me and I can’t wait to talk to Raquel because I now do yoga, and we’ll talk about that.  Yoga has helped me tremendously along the way.

Andrew Schorr:

And we did continue to exercise.  Esther and I have been joggers, if you will, and so we did that, and we continued that as I got chemo and other treatments.  Maybe we couldn’t run as far or I didn’t run as far or as fast, but we’re big believers in exercise to this day.  And it’s helped.  And the one other thing I would say is the religious component, we’re Jewish, so we would consult with our clergy and trying to get my head on straight related to our faith.  And if life would be shorter, how did we live our life, what would we say to our children or whoever would follow about what our life was.  So religious, psychological, exercise, medication support, right, Esther, related to anxiety.

Esther Schorr:

And leaning on community.  You know, I know for some people it’s hard to ask for help, but if you can find it in yourself to let go a little bit of your ego and pride.  I know for me and I think for you too, Andrew, just reaching out to our closest friends and family and saying, hey, we need some extra support.  Give us what you can, was really, really helpful.

Andrew Schorr:

Right.  All right.  Dr. Subbiah, let’s have some terms that we understand as we begin.  So, first of all, your palliative care, you’ve explained this to us in other programs, it’s not about necessarily you’re near death.  It’s about helping support you on your cancer journey.  Supportive care, what does that mean?  Mind‑body medicine, what does that mean?  So maybe you can define some of this for us today so we all have a common lexicon, if you will.

Dr. Subbiah:

Absolutely.  And so when you hear the terms “palliative care” most people, the first thing they think of is hospice care.  So something that, a service that’s engaged towards the end of life.  But the reality is that palliative care is symptom management.  It’s been taking care of that whole person and the people around them who matter to them as they go through the treatment for cancer.

So palliative care, we’re involved more and more, really from the time of diagnosis because most people feel the burden of this diagnosis, sometimes even before because you know that something is wrong leading up to the diagnosis for many people.  And so a bulk of my practice is taking care of a person as they go through cancer treatment.  So we refer to that as supportive care.  We’re supporting you through (? Inaudible).

So things that may come up, cancer pain, nausea, trouble breathing, depression, anxiety, distress, spiritual distress, spiritual pain.  So there are many elements that go with this diagnosis of cancer.  So our multidisciplinary team helps with managing that in the supportive care realm.

Palliative‑‑supportive care falls under palliative care, and so there is a component that is closer towards the end of life where the‑‑your body is going through the changes that are very natural.  And we want to make sure that the suffering that you’re afraid of or somebody who cares about you is afraid of, we can minimize that to a great extent.  The pain of that moment of life may not change, but the suffering that we associate with our passing from any reason doesn’t have to be there with the engagement of a palliative care physician.

Andrew Schorr:

Okay.  I want to get to mind‑body connection.  So this has been a debate in the medical profession for years, both for you and maybe your care partner.  So do we have like some control with the way we live our life or think about things that affect cancer?

Dr. Subbiah:

So mind‑body, there are many schools of thought on what it is, but if you put all the academic aside the meaning comes down to exactly what’s words are.  Your mind is very closely related to your body, and your body function is very closely related to your mind.

So what it means for us in the realm of cancer care either as a provider or as a patient is there is a component of everything that you’re feeling that can potentially be modified by mindful practices.  It may not change it altogether, it may not make it go away altogether, but there’s a component of symptom management that is beyond medications, that’s beyond a pill that involves practices that are what fall under the realm of mind‑body practice.  And so some of these are ones you’re heard of, acupuncture, massage therapy, guided imagery, music therapy and certainly yoga as well.

Andrew Schorr:

Yeah, and generally exercise.  Okay.  So you mentioned yoga.  So, first of all, there has been a study to show I think preliminarily that yoga, and I’m not sure if it was done at MD Anderson or where it was done, where there was a benefit they said for yoga, for yoga participation, both for the patient and especially the care partner, right?

Dr. Subbiah:

Absolutely.  And so that study was done at MD Anderson, and it was spearheaded by our department.  So what we wanted to show is that for a person who is going through chemotherapy and radiation for their lung cancer, that would a structured yoga intervention help them as well as their caregivers.  So what you’re looking at is an intersection where we not only acknowledge the distress of the person with the cancer and going through treatment but also of the person who is going with them on that journey.

And so this yoga intervention was structured to be given to both‑‑to be practiced by both the patient as well as their caregiver.  And so it was done for a 12‑week period with follow‑ups subsequently.  And we were able to show that there was a statistically significant and clinically meaningful difference improvement in the level of fatigue, in the level of activity in that person, which we measured by a six‑minute walk test.

So if the person was able to do a bit more physically as a consequence of participating in this program when compared to the control arm, which did not receive this structured yoga intervention.  And so there are implications on your functional standards, your mood, your energy level of adopting mind‑body practices.

Andrew Schorr:

And this was done for the caregivers as well, wasn’t it?

Dr. Subbiah:

Absolutely.  And so the caregivers also reported an improvement in their overall mood as a consequence of this.

Esther Schorr:

(? Inaudible) I’d just like to interject as a caregiver, a care partner, and I know that Raquel probably will mention this, but I know that there’s a whole range of things that fall into the category of yoga and mindfulness, and again people talk about that, but I know for sure that I have experienced the mind‑body connection in controlling anxiety.  The anxiety thoughts about what‑if in the future for you, what if for user family, that in the mindfulness and the breathing and the things that come with yoga, not just the positions that you do, and I know we’ll talk about that, but it’s more about centering your thinking more positively and turning inward and visualizing good instead of bad scenarios was tremendously helpful.  So (? Inaudible).

Andrew Schorr:

Okay.  All right.  So, Raquel, I’ve got some questions for you.  So you have a background related to yoga and cancer and sort of yoga tied in with cancer.  Tell us what that means and how you got involved in that because normally you wouldn’t think of that.

Raquel Forsgren:

Yeah, how it came to be.  Well, I started researching breast cancer on the bench about 28 years ago and into the pharmaceutical side, on the drug development with side as a pharmacologist, and obviously it worked with a multitude of different types of cancer, and it’s been my passion my whole entire adult life.  And I’ve also had several family members that have gone through the battle, some have won, some have lost, and so it’s very personal for me.

And then on the flip side with yoga therapy, just as Dr. Subbiah was talking, I like to see the entire person, the whole person be addressed.  And we need the oncologist to focus on the treatment and doing all they can to really fight at the disease level, but I think, as all three of you a have just mentioned, a yoga therapist comes in on the other side with what else can you do to help empower the person to actually take control over what they can.  Because there’s so much of a loss of control.  So I’m inspired by that.

And then I work with a lot of the other tools that we’ll talk about in a minute to just help that person control their mind, their breath, their thoughts, their rituals, all positive things that Esther was just talking about.  So that’s sort of my background and my interest in how it became to be working with cancer patients.

Andrew Schorr:

Okay.  So Esther is into yoga.  Esther, you started doing that what about four or five months ago, and now you do it two, three times a week.

Esther Schorr:

Right.  And actually I’m kind of sad I didn’t do it sooner.  But I will say I came into it because I was transitioning to much more let’s say aggressive exercise, running, some weight lifting.  But I found that the combination of yoga‑‑you know, a combination of yoga and the mindfulness and (? Inaudible) somewhat medication is really not hard on my body and really good for attitude.  So, yeah, I mean, I’m a big advocate.

Andrew Schorr:

Okay.  So, Raquel, so yoga might be foreign to people.  I mean, I knew‑‑I learned how to run and jog, but if you had asked me until Esther has been exposed to yoga I’d say that’s foreign.  So maybe you could ease us into it.  Maybe there’s some simple things you could show Esther or you two could demonstrate together that would be helpful for maybe the bulk of us who have never gone near any of this stuff but we do want to feel more in control.

Raquel Forsgren:

Yeah, I definitely will.  First of all, I will say that’s a myth.  There’s a lot of myths around yoga with not being able to do it because it’s too rigorous.  You mentioned Esther kind of coming from a rigorous running, jogging.  A lot of people think of yoga and they think of the postures that they see on social media or in magazines or TV or whatever, and they’re upside down where they’re doing different things, and that’s a beautiful aspect of yoga, but it’s only one.

There are so many different things we can do with yoga, the postures, the breathing, the imagery, as Dr. Subbiah talked about, and deep relaxation, which multiple studies have shown that can actually reset and rebalance someone’s nervous system.  So talk about mind‑body and being able to control that yourself.

So if you’d like to go you through a few techniques now we can do that.  What I would do is invite all of you who are viewing the program to do it with us and see if you can sense the difference in just a few minutes of doing some of these very simple practices, and then what you can do after this is recorded come back to this video and watch the practice again and just implement these, like Andrew said, a little bit on your own.

So what I’ll ask all of you to do, even those of you that are on‑‑joining us with Andrew‑‑and Dr. Subbiah, you can do it as well‑‑I’d like all of you to feel really comfortable, just to sit in your chair or if you’re watching this in your bed lying on your back, just wherever you are I want you to just simply close your eyes if you feel comfortable doing that.  And immediately feel the surface of whatever it is that’s supporting you, the chair, the bed, see if you can sink into it, even 5 percent more than you were initially.

Wherever your hands are, feel the bottoms of your hands, maybe the bottoms of your feet, your toes, your heels.  Just feel the body itself.  Now notice your breathing and don’t judge it, just notice what it’s doing, if it’s nice and slow and fluid as you inhale and exhale or shorter little breaths or sticky or clunky in any way.  Don’t analyze it.  Don’t go into any thinking other than just noticing.

Begin to expand your muscles in your ribs as you take your next inhale.  Just think about expanding your ribs out just a little bit more, taking two more nice, slow inhales and exhales.  And I want you to bring to mind one thing you’re really grateful for today.  One thing.  The next before we move on, bring to mind a goal, an intention.  It could be how you want to feel for the rest of the day, emotionally or physically.  How do you want to feel or what do you need?  Beautiful.

Softly begin to open your eyes and bring your hands right in front of your heart with your palms placed together.  We’re going to do just a few movements of our arms so that you can see what it’s like to connect movement, your body and mind and breath together, and also thinking about lung cancer just something that helps expand the lungs and just activate all of those muscles themselves that need to be nourished.

So as you inhale just open your arms like an (? cast) or goal post.  And you’ll need to adjust this.  If you have had surgery along the central plate, take it nice and easy, just open, inhaling.  As you exhale bring your arms together, touching your palms together, elbows and forearms.  Inhale, open the arms again.  Exhale, closing the arms together.  Just take two more only moving with your own breath.  And closing.  One more time just like that, beautifully opening and relaxing.  And releasing the palms back down on your hands.

Close your eyes one more time.  I want you to notice if anything has changed within your body, your mind or your emotions, and there’s nothing wrong if nothing’s shifted.  I just want you to notice.  And softly blink open your eyes again because I want to show you and have you go through with me one of the best anxiety reducing breathing techniques that can be done.  It’s published in the literature.

It’s called alternate nostril breathing.  You can do this while you’re waiting at the doctor’s office for results, if you starting to feel panicky or anxious, when you’re inside an MRI machine or a CT scan, when you are just waking up in the middle of the night with racing thoughts and you can’t seem to shut them off.  So you’ll take two fingers, sometimes it’s the outer fingers but sometimes with arthritis in older hands it’s a little tougher, so I like to use two fingers, you’re going to bring them up to your nose, and you’ll be closing off one nostril at a time.  And I want you to breathe normally and naturally, okay.  So this isn’t anything forced.

Close off the right nostril first, and just delicately push it.  You don’t have to push it clear into your nose.  Just delicately push it.  Exhale all the way out the left side of the nostril.  Then inhale through the left nostril, exhale out the right nostril.  Inhale through the right nostril, exhale out the right nostril.  We’re going to do three more of these.  Inhale through the left, exhale out the right.  Inhale through the right and exhale a little longer out the left.  One last time.  Inhale through the left and exhale longer out the right side.

Bring your hands back down to your lap and close your eyes again.  Take a nice normal, natural breath.  And I want you to notice what’s different in your breathing, if anything.  Just notice it.  Notice your heart beating.  Come back to that intention or that goal you set for yourself.  And softly blink open your eyes with a smile.  I’m expecting all of you watching to be smiling even though I can’t see you.  And Namaste.

That’s in a nutshell what I would say.  So that was about five minutes.  You tell me what you noticed.  How did you feel after doing it?

Andrew Schorr:

Well, as a patient I’m more relaxed.  I think I need a nap.  I’m worried about‑‑Dr. Subbiah has probably got (? Inaudible).

Dr. Subbiah:

Oh, I’m in a good place, so thank you.

Esther Schorr:

I can tell you that it steadied my breathing.  It’s deeper.  And my heart rate just calmed.  It just calmed.  I mean, it wasn’t super agitated before, but as we went through that exercise it’s just, I’m like even.  I’m like even.  That’s the only way I can explain it.

Raquel Forsgren:

Yes, that’s the most common description.  Thank you.

Andrew Schorr:

So, Raquel, a few questions.  Okay.  So let’s say we have 100 people here who are more relaxed, and they say, well, okay, I get it.  How can I be trained to do this again, either alone with others?  How does that happen?  So wherever people are, and they could be all over the world watching, how do they seek out resources to do this?

Raquel Forsgren:

Oh, it’s such a great question.  I would say across the country, particularly in cancer centers now, especially like MD Anderson and even the clinics.  It doesn’t have to be within the context of a big academic institutions, just ask.  Ask the nurse.  Ask your social worker.  I’m working with a lot of social workers now within the context of support (? Inaudible) support groups, so we’re mixing talk therapy with mind‑body.  So just ask your nurse navigator or any of them.  So that’s number one.

Number two, it is important to look for someone that is certified as a yoga therapist because we’re trained as a subspecialty in trauma, in serious disease, in cancer.  So that helps.  And you can go to the International Association of Yoga Therapy.  Go to their website and type in your zip code, and any number of certified therapists will come up with that information.  So those are two simple ways to find it.

Andrew Schorr:

Okay.  Dr. Subbiah, okay.  So‑‑and you all picked yoga as the modality you were testing as well.  So, first of all, what’s your take on what we just did, and what would you say to our folks as far as making use of that along with other approaches?

Dr. Subbiah:

So I went along with all of you and did this myself, and so everything regarding the heart rate, breathing, I’ve experienced it, and I noticed that my shoulders are much less tense.  So that’s always something that I notice when I do this in my office.

So yoga can be intimidating in that some people think that you need to set aside 40 minutes, an hour to do this.  The reality is you can gain benefits really in a very short period of time, and that’s one of the elements that we’re testing.  Is initially if an intervention, a yoga‑based intervention is a 45‑minute session, do we still have the same effect when we do a 30‑minute session, a 20‑minute session?  And we’re working on one now that’s an 11‑minute session.  So we want to see if the beneficial effects in people going through cancer treatment and their caregivers can be experienced by shorter and shorter time sessions.  And so we’ll put that data out once we get it.

Now, the two ways, the easiest ways to access it, are like what was said, which is engage your healthcare team and ask them about resources with integrated medicine within their practice, within their nearby hospital, within the city.  And so at MD Anderson we have a separate department of integrated medicine that’s devoted to the alternative and complementary aspects of care of someone with cancer.

And so the integrative center has classes every day in tai chi, Qigong, multiple‑‑every day that’s open to anybody, and so the patients, caregivers, whomever comes with them.  And so we would encourage our patients to take advantage of that, especially if you have an appointment in the morning and maybe an infusion in the afternoon and there’s some time in between the day is to go and spend that time in the integrative medicine center.

The other resource that I use is the integrative medicine center’s web page within MD Anderson.  And so you can access it from anywhere in the world.  Just Google integrative medicine at MD Anderson.  It will come up.  And there we have several videos there with our yoga expert here.  Dr. Alejandro Chaoul is one of the world leaders in yoga in the context of cancer therapy.  And so (? Ali) has several videos where he guides you through this.  So I’ve done this at home.  I’ve done this in the office.

And so you can open it up, do it on your smartphone and try it out.  And you can go back to it as many times as you want.  And don’t forgot to go back to it.  It’s not a one‑time.  The benefit comes from doing it repeatedly over the course of‑‑really it’s a lifestyle modification, so.

Andrew Schorr:

Esther, so you’ve made this part of your life now.  So I did feel a benefit just doing this.  And I did go to one class with you, so I’ve got to go again.  But as a caregiver, what do you see?  What change have you seen?

Esther Schorr:

Well, you know, other than what Raquel pointed out in that demonstration, for me, I’ve seen myself become physically stronger now, and I’m well aware that (? Inaudible) cancer patients some of the more advanced parts of yoga, the physicality of it may or may not be appropriate given what your mobility is and your physical being.

But if it is, whether it’s a caregiver or a patient, the really good thing about yoga that I found is it’s not a competitive sport.  It is a practice, and it’s very individual.  So you can do as much or as little as you want.  The mindfulness part, the breathing, what we just did, everybody can do.  And then you can build on that if for example you’ve gone through treatment and there are parts of your body that you have strength or you want to build strength yoga is very‑‑it builds on itself, so you can just build it at your own speed.

And so, for me, I found it’s not tough on my body like running was.  It accomplishes to lower anxiety, etc., and at the same time what I found is it strengthened my physical body and my ability to tolerate other stressors.

Andrew Schorr:

Right.  And as a patient I have definitely seen a change in Esther, which has helped me be calmer as well.

Esther Schorr:

Oh, I’m glad there’s that by product.  That’s great.

Andrew Schorr:

So Raquel, are there video you’re‑‑so great.  Are there videos that you’re in as well that we can link to that would be helpful?  I’d love to see again.

Raquel Forsgren:

I do.  Actually, I have a YouTube channel that has just a couple on there that I focused around, a long, deep relaxation, and this is one we didn’t talk about today much.  It’s about a 25‑ to 30‑minute deep relaxation, and it works through progressive muscle relaxation, body sensing, using the breath, and also really gets into the subtleties of the mind and what you’re starting to think about and process emotionally while you’re relaxed.  So that’s number one, and it’s on there.  It’s Yoga With Raquel.  That’s the name of it.

The other two that I have put on there were related to anger, grief, and dealing with difficult emotions and how do you welcome those and deal with them and process them.  And some of those I put on because of some people I was working with, was working with at the time, who were just diagnosed, and they had that swarm of emotions and they didn’t know what to think about what the oncologist had even told them.  They were angry.  They were sad.  It was just a mix.

So I created those just off of training I’ve had with Richard Miller and others to build those and put those out there for people.  And they’re free resources that anybody can tap into.  And they’re six and seven minutes long, but I would highly encourage anybody, especially I think for care partners, Esther like you and I have talked, you know, you’re wanting to be strong and be there for the person, for the loved one.  You don’t want them to see you falling apart inside or being afraid, and I think you need an outlet to feel what you’re feeling and then be able to go back and be present for the loved one.  And so that’s also been behind, in my mind, in creating a lot of these things now for that.  But, yeah, check those out for sure.

Esther Schorr:

Well, and yoga can be done together, too.

Raquel Forsgren:

Absolutely.  Absolutely.

Andrew Schorr:

So, Dr. Subbiah and Raquel and Esther and me, we’re getting questions, and if you have a question the best way to do it is to send it to questions@patientpower.info, and Tamara Lobban‑Jones, our wonderful producer, will help forward those to us.

Dr. Subbiah, I just saw a quick question that came in from Canada where someone asked, well, can yoga help with peripheral neuropathy pain?  So, for instance, our myeloma folks, some others, have medicines, and I think of those but there may be others across cancer, where you developed neuropathy in full or numbness, so what about that?  Or are there other ways to manage it, and that’s part of your discussion with your palliative care specialist?

Dr. Subbiah:

Absolutely.  Now, that’s a great question, and peripheral neuropathy, it can be anything from a nuisance to debilitating, and so it’s‑‑and it’s experienced by so many as a side effect of so many different cancer medications and so many of the other medical problems, like diabetes.  And so the impact on lifestyle can be tremendous.

And so we look at the pharmacological interventions that are out there that you may have worked with with your doctor, whether it’s the gabapentin or pregabalin or duloxetine.  These words may all ring a bell to some of you who are suffering from peripheral neuropathy.

The mind‑body realm just has some options for peripheral neuropathy, and these work in the same way that most mind‑body techniques work, which is in conjunction with (? Inaudible).  And so one of the interventions that we have data for to support its use in peripheral neuropathy, the primary one that comes to mind is acupuncture.

And so acupuncture, we have small trials that shows an improvement in the pain when compared to those who don’t receive acupuncture in their peripheral neuropathy.  So it does have a role when you use it for the management, and it may be that you use it in addition to a medication that you may have been taking that may have helped but not to the extent that you want it to.  So acupuncture has a tremendous role in the management of peripheral neuropathy.

The remainder of the techniques have a role in anxiety management, and even the distress that goes with having a peripheral neuropathy, so it’s not to say that there isn’t a role.  The whole concept of this is you have to take care of the whole person, so it’s not just about the pain in your left foot.  It’s the left foot that’s attached to that person who’s having to stop running because their left foot is bothering them.

So mind‑body techniques have a very important role, especially as you go later on in your treatment or as a survivor.  Some of these side effects stick around with you for a very long time.  So these mind‑body practices, you can take them with you for life.

Andrew Schorr:

We talked about anxiety, and Esther referred to that as a caregiver.  Previously and at other times we always talked about medication for that or depression as well.  What about some other things that come up?  I know when I went through chemo Esther had me taking ginger.  And I even had one of these little zappers like some pregnant women use for nausea, and that happened me, right?  But there were things like that.  And then I think I was an MD Anderson patient at the time, they even did have some other medicines, even suppositories I used because I couldn’t take anything by mouth.  I couldn’t keep it down.  And that helped me a lot.

So but that was in communication with my healthcare team.  So nausea, sleeplessness, anxiety, and even diet generally.  I know some people particularly with lung cancer have I think you’d call it cachexia or even myelofibrosis, which I have, where people just are like wasting away, right?  They’re not eating at all.

Dr. Subbiah:

Absolutely.  So this concept of cancer cachexia is very complex.  So from a medical standpoint it’s the loss of good muscle in your body and fat, and the reasons are not clear because you’re eating but you’re going through active treatment for cancer.  And what we attribute it to is the cancer itself, the chemicals, the cytokines that the cancer releases, the changes that it has on the body causing it to break down good muscle.

And so that has tremendous implications on body image.  If you don’t look the way you used to and you feel your appearance, your identity changing on a weekly basis, that can have a tremendous impact on your whole person well‑being.  And so at the moment there are really no effective treatments to stop cancer cachexia or even reverse it.  There are ways to potentially slow it down, and that may well mean meeting with the dietician to optimize the food that you take to make sure that you are getting enough calories, the right kind of calories.

Working with physical therapy on strength building, not necessarily to run a marathon but to have enough strength to go about your daily activities around the home, be able to walk and do things here.  These are ways to try to combat the physical changes that you feel.  So we brought up the anxiety as well.  So it’s‑‑mind‑body practices have a very important role in anxiety management.  And in fact I would say that the most robust data for mind‑body interventions, be it yoga, or massage therapy, meditation, guided imagery, is the management of mood and anxiety.

Andrew Schorr:

Right.  You talked about body image.  It’s all tied together in how you feel, how worried you are about the future, etc., so anything like Raquel was demonstrating to us is so important.

Here’s a question we got in from Pam.  I’m willing to bet she may be dealing with multiple myeloma, I’m not sure, but she says, what effect, if any, does high calcium levels have on the ability to exercise?  So anything‑‑I don’t know whether Raquel, you would comment or Dr. Subbiah, let’s start with you.  Calcium, you know, you have all these bone lesions and stuff like that, you can have this calcium problem but yet you want to do this stuff.  Any thought there, Dr. Subbiah?

Dr. Subbiah:

Sure.  And so hypercalcemia, it’s a very real medical entity, so you have to work very closely with your oncologist, with your physician, the provider team to make sure that the calcium is kept at a reasonably safe level.  What your body experiences as a result of hypercalcemia is real.  There is changes in energy pattern, changes in the strength, changes in your bowel function, changes in your mind and mood.  So hypercalcemia has real implications on really the whole body experience.

So it’s one of the electrolytes imbalances.  You know, you have‑‑I’m sure people listening to this have their potassium checked, their magnesium checked, the phosphorus checked among all other things at some point time during this journey.  Hypercalcemia is one where the person feels it a lot more than maybe another electrolyte that may be low or high.  So it’s very important to work with the provider team to get it down to a reasonable level, and know that some of what you’re feeling may be not necessarily the cancer per se or the treatment for the cancer.  It may be because of the electrolyte imbalances.

Andrew Schorr:

Wow.  Okay.  Raquel, go ahead.  You’re muted, so‑‑there you go.

Raquel Forsgren:

Yeah.  I think the one thing that I also would add to that too, Dr. Subbiah’s point about it affecting‑‑hypercalcemia affecting the whole body, the deep relaxation that I spoke about earlier, the way that that works specifically is around turning off that fight or flight mechanism in that part of our nervous system that kicks in when our body is in a state of trauma, which is kind of what’s happening in hypercalcemia from a just simplistic perspective.

And so when you’re in that deep relaxation state and leveraging the breathing, you’re reducing cortisol levels that are pumped out from your adrenal glands, and that entire cascade that happens in your body just starts to slow and relax.  And the neurotransmitters, the chemicals in the brain that are released, it’s just a cyclic event.

And so even though one might not be able to do any particular movements even, the breathing, the imagery and those deep relaxations shouldn’t be underestimated for the role they play in boosting the overall health of the inside off the body and all of the other mental components with it.  So I just wanted to add that little spin on what those do even if you feel like you can’t move out of your bed.

Andrew Schorr:

Well, thank you.  Here’s a question we got from Susan.  Susan wants to know, how can I protect myself from the effects of chemo outside of massage and meditation?  So chemo and even some of the non so‑called chemo drugs are very powerful and they have effects.  So, Dr. Subbiah, what about protecting yourself?  What can you do?

Dr. Subbiah:

So it’s‑‑there are added effects that one experiences.  That’s very different from therapy to therapy.  And so the interventions are, what you would do is dependent on the side effects of what you are taking at the moment.  So it starts with that discussion with your provider team.  What are the most common side effects, and what are some of the more rare side effects?  So it gives you a sense of what you’re most likely to experience and also to be on alert in case you happen to be that person who has a rare side effect as a consequence of the therapy.

Now, there are side effects from chemotherapy and targeted therapy and immunotherapy and cell therapy (? if anyone is on CAR‑T).  There’s only so much that can be done to protect yourself from this.  So the preventative aspects of the side effects is not there yet.  That is something that we work towards.  That’s something we hope to have so that the person doesn’t have the side effect to begin with.

So at the moment the way symptom management is is we have to‑‑we address the side effect after it happens.  And so the approach‑‑some of the most common side effects that are fatigue, nausea.  (? Inaudible) there are medications there.  You can talk to your medical provider about if there’s a role for a small, lower dose of steroids to help with fatigue.  If there’s a role for a lower dose of methylphenidate to help with fatigue, which is a stimulant.  So there are some data to support these in smaller trials.

There’s‑‑as with many medication interventions for fatigue management, the data is always mixed, and so there are some trials that think it’s important, others that don’t, and so at the end of the day my approach to it is if somebody’s having severe fatigue and they’re on a treatment that’s helping their cancer, treating their cancer, keeping it under control‑‑and we have a lot to gain from having the cancer under control‑‑let’s try a medication or two for the fatigue and see if it helps.  If it doesn’t help you, then stop it and move on.

But there’s so much variation from person to person, how you respond to a medication that’s there for supportive care and the side effects of the original cancer treatment.

Andrew Schorr:

Okay.  Raquel, here’s a question we got in from India.  I’m going to read that in a minute.  I just want to mention, if you have a question‑‑we have a few more minutes‑‑send them to questions@patientpower.info.  So this one is from India, and they didn’t give their name, but they said, how helpful is yoga for interstitial cystitis and with pelvic discomfort for a cancer patient?

So here’s somebody with that problem or I don’t know what the gynecologic cancer is, well, can yoga help at all just for the pain?

Raquel Forsgren:

Interstitial cystitis is a complex condition.

Andrew Schorr:

Amen.  It is.

Raquel Forsgren:

Even aside from the cancer component.  I see Dr. Subbiah smiling and nodding.  It would be kind of similar to the other mind‑body practices we talked about.  So the number one thing is relaxing the body.  It’s just relaxing the muscles.  Your pelvic floor and everything around it will tighten just as much as your shoulders or the other parts of your muscles, and the more you can relax them the better.

The more you can defocus away from that pain with guided imagery, that has also been known to help.  I don’t know specifically for interstitial cystitis, but I’m just talking about other types of internal pain, bone metastases, things that very‑‑you some things that are not on the outside of the body.  So I would say deep relaxation for sure.

Dr. Subbiah, for you, do you believe that pelvic floor postures could benefit someone in that way, or do you think that it could potentially aggravate the pain?  That could be kind of a follow‑on question because making posture is in really pulling the bellybutton in towards the spine and engaging that pelvic floor.  What do you think?

Dr. Subbiah:

So that’s along the lines of what I was thinking because you’re asking‑‑the person who asked the question is asking about a very specific condition, and so to my knowledge I’m not aware of any particular trials for mind‑body interventions for the purpose of interstitial cystitis.  And so then you start to think about, okay, what are‑‑what do we have data for where the symptoms may be similar and in a similar part of the body?  And so you immediately think of the gynecologic cancers where a person may have had surgery or radiation in that area of the body and causing over time that inflammation turns into a fibrosis.

And so I’m thinking of a woman who may have had a gynecologic cancer and having discomfort and pain, frankly, in that area and a pain that’s probably not going to go away because it’s a sequela, a consequence of the treatment.  And so in those contexts there is some support for mind‑body interventions.

The pelvic floor exercises are one that we do suggest, and so would it help with particularly interstitial cystitis?  I’m not quite sure simply because I can’t think of any data or a study where a person has asked that question.  And so my recommendation, as with all of these interventions, is to, number one, speak with the physician or provider who knows you the best, and have this discussion on, number one, do you think there is data, number two, do you think it will help, and number three, do you think it’s okay if I try it.

And then you take that information, you absorb it, as with all (? Inaudible), and then you make an informed judgment for yourself.  Okay, do I want to try this mind‑body practice?  I know that there isn’t a big randomized trial to show its benefit, but my doctor said it may not necessarily hurt me to try it, and so should I go ahead and make that attempt to see if this mind‑body practice will help me in any symptom that you could be feeling.

Andrew Schorr:

I want to ask about trying.  So we have women probably watching and some of them have had maybe lymph node surgery and maybe even dealing with lymphedema and may even wear (? sleeve) and things like that for breast cancer.  We have people who’ve had debilitating treatment for lung cancer.  We have people going through or have gone through transplant of various kinds, things like that.  So you see it, Dr. Subbiah, Raquel probably as well.

So you say, well, okay.  Do I‑‑how do I assess what I can do?  I can’t, you know I can’t‑‑maybe I can’t go to a class and Esther goes to classes and there are like 20 people in there and they do these different positions, and that’s a little a daunting to me, right?  So how do I celebrate what I can do and maybe increase that over time but at least I start.  So, Raquel, let’s start with you.  The whole idea of starting or trying even if it’s just like that, you know?

Raquel Forsgren:

Yeah, and I think that is one of the biggest things that stops people from trying, from thinking there’s something else they could do to help take control of what they’re going through.  It’s the daunting task of do I go to the yoga studio on the corner that I see people going in in these outfits and doing different things.  Like, I’m not that person.  And that’s the most important take‑home message I know I could give as I educate oncologists and nurses and people that are diagnosed with cancer to do is to do the research, do what Dr. Subbiah talked about, speak to the nurse, talk to the nurse navigator.

Look for classes within a hospital, number one.  Because they will be modified and tailored to people that are going through what you are.  And I know from a yoga therapist’s perspective I tailor yoga therapy sessions based upon the type of cancer, the stage of disease, even the types of treatment that the person’s going through.  I will tailor the entire practice around that with modifications.  And it changes.  It changes from at diagnosis maybe at second round of chemo to tenth round of chemo to post chemo, it all changes.

And so I would just be open, step through the fear, use this as a way to take control where you have the control.  You can’t control what the cancer’s doing, you can’t control the treatments the oncologist is giving you, but you can control your own lifestyle changes and your own quality of life.  And that’s what I love about yoga therapy is because it really does empower you because, as you all saw from just the small five minutes, you felt something.  You felt something shift, and that’s what will happen even if you do it for six minutes or 12 minutes.

And you do not have to be in a class at a studio.  You can do it within the context of even your own home.  And after you do some research you’ll find there’s a lot of online options.  You’re more than welcome to send questions in to Patient Power, and they can forward them to me.  I’m happy to try to help you find somebody in your local community that could even help you from a yoga perspective.  And I so I’m more than happy to help you as much as I can as well.

Andrew Schorr:

Wow.  You’re so devoted.  Thank you.

So, Dr. Subbiah, part of this is communication.  I think Raquel really explained about putting it in context and resources for people to start.  But there you are in your white coat.  All of us have doctors and be maybe we have multidisciplinary teams.  We have nurses and sometimes other kinds of therapists that we can draw on, but we’ve got to speak up, right?  So what would you say about whether it’s the patient themselves or the care partner, like Esther, to advocate so that we get these approaches brought to bear, whether we need training or medication in concert so that we get what we deserve?

Dr. Subbiah:

Sure.  So the field of complementary medicine, integrative medicine, it’s coming more and more to the forefront, but the reality is it’s always been on the periphery for really decades.  And so when you present a‑‑when you bring up an option of a particular mind‑body practice that you may want to try, the person listening to it on the other end, whether it’s your nurse, your nurse navigator, whether it’s your nurse practitioner, your physician or whomever it may be, they may not have been exposed to that in the course of their training and their years of experience.

And a person responds to that in different ways.  Sometimes if they don’t know about it they may dismiss it.  Other times they may be more supportive to say, okay, let’s look into it a little bit more.  But if they don’t have that background experience with it‑‑and that’s the way medicine has been for decades, so it’s not so much a fault of their own.  They just haven’t been exposed to it as much.

Then ask them is it okay if I pursue it a little more, do some more research and bring some information to you to help me interpret it.  And so I think we‑‑when we‑‑when you as the patient and the caregiver are gathering the information, just be aware that the person reading it may already be familiar with it or may not.  And then based on their level of comfort with it go forward in that discussion.

If they have recommendations that’s great.  If they don’t, we mentioned some of the resources where you can search online to find appropriately certified and trained personnel to deliver these mind‑body practices.  And so if you happen to be in a smaller area of the country or even in the larger area but don’t have immediate access to an integrative medicine center to at least get you started, then it’s a great way to‑‑it’s a great opportunity to do some of the leg work yourself and then work with your care team to find what’s right for you.

And you’re right.  The circumstances are that you may end up having‑‑when you end up doing your research you may actually know more than the persons in your (? Inaudible) just because of the way medicine has been but not where medicine is going, which is we’re all becoming much more cognizant.

Andrew Schorr:

Well said.  Esther, I want to get a final comment from you.  When I was diagnosed 22 years ago with chronic lymphocytic leukemia, we were in tears.  I felt like a victim, maybe you did too.  This came out of totally left field.  And I think our whole time with this has been what Raquel and Dr. Subbiah have been saying, trying to take back control.  And we’ve had providers along the way.  Some have been knowledgeable and some have not, but we’ve been trying to be advocates in doing what we can do, right?

Esther Schorr:

Right.  And what rings very true for me and our experience is Andrew shared and I guess I did too in a sense, some of these supplementary things that we researched and tried and it was always is this all right.  Let’s talk about this with his oncologists, his medical team.  And in one instance, I don’t know if you remember, Andrew, in one instance there we had read and done some research about accelerating the amount of a certain vitamin to help you when you were diagnosed with leukemia.

And we had the conversation with your oncologist at the time and he said, what vitamin supplement are you taking.  And when we told him, he said, I think you should probably not do that because in your particular case, in your particular kind of cancer there are studies that say that’s not a good idea.  So I bring that up in that this dialogue has always been really important for us, and I would think that that’s really what you both have been saying is research it, but before you dig in whole hog with some of these other complementary and supplementary things, have the dialogue with your medical team because some may be really helpful and some of it, there may be evidence that it’s not.  So, you know.

Andrew Schorr:

Well, you can see that Esther and I have been on a long journey together and just‑‑for those of you watching (? look), not always, but there are people living longer with lung cancer now.  There are people living longer with advanced prostate cancer, with advanced breast cancer.  We have a long way to go with a lot of the cancers, but we have are making progress with some of them, the blood cancers that I’ve been affected with.  Twenty‑two years ago I didn’t know I’d be there for the next month or the next year, and you’re stuck with me.  Here I am, and I hope Esther and I are going to be together for many, many years with our 33rd wedding anniversary coming up.

So then you say, well, how can I take control back from this where I started maybe feeling like a victim.  And that’s what we’re talking about here.  So this field that Dr. Subbiah talks about and now Raquel is very involved in on her end, these are relatively new and not having proliferated everywhere.  But you have the benefit here.  Take this into your life, we hope.  Have conversations with people like this or seek them out, seek the online resources.  All right.  I’m not going to preach anymore.  I just hope this program has been helpful.

I want to thank our guests.  Dr. Subbiah, thank you for being with us once again from MD Anderson and your work in integrative medicine.  Thank you so much.

Dr. Subbiah:

Absolutely.  Thank you so much for having me and this opportunity to talk with all of you.

Andrew Schorr:

Well, we’ll do it again.  And Raquel Forsgren joining us from Chicago and taking us through a guided program.  I’m going to look up those videos.  Thank you so much.

Raquel Forsgren:

Thank you.

Andrew Schorr:

Esther, here’s a big hug and kiss.  Thank you for being with us.

And one other thing is we’re going to have some resources for you that we’ll put with this program on the Patient Power website.  It will have links to all the things we’re talking about.  So be sure to look out for that.  We’ll be sending you e‑mails with alerts.  Tell others about this.  Have them sign up with Patient Power so they always are in the know as we do more programs.  And let and Esther and Tamara, our producer, know.  You can always send a comment to questions@patientpower.info.  Let us know if this was helpful.  Okay?

I want to thank the Patient Empowerment Network for this program and achieving wonderful support from Celgene and from Genentech and Helsinn and Novartis, and we really appreciate them being part of the cancer community, not just developing drugs but supporting our discussions like this one.  I’m in California.  We have our guests around the country and Esther upstairs where we live here.  I’m Andrew Schorr.  Remember, knowledge can be the best medicine of all.  Thanks for joining us.


Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. 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 Do I Stay Strong During Lung Cancer Treatment?

How Do I Stay Strong During Lung Cancer Treatment? from Patient Empowerment Network on Vimeo.

How can I stay strong during lung cancer treatment? Can I tackle fatigue, nausea and anxiety through lifestyle changes? Two noted experts, Dr. Christine Lovly, Assistant Professor of Medicine in the Division of Hematology-Oncology at Vanderbilt-Ingram Cancer Center and Dr. Ishwaria M. Subbiah, Assistant Professor of Palliative, Rehabilitation & Integrative Medicine at The University of Texas MD Anderson Cancer Center both discuss how they work with lung cancer patients and their families daily to address effective evidence-based interventions that can be used to help patients stay strong during treatment.

ASCO 2017 Roundtable: Progress in Lung Cancer on Multiple Fronts

At the recent American Society of Clinical Oncology meeting (ASCO), Dr. David Carbone, Director of the James Thoracic Center, James Cancer Hospital and Solove Research Institute at Ohio State University Comprehensive Cancer Center and Dr. George Simon, Professor in the Department of Thoracic/Head and Neck Oncology at The University of Texas MD Anderson Cancer Center, share highlights from the meeting including what they call “progress on multiple fronts in lung cancer.” Dr. Carbone discusses how patients should demand a genetic workup on their tumor and his free genetic testing initiative at Ohio State. Dr. Simon shares how some immunotherapy and chemotherapy combinations are showing promise and how small cell lung cancer patients could potentially also benefit. Watch the video below to hear from two lung cancer experts.

ASCO 2017 Roundtable: Progress in Lung Cancer on Multiple Fronts from Patient Empowerment Network on Vimeo.

What Records Should You Bring For A Second Opinion Appointment?

From the Lung Cancer Town Meeting in September 2016, Janet Freeman-Daily interviews a panel of lung cancer experts about what are the essential records patients should bring to their appointment when getting a second opinion. The panel includes the following experts:

  • Nisha Monhindra, MD Assistant Professor of Medicine, Hematology/Oncology Division, Feinberg School of Medicine Robert H. Lurie Comprehensive Cancer Center of Northwestern University
  • D. Ross Camidge, MD, PhD, Director Thoracic Oncology Clinical and Clinical Research Programs University of Colorado Denver
  • David D. Odell, MD, MMSc, Assistant Professor, Thoracic Surgery Robert H. Lurie Comprehensive Cancer Center of Northwestern University
  • Timothy J. Kruser, MD, Assistant Professor, Radiation Oncology Robert H. Lurie Comprehensive Cancer Center of Northwestern University

Check out the full video below to hear all of the experts advice.

What Records Should Your Bring For A Second Opinion Appointment? from Patient Empowerment Network on Vimeo.

Getting A Second Opinion From A Rural Location?

From a CLL Town Meeting in September 2016, Janet Freeman-Daily interviews a panel of cancer experts about how patients in rural or remote locations can get second or multidisciplinary opinions from larger facilities or academic institutes. The panel includes the following experts:

  • Nisha Monhindra, MD Assistant Professor of Medicine, Hematology/Oncology Division, Feinberg School of Medicine Robert H. Lurie Comprehensive Cancer Center of Northwestern University
  • D. Ross Camidge, MD, PhD, Director Thoracic Oncology Clinical and Clinical Research Programs University of Colorado Denver
  • David D. Odell, MD, MMSc, Assistant Professor, Thoracic Surgery Robert H. Lurie Comprehensive Cancer Center of Northwestern University
  • Timothy J. Kruser, MD, Assistant Professor, Radiation Oncology Robert H. Lurie Comprehensive Cancer Center of Northwestern University

Check out the full video below to hear all the experts advice.

 

Getting A Second Opinion From A Rural Location? from Patient Empowerment Network on Vimeo.

How Can Cancer Patients Contribute to Science?

Interview with D. Ross Camidge, MD, PhD, Director, Thoracic Oncology Clinical and Clinical Research Programs; Professor of Medicine, Division of Medical Oncology University of Colorado Denver

During the recent Lung Cancer Town Meeting in Chicago, Illinois, Janet Freeman-Daily interviewed Dr. D. Ross Camidge about how lung cancer patients can contribute to cancer research. Dr. Camidge says there are several ways that are each equally important. Watch the full video below to find out.

 

How Can Cancer Patients Contribute to Science? from Patient Empowerment Network on Vimeo.

Getting a Grip on Anxiety While Fighting Lung Cancer

Panel Interview with Susan Varghese, RN, MSN at MD Anderson, Dr. Rebecca Suk Heist, MD, MPH at Massachusetts General Hospital Cancer Center, Dr. George Simon, MD, FACP, FCCP at MD Anderson, and Melinda Dunn, Stage IV Lung Cancer Survivor, Patient Advocate

At the LUNGevity Live Town Meeting at MD Anderson Cancer Center in March 2016, Andrew Schorr interviews the panel about understanding anxiety, depression, and the statistics of lung cancer. Susan Varghese begins by explaining that by patients talking and asking their healthcare team for help allows them to understand and then prescribe the appropriate care for them. Dr. Heist and Dr. Simon caution patients to interpret statistics with care because the are only averages, and not specifically about you. Every case and person are different. Melinda adds to that by saying she overcame her cancer by refusing to believe the statistics because “it’s not me, Melinda, it’s some group.”

Watch the full video below to hear all about anxiety and statistics from four lung cancer experts.

Getting a Grip on Anxiety While Fighting Lung Cancer from Patient Empowerment Network on Vimeo.

Helping to Manage Side Effects in Lung Cancer Treatment

Interview with Susan Varghese, RN, MSN at MD Anderson Cancer Center

Andrew Schorr interviews Susan Varghese, a 10-year nurse practitioner veteran with lung cancer patients, about the side effects associated with treatment. She begins by explaining some of the common side effects, like the ones listed here:

  • Fatigue
  • Change in appetite
  • Nausea
  • Vomiting
  • Diarrhea
  • Constipation

Initially, she suggests managing your side effects with over the counter drugs, but if that does not work there are several new drugs available. These drugs can be administered before, during, and even after treatments. The main goal is to keep a healthy, nutritious diet and maintain your weight so you have the strength to fight your disease. And remember, communication with your medical team is key to getting the care you need. Watch the video below to hear all of Susan’s knowledge and advice.

Helping to Manage Side Effects in Lung Cancer Treatment from Patient Empowerment Network on Vimeo.

Healing vs. Curing

Healing vs. Curing from Patient Empowerment Network on Vimeo.

Founder and CEO of CanSurround, Meg Maley, alongside a panel of Niki Koesel. MSN, ANP, ACHPN, FPCN, Eric Roeland, MD, and lung cancer survivor Randy Broad discuss healing vs. curing and how a healthcare team should focus on what it means to each individual patient.

Combatting Cochexia and Appetite Changes

Combatting Cochexia and Appetite Changes from Patient Empowerment Network on Vimeo.

Founder and CEO of CanSurround, Meg Maley, alongside a panel of Niki Koesel. MSN, ANP, ACHPN, FPCN, Eric Roeland, MD, and lung cancer survivor Randy Broad discuss ways to combat cochexia and appetite changes during cancer treatment.

Symptoms of Lung Cancer

Symptoms of Lung Cancer from Patient Empowerment Network on Vimeo.

Founder and CEO of CanSurround, Meg Maley, alongside a panel of Niki Koesel. MSN, ANP, ACHPN, FPCN, Eric Roeland, MD, and lung cancer survivor Randy Broad discuss two of the most prominent symptoms of lung cancer, shortness of breath and anxiety. There are great drugs and energy conservation techniques to combat the cycle of those two symptoms.