Tag Archive for: blood cancer
What Does Remission Mean in Myeloma?
What Does Remission Mean in Myeloma? from Patient Empowerment Network on Vimeo.
The concept of remission in multiple myeloma can be complex. Myeloma specialist, Dr. Peter Forsberg explains. Want to learn more? Download the Find Your Voice Resource Guide here.
Dr. Peter Forsberg is assistant professor of medicine at the University of Colorado School of Medicine and is a specialist in multiple myeloma. More about Dr. Forsberg here.
See More From The Pro-Active Myeloma Patient Toolkit
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Transcript:
Dr. Peter Forsberg:
I also think that one thing that can be a little challenging in multiple myeloma is the concept of remission. I think in multiple myeloma what we think of as remission may be a little bit different than in other diseases, and I know that can be confusing for patients. Remission may just mean an interval of myeloma control. It may still be a time where you’re on active therapy or where the active therapy that you’re receiving hasn’t changed too substantially, but where the myeloma is under control whether it’s still detectable or not. So, that name can be a little bit different than what we think of as remission in other types of cancer and that can be a little confusing.
Current Clinical Trials – MPN
This resource was originally published by MPN Advocacy here.
Clinical trials are studies conducted using human participants by researchers to test how well a new drug, medical device, diagnostic tool, therapy, treatment or form of prevention, works to improve health, cure a disease, or improve quality of life. The goal is to test efficacy and safety.
Clinical trials are studies conducted using human participants by researchers to test how well a new drug, medical device, diagnostic tool, therapy, treatment or form of prevention, works to improve health, cure a disease, or improve quality of life. The goal is to test efficacy and safety.
If you have a disease, such as a myeloproliferative neoplasms (MPNs) where other treatments, specifically all other treatments available for your disease, have failed to produce good results, participation in a clinical trial might provide you with a successful treatment before it becomes available to others. It may also provide better results for treatments you are currently using. Clinical trials offer hope for many people and an opportunity to help researchers find better treatments for so many diseases. It is an admirable role to play in the process if you find yourself willing and able to do so. Clinical trials are at the heart of the medical advances achieved by the MPN community to treat myelofibrosis, essential thrombocythemia, and polycythemia vera.
Always consult your physician(s) and healthcare team when contemplating such a decision.
How Can The CLL Society Help You?
How Can The CLL Society Help You? from Patient Empowerment Network on Vimeo.
Dr. Brian Koffman, co-founder of The CLL Society, explains its mission and goals. Dr. Koffman reviews programs and services that assist chronic lymphocytic leukemia (CLL) patients and their loved ones.
Dr. Brian Koffman is the cofounder, chief medical officer, and executive vice president of The CLL Society.
See More From The Pro-Active CLL Patient Toolkit
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Transcript:
Dr. Koffman:
Hi, I’m Dr. Brian Koffman. I’m a retired family doctor, and I’m the cofounder, chief medical officer, and executive vice president of the CLL Society. And, what, you ask, is the CLL Society? Well, the CLL Society is a 501(c)3 not-profit that focuses on the unmet needs of the CLL community in terms of supporting, educating, advocating on behalf of, and researching what needs to be done in the CLL community.
The CLL Society is very proud of the programs that we offer. So, among the programs that we offer, the backbone is a website that covers everything from the very basic kind of information – frequently asked questions – to really the latest research that’s coming out.
Also, on the website, CLLSociety.org, we have a whole toolbox, and in that toolbox, there are lists of acronyms. There are links to other CLL resources. There are links to CLL experts around the country. There are spreadsheets to help you with your lab sheet – lab results so you can follow them and mark the trans-Excel spreadsheet. We also do trial educational forums across the country with places like MD Anderson, Dana-Farber, or the National Institutes of Health.
And, we have 30-plus support groups in Canada and the USA that meet generally on a monthly basis, so there’s a peer-to-peer interaction, and we provide education to all of those. And, one of the programs that I’m most proud of is for patients who don’t have access to an expert. We provide free virtual consultations with CLL experts from the top institutions through a Zoom-type platform that’s HIPAA-compliant so patients can ask their questions to a remote expert, that expert reviews their medical records, and then to their local hematologist so they get the benefit of a consult that they wouldn’t otherwise.
Fact or Fiction? CLL Treatment & Side Effects
Fact or Fiction? CLL Treatment & Side Effects from Patient Empowerment Network on Vimeo.
Are you confused about chronic lymphocytic leukemia (CLL) treatment information? Dr. Javier Pinilla-Ibarz from Moffitt Cancer Center reviews current CLL treatments, emerging research and common side effects to help you decipher fact from fiction.
Dr. Javier Pinilla-Ibarz is Lymphoma Section Head and Director of Immunotherapy in the Malignant Hematology Department at H.Lee Moffitt Cancer Center & Research Institute. Learn more about Dr. Pinilla-Ibarz here.
View The Fact or Fiction? CLL Treatment & Side Effects Resource Guide
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Transcript:
Patricia Murphy:
Welcome to Fact or Fiction: CLL Treatment and side effects. First, let’s thank our partner, the Leukemia and Lymphoma Society. Today, we’ll debunk common misconceptions about CLL treatment and side effects. That’s chronic lymphocytic leukemia. I’m Patricia Murphy, your host for today’s program. Joining me is Dr. Javier Pinilla. Thank you, Dr. Pinilla, for joining us. Tell us a little bit about yourself.
Dr. Javier Pinilla:
How are you doing, Patricia? So, I am a hematology oncologist. I’m the head of the lymphoma program at the H. Lee Moffitt Cancer Center. In my practice, in my clinic, I see mostly, almost 80%, 90% of patients with chronic lymphocytic leukemia.
Patricia Murphy:
Okay. Before we get started, just a note. This program is not a substitute for medical advice, so please refer to your medical care team with questions. Dr. Pinilla, give us a brief overview of how CLL and Leukemia are – chronic – CLL is currently treated. What are the options?
Dr. Javier Pinilla:
Well, right now, most of the time – in fact, it’s the most common scenario that we encounter on a weekly basis. Patients get diagnosed with leukemia. That is really a bad word for most of the patients, and they really come to our clinic as a very, very scared and anxious about the diagnosis. However, we don’t really treat most of them. Almost 70% of the patients don’t require therapy to start with, right? So, as you may know – and many, many people who really gonna watch this program will know that we really do active surveillance and watchful waiting.
For many, many months, sometimes years, and there is some specific criteria that patients need to really accomplish to really start therapy. What are those? Well, developing an anemia, low platelets, large lymph nodes that really produce some symptoms, B-cell symptoms like, you know, night sweats, drenching night sweats, fevers, weight loss, lack of appetite, and fatigue, and so on, right?
So, there is no doubt that there is reason why we need to treat. Regarding the treatment of this condition, well, we have been lucky because in the last, let’s say, seven, eight years, there has been a plethora and really large and new advances in the therapy for this condition. We went from the very old chemotherapy strategies in the oral form or even the intravenous form, chlorambucil, a very old drug, more than 50 years in the ways, through fludarabine, Cytoxan, even bendamustine. These last three were used in combination with what we call immunotherapy.
So, chemoimmunotherapy was very, very popular, let’s say, 10 years ago after the chlorambucil went away as a really not very optimal therapy. So, the main standard of therapy for CLL for many years in combination of chemo and immunotherapy with really good results. However, patients unfortunately in many situations will really relapse.
So, we always talk to the patient that when the times of therapy comes, we gonna really put the patient in remission in many cases. In some cases, it’s not really a full remission. It’s a partial remission. But this, most of the time, happen for a certain period of time upon after the patient will require a new therapy. That was kind of the dilemma and the things that we are being really experienced in for years.
However, the introduction of target therapy, that was really a revolution in CLL. That’s happened in many other cancers, including other leukemias, like a chronic myeloid leukemia. These new drugs really came to really change the paradigm, to really fix the duration of chemoimmunotherapy to really taking pills, we can really get a patient in a remission, or at least in a very good control of the disease for a longer period of time as soon as the patient continues to take the drug.
Obviously, we’re talking about BTK inhibitors that really, really extremely popular, and truly, today, a standard of care for any patient who has newly diagnosed CLL who requires therapy in any form, high risk, low risk, older, younger, with comorbid condition, without. This is very well reflected in NCCN guidelines with category 1, in this case, to the most common
the case I ready to try. So, we know that. We know that, and we really see patients who really enjoy these drugs for a long period of times. However, obviously, this always come with another issues, like intolerance, and in some other cases, progression, right?
So, it’s – BTK mutation has been described and has been seen in high-risk patients. So, this being the standard, and really, we enjoying this, but we have a very recent, last May, a new drug approved. It was already approved for patients who really failed other therapies but now also, we have the ability to get this drug as an initial therapy.
This therapy, in this case, is called a BCL-2 inhibitor. The name is venetoclax, in combination with another immunotherapy I mentioned before that was classically used with chemo. In this case, venetoclax, BCL-2 inhibitor, is combined with obinutuzumab, a drug with a very powerful anti-CD20 monoclonal antibody.
What really has brought us this new strategy? Well, it’s coming back that the paradigm, as mentioned before, changed from fixed duration with chemoimmunotherapy to long term durability for pills, but now, we have also the opportunity to discuss with patients the possibility to really offer them, in certain conditions, not for everyone – again, we need to really understand that we need to customize the therapy for patients, right?
But this new combination really, really will allow us to – many patients who don’t want to stay in therapy for life, so we can really offer back time-limited therapy with substituting the old chemotherapy by this drug called BCL-2 inhibitors, venetoclax. They work very similar to chemotherapy, and they are extremely effective, you know, cleaning or at least reducing, and sometimes completely eradicating most of the CLL cells in the bone marrow of patients with CLL.
However, we still no have longer follow-up in the front line. We have a longer follow up in the second line when patient has failed chemo or other drugs with these combination with venetoclax. In the front line, the data are very, very good, but the – it’s relatively short follow-up. So, patients receive care for a year, and they stop. So now, we are following those patients. There was a recent publication in the New England Journal that really described this population with this trial called CLL 14, but definitely, we need to really continue to see how these data evolve as we have seen with a routine for many years.
We have already seven years follow up on ibrutinib, and it’s something that keep going, and this is what is gonna help us to understand who and what can really be given these kind of therapies, okay?
Patricia Murphy:
It sounds like we have made tremendous progress with CLL. What kind of clinical trials should patients be investigating? What are they – what’s out there?
Dr. Javier Pinilla:
Well, there is no doubt that a lot of people until now were really looking for venetoclax front line clinical trials. Now it’s available in the clinical practice. However, we’re still trying to figure out combination of drugs, right? For example, in this case, I have mentioned we have a very good drug like ibrutinib in front line. We have all the BTK inhibitors that are coming up such as acalabrutinib. We have other PI3K inhibitors that are being not very successful in the front line, right to the second line, like idelalisib, duvelisib, even copanlisib.
And other drugs, like I said, ibrutinib. So, we have a plethora of drugs, really available as clinical trial outside the ones that have approved. However, one of the things that we are really starting to explore in the recent year is how we combine all these mechanisms of action. The most typical combination that we are really now under trial is the combination of two or three drugs, as happens in many other forms of cancer.
So, this combination of these three – some of, two or three of these drugs, is very, very well studied now in an integral trial, the ECOG, the alliance trial, we gonna start to see those trials, and of course, our patients in front line will have the opportunity. Besides that, we gonna see more and more trials are going to combine patients who are already in chronic therapy with ibrutinib with a second drug, with the goal to in the future be able to discontinue therapy because it’s one of the issues that ibrutinib has these days. Patient takes the drug for life.
Patricia Murphy:
What are the things that you’re thinking about when you’re considering treatment for your patients, when you’re making those decisions?
Dr. Javier Pinilla:
Well, I think it’s important to really notice and to really understand my patient, is that we need to provide education. We need to provide education, and obviously, every – many, many patients ask me, “Doctor, what I should do?” Right?
But I think it’s very important for me to understand what is the goals of every patient, right? Age, comorbid condition, way of life, people like to travel versus staying in the same place. So, I try to really educate about the options because we are very lucky that we have multiple options. We also understand – so, what is gonna be the difficulty is to really get therapy A versus therapy B and how much control or monitoring they require, and finally also, as mentioned before, to try to customize therapies for different patients.
I always say that – we discuss in the beginning that not everyone with CLL requires therapy at the beginning. However, when people require therapy, not everyone requires therapy for the same reason. Some people may require therapy because they are anemic, okay, extreme anemia. Why? Because their bone marrow cannot really produce enough red cells or even platelets. Why? Because they is full of CLL cells.
So, those patients in my opinion, they can really do very well with strategies as BCL-2 inhibitor in combination and alone. Why? Because these drugs is able to truly and very, very efficaciously really eliminate the CLL.
So, we go into another scenario. Patient with very high, bulky lymph nodes in the neck, axillary and abdominal, for example, with enlarged spleen who may have very, very severe B-cell symptoms. We note that we cannot apply anything. There’s no doubt that introduction of Bruton’s tyrosine kinase inhibitor or even – is extremely successful in reducing the symptomatology very fast and shrinking the lymph nodes in a very short period of time. So, again, I would say that it’s black and blue or like a black and white and – different.
Patricia Murphy:
Black and white.
Dr. Javier Pinilla:
Black and white. Thank you. So, but the truth is different patients may require different strategies, and obviously, patients’ preference are really, really important.
Patient may come back to be in therapy for life, maybe patient maybe don’t care. Patient may really, really, really want specifically shorter therapy. So, I think we need to really understand that in the options and start to work with them, also depending on the presentation on the needs for therapy.
Patricia Murphy:
Yeah, yeah. Let’s talk a little bit about molecular testing for a moment. What can you learn from molecular testing? When will that –
Dr. Javier Pinilla:
Yeah, molecular testing is quite important. I think that there’s different tests that we really perform, right? NCCN guidelines, iwCLL, has really, really laid out the fundamental tests that we need to provide, or we need to really do at least – they say “at least” when the patient requires therapy. Why? Because obviously, it’s gonna be an important part of how we are going to see the patient and how the patient is going to behave, even during therapy.
So, we are discussing about obviously FISH tests, FISH tests, that’s a chromosomal analysis that is very, very classical and has been done for years for classical chromosome abnormalities, 11q, 17p, that is the bad, always what you think that is the bad one. It’s true that it may even, with the new therapies, has shorter period of responses, 13q, trisomy 12. So, we set out with this one.
Besides that, what is the other important thing? The mutation status of the heavy chains in the immunoglobin, the IGHV mutation status. Very, very important because even when the new therapies made no difference, while we know patient with unmutated immunoglobulin may really have different outcomes in the long run. The truth is that with ibrutinib, for example, or venetoclax, we don’t see the difference in outcomes, but still we need to see what’s happening in the long run. So, the good news is that with the new therapies, we don’t see difference that we used to see with chemotherapy that unmutated immunoglobulin patients, they may really fail more often than mutated ones.
However, I think it’s something important that we need to implement. Last, but not least, is the TP53 mutations. I think it’s something that it should be implemented, and I think the teaching point is that TP53 mutations, maybe also NOTCH1 or SF3B1 – other mutations that may really give to patients a bad outcome in the long run, at least with the chemoimmunotherapy, it’s something that also can be done, or at least it’s something that will be important to really incorporate to our patients. Not in all the cases, but in some, TP53 for sure.
Patricia Murphy:
Let’s play a little fact or fiction game. I’ll tell you some of the things we have heard from patients with CLL, and you can tell me if it’s fact or fiction.
Dr. Javier Pinilla:
Sure, absolutely.
Patricia Murphy:
Here we go. First one. And I think we’ve already solved this, but I’ll just say it’s a concern of patients. “You have to treat CLL right away.”
Dr. Javier Pinilla:
That’s not true, as I mentioned before, and I tell you, most of the patients will really come really scared into our work clinics and with a very high anxiety levels do not require therapy. So, I think it’s important. So, it’s very specific research. So, most of the people are – many people think that because their white blood counts continue to raise, this is the criteria for therapy, while it’s a very specific reasons of doubling time, but really, really relatively rare.
So, it’s relatively rare to be – need therapy for count or high count. And most of the people has high blood counts, they don’t feel it. Besides that, I think the emphasis is that if the patient needs therapy, well then, they need therapy. But they already anticipate that.
Patricia Murphy:
Yeah. Okay, here’s another one. “Watch and wait can go on for years, and I may never need treatment.”
Dr. Javier Pinilla:
You’re right. So, there is a special population of patients, mainly with certain characteristics such as, for example, 13q by FISH, 13q deletion by FISH, and IGHV mutation in heavy chain immunoglobulin, those groups of patients that is the classical ones that not all of them, but some group of them, may never require therapy, and there is patients in my practice that have been followed for years and years, 10, 15, or even 20.
Patricia Murphy:
Man, that’s very interesting. How about this one? “Chemotherapy is the only available approach. One size fits all when it comes to treatment options.”
Dr. Javier Pinilla:
Well, as I mentioned before, at length it’s not really chemotherapy. I wouldn’t say that chemotherapy is not an option these days, but however, with introduction of the new therapies, I think it’s moving away. It’s moving away to the therapy for CLL patients. And I think – I have to admit that we really, with the incorporation of these time limited therapies that I discussed before, chemoimmunotherapy is using less and less.
In the community, maybe because the incorporation of the new drugs it takes longer, it still may be used, and they may be used, but definitely in academic institution, I can tell you for sure, chemoimmunotherapy is almost gone.
Patricia Murphy:
That’s a great point about community care. That’s a great point. So, as a patient, I may be able to look into more therapies if I ask my doctor, perhaps?
Dr. Javier Pinilla:
Oh, absolutely. Absolutely. I think many doctors in the community and academic institution, they know that, but obviously, I think patient with CLL need to understand that there’s multiple options today, right? And another thing that you said, that chemoimmunotherapy is the only option, it is not really the right answer for our patients, right? There is no doubt it is an option, but there’s many others that need to be discussed with our patients to see how we gonna fit those different therapies for a specific patient as was mentioned, try to customize it, try to really adopt the different goals and really, really, outcomes for each individual patient.
Patricia Murphy:
Yeah, I think we tackled this one a bit, but it’s probably worth mentioning again. How about this one? “I have to take inhibitor therapies forever.”
Dr. Javier Pinilla:
Forever. That’s right. BTK inhibitor, I mentioned before, and mostly – all the BTK inhibitors, even the PI3K gamma inhibitors that they are proving second line now, they are being described – or they are being studied that they are taking anti-disease progression, or an acceptable toxicity, right? So, that’s the reason. So, maybe we’d say, “Well, on remission. Can I stop therapy?” Well, we do not recommend that because the data that we have from the clinical trials, patients continue therapy. And we note, as far as patient continue therapy, patient gonna do well.
So, the question is, what happens if you stop therapy? Well, we know that some patients may really have a relapse very, very fast, we call flare, classically happening in the lymph nodes – tumor flare – while other patients may really take longer to really have relapse.
[00:37:10]
So, we cannot – it’s very, very hard to really advise, and it’s something I do not advise, to stop therapy because we don’t know how the patient’s gonna really behave. However, there’s no doubt in certain situation when patient may have toxicity, chronic toxicity, patient may discontinue the drug. Some of these patients, they have been switched to another strategy, or some of them decide to say, “Okay, doctor, leave me alone. I wanna recover, and then after that, we’ll see if I really want to get in something else or I want to wait until my disease come back.” So, some take different strategies.
Patricia Murphy:
All right, one more. “It doesn’t matter if I miss one dose of oral therapy.”
Dr. Javier Pinilla:
Well, there is no doubt that the compliance is always a big issue on chronic therapies, oral therapies, and we really emphasize the importance to really, you know, give these drugs in a daily basis as being prescribed.
No doubt that there’s two issues here, the financial toxicity, the fact that some patients may really have a very high copayment, so they may want to skip doses to save money. That’s really, really unfortunate, but happen, right? The second one, obviously, is people who may really have significant side effects of the drug and may not want to retake the drug.
So, I think these things that need to be discussed with the providers, with doctors, to see how better we can really manage these situations. Let’s say an intolerance, maybe adjusting the dose, dose reduction. In financial toxicity, it’s a challenge, right? We try to help our patients, multiple foundations, Leukemia Lymphoma, many others, but I have to really say, sometimes this may not happen. So, it’s one of the big frustrations in some patients and doctors when we encounter this situation.
Patricia Murphy:
It really stresses the importance of a doctor-patient relationship.
Dr. Javier Pinilla:
Absolutely, absolutely. But once again, I think we always discuss about compliance. I think compliance is very, very important for the success of any therapy, so we definitely support the fact that patients should really take the drug as prescribed.
Patricia Murphy:
Totally. What else do you hear from patients? Anything that you hear that you feel like you have to bust some myths about when you’re talking with your patients?
Dr. Javier Pinilla:
Well, as you can imagine, in the – doing the phase of active surveillance, and because patient is really quite scared, they looking for any alternative medications or even therapies that they are out there that they think are gonna save their lives, right?
And although I quite liberal with things, we always pay attention to some of these things that are likely to really have any effect and sometimes may be deleterious for the health of patients, so I always really make them aware that there’s very, very few things that are being tested, and there’s not much evidence that any of the alternative medicines that we have really out there can have any influence.
Everyone referred to the green tea extracts as something that is being described in the literature with curcumin, so these the couple of things that we may really give to our patient as a way to feel that they are doing something because I think it’s the frustration of the patient that they have to wait. They are in surveillance, but they are not doing nothing.
However, my best advice to my patient is to really try to really get in a very good and healthy lifestyle, right? To really prove, you know, nutrition in the ways that everyone knows but very few people does, exercise as possible, and try to really keep themselves as healthy as possible because we know that there’s other things that can happen, for example, infection is another thing that may also really, really complicate the active surveillance strategies that we really recommend.
Patricia Murphy:
Right, right. What about clinical trials? Do you hear misconceptions from your patients around enrolling in clinical trials?
Dr. Javier Pinilla:
For sure. For sure. It’s very, very classical. People always – many patients, unfortunately, they think a clinical trial is an experimental drug that has never been proven in patients. And although it could be true, most of the time, they are a drug who has a very, very important background. They have an important, you know, scientific evidence why we try them. It’s true on phase one trials, they really are tested for toxicity. Phase two trials, it’s for somewhat efficacy. However, I think we need to discuss specific basis what kind of trial.
Another important misconception is most of the people think they really gonna get placebo. The famous placebo versus drug issue. It’s very rare to see placebo trials in oncology, right? Most of the patients, what they’ve been randomized, another kind of bad word for patients. “Oh, I been – I gonna be randomized in the placebo.”
Well, No. 1, placebo arm is very rare, and the randomization is standard of care versus something that we believe gonna improve the standard of care. Let’s say ibrutinib in comparison with ibrutinib plus something else, okay? Something else, okay?
Patricia Murphy:
Yeah, yeah. Let’s talk a little bit about side effects. You mentioned before that sometimes it’s hard to get patients to comply long term with treatment. What kind of things are they dealing with?
Dr. Javier Pinilla:
So, there is many, many side effects, completely different depending on the drugs, right? So, every drug, as you can imagine, has different side effects. Obviously, the side effects that we discussing these days are the ones in relations to the patients who really have chronic therapies, right?
So, we talking about the BTK inhibitors, specifically ibrutinib. We know some of these patients may have a continuous bruising or really even rashes in the skin. Diarrhea may happen in the beginning. They, for example, may have issues with blood pressure, may have multiple issues that fatigue, joint pains, bone pains, polyarticular arthralgias. So, all of these things that some of them they are acute. Obviously, we’re talking about arrhythmias of the heart, the atrial fibrillation, that may need to be taken care of by cardiology consultation. However, there’s another things that are annoyance. I would discuss, right?
Annoyance that the long run may really affect quality of life on our patient, and obviously, it’s important to really have a really good and honest conversation with – between patient and doctors to see how we can really provide these. I mentioned those reductions or even switching drugs, sometimes is also appropriate in situations where we cannot really fix the problem with those reductions.
Patricia Murphy:
It sounds like these side effects, while challenging for patients, can be managed with medications. Are there ways to manage these side effects?
Dr. Javier Pinilla:
Sometimes. Sometimes, they can be managed through certain medications. Sometimes they are chronic, and we cannot do nothing about. It’s the reason the dose reduction maybe is the best thing.
Patricia Murphy:
Yeah, yeah. Okay, here’s another fact or fiction game we can play about side effects. “There is nothing that can be done for my side effects,” and we kinda talked about this. “What about fatigue? What can I do about my fatigue?”
Dr. Javier Pinilla:
That’s actually a problem, a problematic one. I think – one of the things that I discuss with my patients sometimes, inpatients and other populations of patients with other comorbid conditions, sometimes, and I don’t say that always, fatigue can really be produced by multiple things. So, we always also emphasize the fact that they need to be seen by private physician to make sure there is no other issues concerning the fatigue, classical in diabetic patients. Something in other patients with other cardiac conditions, right?
However, the truth is that fatigue is one of the main issues in CLL, sometimes happening before therapy or after therapy, with or without according continuous therapy. So, maybe fatigue is one of the big ones and is one of the ones that we really, really hear from our patients very, very often. We may really, as mentioned before, trying to do an adjustment of the doses, but in times of management, that I would say is a challenging one.
Patricia Murphy:
It’s a tricky one. Sure. How about this one? “There’s an increased risk of secondary cancer and skin cancer from chemo.”
Dr. Javier Pinilla:
Well, secondary cancer is something that we see very commonly in patients with CLL. So, CLL by themself with no therapy can really predispose patients to have high incidence of secondary cancer. We know this for a long time. How chemotherapy or even the new strategies such as BTK inhibitors or monoclonal antibodies or even – can’t really change that. We don’t know.
What we know is that our patients live longer with these new strategies. So, the question is, one of the hypotheses could be that those patients, because they live longer, they have more chances to develop cancer. Skin cancer is extremely common in CLL patients, very, very common. And always the argument is that, “Well, maybe the immunosuppression due to the leukemia condition, maybe they predisposed to that. The question is, how drugs really eradicate or control a disease can affect this incidence. That’s something that we don’t know.
There’s some anecdotal evidence that some patients, after getting certain therapies, may really have more of this skin cancer. Other patients do better. Still, it’s hard to really generalize.
Patricia Murphy:
Sure. This one kinda gets back to the doctor-patient relationship. “I shouldn’t bother my team with side effects.”
Dr. Javier Pinilla:
Well, obviously there’s a reason we follow patients. We follow patients on a regular basis to really see how they’re doing, what kind of side effects they have, what they are doing. I was mentioning that with fatigue, we may not do much.
Some cases when the patient has with arthritic inflammation of the joints, that we have seen, well, steroids may – for a short period of time – may work. Obviously, oral pains, we still can really prescribe some Tylenol or things that can really improve that pain. For the diarrhea, many things to do. For the cramps for example also, we CoQ10, a calcium supplement, so it’s always seems that we can really introduce, obviously, for the nausea, something easily to treat.
So, I think the best thing is to really have the regular visit with the doctor and discuss. I always really tell my patients always, write it on a piece of paper the things that they need to ask because many, many times, with the rush of the clinics, patients really forget about the really important thing what they come in for.
Patricia Murphy:
Right. Right, and great idea to write down your questions. How about this one? “Natural supplements help with side effects.”
Dr. Javier Pinilla:
Well, at least what I can tell you in my opinion, there is no data about that. There is no doubt that – it depends on what kind of natural supplement. I may really allow my patient, if I see there is not really a potential toxicity to try, and no doubt that they have some benefit.
Patricia Murphy:
Okay, well we’ve talked about a lot of treatment and side effects and myths. As an informed patient, I may want to go out on the internet and find out all I can about CLL. What should I be looking for? What should I be careful about when it comes to online awareness and health literacy?
Dr. Javier Pinilla:
Very, very important topic that I love to really discuss with my patients. I always say that some patients kind of intoxicate themselves with multiple websites and with different backgrounds.
I think we – I do recommend them to really go to the websites, to the websites who really provide a very fair and really clean and important information. I would definitely – we were discussing about the Leukemia Lymphoma Society, CLL Society, Patient Power, to really – National Cancer Institute’s website, places that they have very well filtered information that we can really give to the patient. There is no doubt there’s many others not in this list, but I think we always have to be aware that there’s other websites that may not really provide really, really a good information or may really confuse our patients. So, I like to always really go to the sources that I really trust the most.
Patricia Murphy:
Yeah, so reputable sources and always checking with your doctor, obviously, about things that you’re considering.
Dr. Javier Pinilla:
Absolutely. Absolutely. I always tell to my patients, “You go there, you look at that, you read, but then after that you have a question. Come because sometimes you may have misconceptions.”
Patricia Murphy:
Okay. Cancer treatment is always progressing. How hopeful are you about future treatments for CLL?
Dr. Javier Pinilla:
Very, very much. I think we have been seeing tremendous progress in the last 10 years, and I think we gonna continue to go in this direction. I think there’s many more drugs that are coming down the pipeline in the clinical trials. Even we have drugs for patients who has resistance to, you know, BTK mutations.
Maybe in the future, we gonna see with people who really fail, BCL-2 inhibitors in the different ways. I think CAR-T cell technologies, CAR-T cell therapies, also they are coming to CLL to more advanced phases to people who already fail multiple lines of new therapies. So, I am very, very hopeful about how the future really comes, in terms of new therapeutical opportunities for our patients with CLL.
Patricia Murphy:
Dr. Javier Pinilla, so great to talk to you. Thank you very much for joining us today.
Dr. Javier Pinilla:
You’re very welcome. Thank you so much.
Patricia Murphy:
And thank you to all of our partners. To learn more about CLL and access tools to help you become a proactive patient, visit www.powerfulpatients.org.
Get The Best Myeloma Care NOW: A Physician’s View
Get The Best Myeloma Care NOW: A Physician’s View from Patient Empowerment Network on Vimeo.
Advocating for yourself is critical when diagnosed with multiple myeloma. Dr. Peter Forsberg details the value of collaborating with your healthcare team on treatment decisions.
Dr. Peter Forsberg is assistant professor of medicine at the University of Colorado School of Medicine and is a specialist in multiple myeloma. More about Dr. Forsberg here.
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Transcript:
Patient education and self-advocacy I think are critical in multiple myeloma. Myeloma is a complicated disease. Getting your head around it can be challenging. Beyond that we have more and more treatments. Treatments are fairly complex. Our goals can be pretty different patient to patient. So really, patient education can be a key to understanding that and removing layers of complexity from something that can be a little challenging to get into.
I think self-advocacy is also really important in that, sometimes you can feel swept up into a wave of what the next treatments are gonna be, what the next steps are. So, making sure you’re taking time to voice your opinions or concerns for yourself, to make sure that you’re not leaving stones unturned in terms of what your best options are, what the best next steps are, what treatments or testing might be available.
I think myeloma, maybe more so than even some other diseases because it’s such a unique type of cancer, one where patients are often dealing with it for many years… Making sure that there’s a good level of education that evolves over time can help make sure that the patients get the best out of their treatments; to make sure that they’re able to have the most fulfilling experience dealing with their cancer and with their cancer team, and making sure that they’re advocating to get all options available to them in the mix potentially.
I think patients are often very thoughtful about knowing that providers are busy and that clinic can be kind of fast-paced, but I want to make sure that they know that the last thing that they’re ever doing is bothering me or other members of my team when they ask questions. I think one of the keys to making sure that everybody is comfortable with the steps we’re taking with their myeloma is to recognize that it’s a team. And the patients and myself and other members of my team, you know I think that the goal is for all of us to be on the same page and to understand what we’re working towards.
So, I think that my philosophy about how best to take care of patients tis to try to make it as collaborative as possible. To make sure people understand what we’re doing and why. And to be all on the same page I think you have to feel comfortable to take a moment to say, “Why are we doing this?” or to voice concerns about what’s going on or what the next steps might be.
How Can Patients Learn About Developing CLL Research?
How Can Patients Learn About Developing CLL Research? from Patient Empowerment Network on Vimeo.
Dr. Danielle Brander explains why it’s important for chronic lymphocytic leukemia (CLL) patients to stay up-to-date on developing research and treatment news. Dr. Brander also shares resources for learning more about clinical studies.
Dr. Danielle Brander is Director of the CLL and Lymphoma Clinical Research Program at Duke Cancer Institute. Learn more about Dr. Brander here.
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Transcript:
Dr. Brander:
I think it’s very important that patients and their caregivers stay informed and advised of opportunities to participate in ongoing research. I think there’s a misconception that with all the favorable progress in treatment options available for CLL, that there’s no longer the need for clinical research participation.
Though, there are a lot of novel options available for CLL, there’s still a lot of ways that we can improve care for patients. That is, there are trials with the next-generation inhibitors or for patients traditionally with harder to treat CLL or may become resistant to the novel agents, there’s a lot of trials looking into how do you combine the novel agents to give patients the best options. And then a lot of the research, too, are not just in the treatments.
But as our science advances into looking at other markers of the CLL cells, or what we call the depth of response, how much CLL you kill with the treatments and how low of a level we can get in terms of detection. This may result in a situation where patients have the opportunity to receive novel treatments, have a really good response, and then potentially stop the treatments and be followed off of therapies, so have the benefit of novel treatment but not with having to go on an ongoing drug forever and ever.
When I talk to a patient about opportunities for clinical trials, I’m really focused on the patient in front of me. That is, I wouldn’t offer or talk about a trial if I didn’t think it potentially could benefit the patient in front of me.
And again, though we’ve had a lot of advances in treatment options, there are certainly a lot of ways that we can engage and hopefully help patients moving forward. There’s been recent studies across all cancers showing that unfortunately a very low percent of patients are offered and enrolled and participating in clinical research studies, and I think it’s really important that patients know there’s a lot of opportunities out there that potentially could benefit them.
The different ways to be advised and informed, again, are some of the resources online educationally for CLL and lymphoma that often post about different sites for clinical trials. There’s a clinical trials.gov web site that all sites in the United States that are enrolling trials with patients have to log clinical trials, and though that has to be updated, it often can be a good beginning site.
But in the end, hopefully the best resource is your treatment team, your oncologist, and your other team that can help point you to what trials might be eligible for you, either at the location where you are or close by.
The last part I’ll point out is though we focus a lot on the treatment clinical trials, in CLL, where patients don’t always need treatment right away or may have treatment and have a response and then have a long period of time afterward, is that many centers are helping to engage patients in research that is not necessarily done during the time of their treatment. Again, to try to understand why some patients have a longer course until they require treatment, or why they might have responded differently, or other ways we can improve their care.
What Is the Impact of Cytogenetics on AML Care?
What Is the Impact of Cytogenetics on AML Care? from Patient Empowerment Network on Vimeo.
Understanding the cytogenetics of your acute myeloid leukemia (AML) can help determine which treatment option might be best for you. Registered nurse Mayra Lee defines this complex term and the role it plays in AML care.
Mayra Lee, RN, is an outpatient clinic nurse at Moffitt Cancer Center. Learn more about Mayra Lee.
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Transcript:
Cytogenetics would be the term that I would say patients are unaware of and don’t understand it quite often. It’s probably the first time you hear it when you come and sit down and we talk about the disease because the first thing you want to know is what is my prognosis and what is the treatment. Well, a lot of that is made through the cytogenetics of the disease.
We use these terms and we don’t often explain what all of that means. And what that means is that the disease itself has chromosomes, has mutations, has genetic information that will help us determine which treatment is a better option for you or is there a genetic mutation that you perhaps have that we now have medications that are used to treat that genetic mutation as a said just a few seconds ago. Like for the three, if you have that mutation, we now have medication to treat that where we didn’t have that five years ago or even four years ago.
So, that terminology of cytogenetic and biomarkers are very new. They’re not something that the general public knows or understands very well.
But when you come to academic centers like where I’m at right now that is all we’re going to talk to you about because we want to do personalized medicine. And personalized medicine means what is it that your disease looks like because your disease does not look like the other AML patients. Your disease is your disease and it looks different and it’s going to behave differently. And so, we want to know about those mutations. So, so much of your treatment, so much of the prognosis is so closely linked to that that I think it’s an important thing to know. It’s important to understand it. It’s important to ask. It’s important to pause your doctor and your nurses and say, “I don’t understand what you mean by that. What does that word mean? Can you explain that to me?”
Facing Acute Myeloid Leukemia: Notes from a Survivor
In the spring of 2016, I was looking forward to a final year of teaching sociology before a retirement promising new adventures. I felt great and had no reason to think I had any health problems. When my doctor suggested some routine blood work, I readily complied. When the results showed abnormally low white blood cell counts and he recommended a hematologist, I readily complied. When the hematologist ordered a bone marrow biopsy, I still readily complied. When the results came in, my life changed forever.
The biopsy revealed that I had acute myeloid leukemia. Since this disease can kill within months, they recommended immediate treatment. The next day I checked into a hospital and started chemotherapy. I received the standard treatment for this disease for the preceding 40 years: a “7 + 3” cocktail of cytarabine and idarubicin. I spent five and a half weeks in the hospital dealing with various infections brought on by immunosuppression and patiently waiting for my blood counts to recover. As they did, I received the best possible news. The chemotherapy had achieved a temporary remission that bought me time to explore my options for longer term treatment.
As I awaited the molecular and cytogenic data on my cancer, I was told to expect two possibilities. If there was a relatively low risk of relapse, I might get by with additional chemotherapy. If there was a high risk of relapse, a stem cell transplant was in order. When the results placed me in an intermediate risk category, I had a tough choice to make. After researching my options, getting second opinions, gathering advice, and reading my doctor’s cues, I settled on the transplant. My logic was that if I opted for more chemo and it didn’t work out, I would deeply regret not having the transplant. If I had the transplant and it didn’t work out, at least I would feel as if I gave it my best shot and it just wasn’t meant to be. Despite the 15-20% mortality rate from the transplant itself, I was at peace with my decision to proceed.
My benefactors were two anonymous sets of parents who had donated their newborn infants’ umbilical cords to a transplant bank. Once we found two good matches, the cords were shipped to my transplant hospital, the cord blood was extracted, and it was transfused into my bloodstream. These stem cells just “knew” where to go to engraft in my bone marrow and begin producing a healthy new immune system. For the second time, I received the best possible news. Three weeks after transplant, one of my donor’s cells were 99% engrafted. With that result, I returned home for a prolonged recovery.
For the next few weeks, I faced daily clinic visits, blood tests, transfusions of platelets and red blood cells, growth factor injections, and lingering effects of my conditioning chemotherapy and radiation as well as the engraftment process itself. As the weeks turned into months, my recovery proceeded apace. It eventually became clear that I could claim the best possible news for the third time, as my new cells and old body got along with each other and there was no evidence of graft-vs.-host disease. Looking back over the entire process, my oncologist summarized it by saying “this is as good as it gets.”
Many people wanted to give me credit for surviving this disease. While it is tempting to claim such credit, I remain agnostic about whether anything I did had a material effect on my positive outcome. I think my survival was largely a matter of luck, chance, and random variation across AML patients. Nonetheless, there were several practices I engaged in throughout my treatment that deserve mention. At the very least, they brought me peace during a difficult time. And at the most, they may indeed have contributed to a positive outcome for which I am eternally grateful.
The first set of practices that sustained me was mindfulness, meditation and yoga. To the greatest extent possible, these practices helped me let go of ruminations about the past or fears about the future and focus on the present moment. Focusing on my breathing kept me centered as – like my breaths – each moment flowed into the next. Maintaining a non-judgmental awareness and acceptance of each passing moment kept my psyche on an even keel.
Rather than extended periods of formal meditation, I simply sought a mindful awareness of each moment, hour, day and week. I also went through a daily yoga routine even while receiving chemotherapy. Doing so helped me retain my identity as I weathered the toxic treatment and its inevitable side-effects. In the evenings, I used a technique called a body scan to relax and prepare me for a peaceful sleep. The cumulative effect of these practices was a calm acceptance of circumstances I could not change alongside a serene hope that all would work out for the best.
A second practice involved being a proactive patient. Perhaps it was my training as a social scientist that allowed me to bring an analytical curiosity to my disease and the treatments my doctors were deploying. I asked lots of questions during their all too brief visits, and they patiently responded to all my queries.
On several occasions, my proactive stance made a positive contribution to my treatment. When I developed a nasty, full body rash, it took a collaborative conversation between me, my oncologist, and infectious disease doctors to isolate the one drug among so many that was the culprit. I identified it, they switched it out, and the rash abated. On another occasion, I was able to identify two drugs that were causing an unpleasant interaction effect. I suggested changing the dosing schedule, they concurred, and the problem resolved. The sense of efficacy I received from this proactive stance also helped me retain a positive mood and hopeful stance during my prolonged treatment.
A third practice involved maintaining a regimen of physical activity. During my first, five-week hospital stay, I felt compelled to move and get out of my room for both physical and social reasons. I developed a routine of walking the halls three times a day, trailing my IV pole behind me. They tell me I was walking roughly 5 miles a day, and every excursion felt like it was keeping my disease at bay and connecting me with all the nurses and staff members I would encounter as I made my rounds.
When I moved to my transplant hospital, I was confined to my room but requested a treadmill that met the physical need for activity even as I sacrificed the social benefits of roaming the halls. But throughout both hospital stays and later at home, I maintained stretching activities, exercise workouts, physical therapy routines, and yoga to keep my body as active and engaged as my circumstances would allow. These activities also gave me a welcome sense of efficacy and control.
A fourth practice involved maintaining my sense of humor. I have always appreciated a wide variety of humor, ranging from bad jokes, puns and double entendre to witty anecdotes and stories to philosophical musings. Cancer is anything buy funny, which is precisely why humor has the power to break through the somber mood and fatalistic worldview that so often accompanies the disease. Using humor became another way of keeping the cancer at bay. It was a way of saying you may make me sick and eventually kill me, but I’m still going to enjoy a good laugh and a bad joke along the way.
Alongside these practices I could control, there were also beneficial circumstances beyond my control that worked in my favor. These included the privilege of being a well-educated white male that led to my being treated respectfully and taken seriously by all my health care providers. In addition, my doctors and nurses consistently combined skill and expertise with compassion and empathy in ways I will never forget or could ever repay. And finally, my privileged status and excellent care played out against a backdrop of strong social support from a dense network of family, friends, colleagues and neighbors.
A final practice that integrated everything else was writing my story as it unfolded. Upon my first hospitalization, I began sending emails to an ever-expanding group of recipients documenting and reflecting upon my disease, treatment and recovery. Narrating my story for others required me to make sense of it for myself. The ostensible goal of keeping others informed became a powerful therapeutic prod for my own understanding of what was going on around me and to me. While my doctors’ ministrations cured my body, my writing preserved my sense of self and a coherent identity.
I eventually sent over 60 lengthy reports to a group of roughly 50 recipients over a 16-month period. This writing would eventually serve three purposes. It was a sense-making procedure for me. It was a communication vehicle with my correspondents. And finally, I realized it could be a resource for others in the broader cancer community. With that insight, I did some additional writing about lessons learned and identity transformations and published the resulting account.
As I mentioned at the start, I will never know if any of these practices or circumstances made a material contribution to my survival. But they maintained my sanity and preserved my identity during the most challenging experience of my life. Regardless of the eventual endings of our journeys, sustaining and nurturing ourselves along the way is a worthy goal in itself.
Steve Buechler is the author of “How Steve Became Ralph: A Cancer/Stem Cell Odyssey (with Jokes),” which was recently selected as an inspirational “Suggested Reading” by the Leukemia and Lymphoma Society. He recently recorded a 5-part webcast series that expands on his recovery story here. Steve’s numerous blog posts, video presentations, and more may be found at www.stevebuechlerauthor.com and he is on Facebook at SteveBuechlerAuthor.
Fact or Fiction? AML Causes & Symptoms
Dr. Daniel Pollyea, an AML specialist, dispels common myths around the causes and symptoms of AML and shares advice so that you can identify credible resources for information. Download the Program Guide here.
Dr. Daniel A. Pollyea is Clinical Director of Leukemia Services in the Division of Medical Oncology, Hematologic Malignancies and Blood and Marrow Transplant at University of Colorado Cancer Center.
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Transcript:
Ross:
I’m Ross Reynolds. Today we’re gonna be debunking some common misconceptions about the causes and symptoms of AML.
And joining me is Dr. Daniel Pollyea. Dr. Pollyea, could you introduce yourself?
Dr. Pollyea:
Yeah. Hi. Good morning, everyone. I’m Dan Pollyea. I’m an Associate Professor of Medicine here at the University of Colorado, where I am the Clinical Director of Leukemia Service.
Ross:
I wanna emphasize to you that this program is not a substitute for medical advice, so be sure to consult your healthcare team when it comes to solid information about it. But you will get some background that I think you’re gonna find useful. And you might have some questions as we go along.
Dr. Pollyea, let’s start out with the basics. What are the causes of AML?
Dr. Pollyea:
Yeah. So, Acute Myeloid Leukemia, it’s a disease, a cancer of the bone marrow.
And it’s the result of an accumulation of mutation and chromosomal abnormalities that affect the DNA of a precursor cell in the bone marrow, otherwise known as a stem cell.
And those abnormalities accumulate until that cell can no longer properly mature, and it also can’t properly die. And so, a cell like that just makes copy after copy after copy of a cell until it crowds out the whole bone marrow with these sorta useless, immature cells.
And the end result of that is the failure of the bone marrow, which causes all of the problems associated with this disease. So, biologically, that’s sort of what happens to make this disease occur.
Ross:
What are some of the myths that you hear from patients that come in and they say, “Oh, this must’ve caused my AML,” but you have to tell them that’s not so?
Dr. Pollyea:
Right. So, I mean, this is one of the most frustrating issues for patients and their families after diagnosis. I mean, it’s a rare disease, only about 30,000 cases a year in the United States. And so, trying to associate a rare disease with external or environmental factors is difficult to impossible. So, although there are a variety of exposures that probably contribute to this disease, we have very little understanding of what those exposures typically are or how that all works.
So, there’s a few things that we know pretty well; large doses of radiation, either associated with like industrial accidents like the Chernobyl disaster, or some of the radiation therapies that patients receive for other types of cancer. Other types of chemotherapy that are used to cure other cancers can contribute to this disease in later years.
We know that there are certain precursor conditions that can evolve to AML, so a person with myelodysplastic syndrome, for instance, has a fairly high chance of someday evolving to develop Acute Myeloid Leukemia. But beyond these sort of a few associations, there isn’t a whole lot that’s known or proven.
Ross:
Now there is radiation associated with X-rays, and some people think that X-rays can cause AML. Is that true?
Dr. Pollyea:
Yeah.
So, I mean, I think a priori no because millions of people get X-rays every day, and only 30,000 people a year get AML. So, clearly it’s not a simple association between getting an X-ray and developing AML. But I think that there is an unknown interaction between environmental exposures and a person’s individual genetic makeup that makes a person more or less susceptible to developing something like AML with respect to exposure to the environment or X-rays and things.
So, while you cannot say that getting an X-ray will lead to AML, certainly there are some people who are more sensitive to the damage that’s done by something like an X-ray. And so, the best course of action is to be cautious and judicious about your exposure to these things, but not to not get these things when they are medically necessary.
So, that’s the challenging balance.
Ross:
Here’s something else we’ve heard, that weed killers can be a risk factor for AML. Is that true?
Dr. Pollyea:
I mean, I think there’s a lot coming out now about weed killers and their association with other types of cancers. Again, I go back to the limitation we have in that in only 30,000 people a year in the United States get AML. Millions of people are exposed to weed killers.
We’re statistically never going to be able to make a clear association. I think that there are certainly some risks for some people. Whether you’re that person who’s more susceptible to developing leukemia or any other cancer because of exposure to a weed killer is impossible to know.
So, like all of these things, I think the advice we have is you have to live your life. You have to do your best to sort of avoid things that you can avoid that you think would be… Or that may cause problems. But not to let those things prevent you from living a normal life.
I know that’s not a satisfying answer, but at the moment that’s the best answer we have.
Ross:
Is formaldehyde exposure another risk factor for AML?
Dr. Pollyea:
Yeah. We think that it is, and kind of along the lines of benzene. But, again, we think that those studies that have shown those types of association show it in very high amounts, amounts that most people in this country would not be exposed to. But I do think, or we do think that there is something to that, to formaldehyde somehow contributing to this.
Ross:
What’s the difference between a risk factor for AML and a cause of AML?
Dr. Pollyea:
Yeah. So, I think risk factors by definition are things that may contribute to AML. And a risk factor for AML by that definition could be walking down the street and having some exposure to radiation from the sun. A cause of AML is something that is a much more solid sort of well-understood factor.
Like I said before, having myelodysplastic syndrome, there is a high chance that that can evolve to Acute Myeloid Leukemia. And if that happens then the MDS, the myelodysplastic syndrome, could be considered or would be considered the cause of your AML. So, very, very different in terms of the amount of evidence that goes into making those determinations
Ross:
Is there a genetic component to this? Can this run in a family?
Dr. Pollyea:
Yeah. So, this is a disease of the genome.
So, I mean, in a lot of respects it is a genetic disease. But the question is very different when you ask is this an inherited genetic disease? Is this disease due to a gene that I inherited from a parent or could pass along to a child?
For many, many years, the answer from the medical community was, “No.” This was not considered to be a disease that clustered in families or that could be inherited. We now know that that’s not necessarily the case. There are some very rare cases where this does seem to travel in families or cluster in families. And we’re now beginning to understand who those people are and what those genes are.
But the vast majority of people with this disease did not inherit a gene to contribute to it and cannot pass this along to a child. This is a random, spontaneous event that occurred within one person’s own body and is not traveling within family. So, we’re learning more and more about this, but really, the vast majority of this is not an inherited genetic condition.
Ross:
You’ve mentioned gene mutations. What mutates a gene? What causes that to happen that could lead down the line to AML?
Dr. Pollyea:
Yeah. Yeah. That’s a great question. Most of the time we do not know the answer to that. These gene mutations occur spontaneously, randomly, and we don’t understand why they happen when they do happen.
And I know that’s, again, not a satisfying answer. It’s very frustrating, particularly patients come in, and, “I’ve lived a healthy lifestyle. I’ve done everything right. I exercise. I eat right. How could this have happened?”
These are things that for the most part are out of the control of a person. These aren’t impacted by your diet or your activity levels, what you eat or don’t eat, what you do or don’t do. That’s a real frustration. In the end, in almost all cases we don’t know or understand why these gene mutations or these, I call them mistakes in the body, occur when they occur. We don’t understand them.
And, Dr. Pollyea, someone asked if benzene can be a risk factor for AML.
Dr. Pollyea:
Yeah. So, benzene is one of the sort of rare environmental exposure associations that we do have clear associations with AML.
But the level of benzene that a person would need to be exposed to is really something that hasn’t been seen in this country in a very long time.
We’d be talking about like an industrial accident type exposure in almost all cases, so being exposed to a cleaning solution or some other fairly minor exposure to benzene, we don’t think is enough, in most cases, to prompt this disease. But benzene in very high doses, like an industrial accident, yes, that is something that we understand can certainly contribute or cause AML.
Ross:
Autoimmune diseases, such as arthritis, can they increase the risk of AML?
Dr. Pollyea:
Oh, boy. That is a really interesting one. So, there are papers in the literature that do support those associations. And I know in my own practice I certainly see that trend. So, I do think that there is something there. There is a proven association between autoimmune conditions and myelodysplastic syndrome, which I said before can be a clear precursor condition to AML. So, certainly, that is an association that is a possibility.
It can be a little difficult to tease out whether it’s those diseases that are associated with ultimately developing AML, or the treatments that people get for some of those autoimmune diseases. Those treatments can modulate the immune system in certain ways that may, in fact, contribute or drive the disease. So, that’s a difficult thing to tease out.
But in general terms, yes, I think there are some associations. Now not by a long shot everyone with an autoimmune disease gets AML. It’s a teeny, tiny fraction. But I think there is an association there.
Ross:
How easy is it to diagnose AML?
Dr. Pollyea:
Well, I mean, I think there’s very clear diagnostic criteria for AML. But I guess that doesn’t really answer the question. And we certainly have patients who come to us after many months of frustration without a clear diagnosis.
So, those scenarios can play out. Many times AML’s a very dramatic presentation, so people get very, very sick very, very quickly with extraordinarily high white blood cell counts and suppression of all the other blood counts that come from the bone marrow like red blood cells and platelets.
In those cases it’s pretty clear that there is a type of acute leukemia going on. There can be some difficulty distinguishing Acute Myeloid from Acute Lymphoblastic Leukemia; those are sort of like cousins, but very different and treated differently. So, it kinda runs the gamut. I mean, it can be pretty clear, but it’s sometimes missed, so yeah.
Ross:
This is a great lead-in to my next question, which is about the symptoms of AML. What should be the warning signs that this might be something you need to get looked at?
Dr. Pollyea:
Right. So, at presentation, the main symptoms are reflective of the fact that the bone marrow, the organ that makes all the cells of the blood, has failed.
So, that can cause severe anemia. Signs of anemia: a white sort of appearance, feeling dizzy or lightheaded when standing, short of breath, weak, tired, fatigue. Those are all pretty clear presenting symptoms for AML. Because the bone marrow also is responsible for making platelets that clot the blood, some people will present with a bleeding complication, or a very subtle rash made up of these particular red dots. We call that a petechial rash. And that rash can come on when the platelet count gets very low.
Sometimes a person will present with an infection or infections that don’t go away or don’t clear because of decrease in white blood cells, the infection-fighting cells of the bone marrow. Those are made in the bone marrow and can fail in the setting of this disease. So, those are the most common symptoms at presentation, symptoms that are reflective of bone marrow failure.
Ross:
You mentioned that sometimes the presentation could be very dramatic, and it sounds like the symptoms are very severe, very quickly. Is that always the case? Is that often the case?
Dr. Pollyea:
That is the case in, I would say, a minority of times. That’s usually the case. It’s more often seen in younger patients with AML. Typically, older patients with AML have a more smoldering course and a much less dramatic presentation, although this sort of very dramatic and dangerous presentation can happen in older patients, but it’s probably something like a third of the time that those very dramatic and medical emergency presentations occur.
Ross:
How important is early diagnosis?
Dr. Pollyea:
Well, I mean, it’s crucial. I mean, in particular in those cases where it’s a very dramatic and proliferative diagnosis, or presentation. A quick diagnosis and recognition of this condition is very important because the sooner a person starts effective treatment the better the ultimate outcome is.
I would say in general terms that applies to all AML patients, but certainly there’s some degrees of variation. So, there’s some AML patients that when I hear about their case on the phone from a referring doctor, it’s appropriate to see them next week in the clinic.
So, it’s not always a medical emergency, but we would never, even in those next-week-in-the-clinic patients, this isn’t something that can wait for weeks or certainly months. This is something that needs to be addressed fairly quickly.
Ross:
What are the best ways to manage those symptoms?
Dr. Pollyea:
Right. So, I mean, at presentation, all those symptoms, the best way to manage those are to start treatment as quickly as possible. So, impacting the underlying cause of this disease is the most important and critical factor to getting a person feeling better because all of these problems stem from the disease in the bone marrow, and so everything else that you do to sort of help a person’s symptoms are Band-Aids when you’re not talking about getting to the root cause.
So, that’s at presentation. Now once we start treatment, there are many potential side effects to any number of treatments. And it all is dependent on what treatment you’re getting and other things about you that will make this a significant problem in some cases. And in that setting, we do have ways that we can aggressively manage a person’s side effects.
Ross:
Can you manage all of the symptoms? Or can people still be experiencing symptoms even after they’re in treatment?
Dr. Pollyea:
Absolutely. So, a person with this disease, depending on how long they’ve had it and some of the features, may not be feeling back to their baseline self for potentially weeks or months after treatment starts in the best-case scenario. So, that can be very frustrating, but a person needs to sort of be able to continue to have a good outlook and stay positive.
Because we are able in many cases to make a big impact on this disease and return a person to their pre-disease quality of life.
Ross:
What are some of the myths that you hear, Dr. Pollyea, about the treatment? Some things that people come in to you saying they think that it helps, but there’s no science to back that up?
Dr. Pollyea:
So, myths about treatment, so many people have a lot of preconceived notions about the intensity of a therapy that they’re going to be asked to withstand. And although sometimes we do treat this disease very intensively, that’s not always the case, and now we have some very effective lower-intensity regimens that can be used in a variety of different scenarios.
There are a lot of people who have a lot of preconceived notions about a stem-cell transplant or a bone-marrow transplant and whether or not they would be eligible for this based on maybe what they’ve heard from friends or family, or what they’ve seen in the internet.
And those are often incorrect. And so, keeping an open mind about treatment options, and discussing those in detail with your doctor are really, really important.
Ross:
You mentioned sometimes it presents in young people, sometimes in older people. What’s sort of typical?
Dr. Pollyea:
This is a disease of predominantly older patients, so the median age of presentation is 68. So, that means that over half of the patients are over 68 years old at diagnosis. So, while this does happen, can happen in younger patients, that’s really an unusual situation. This disease is, like I said, it is predominantly a disease of older patients.
Ross:
There are some patients who I understand think that supplements can deal with the symptoms of AML. Is that accurate?
Dr. Pollyea:
You know, I mean, I think the supplement question is always a challenge. A lot of these supplements, or most of these supplements have never been tested with the rigor of treatments that we’re accustomed to in the medical establishment.
That being said, I won’t deny that some of the supplements can help patients based on what patients’ experiences are and what they tell me. I think what’s really important is just be very open and honest with your doctor about the supplements that you’re taking or want to take to ensure that there are no sort of unanticipated interactions with treatments.
Because I think most doctors are very open to having their patients care for themselves in the ways that they’ve become accustomed to, and they know their bodies very well, and we’re very open to that. But there are sometimes that a drug or a supplement might have a bad interaction with the treatment.
And so, a good example in my practice is antioxidants. So, there’s a lot of literature, a lot of interest in antioxidants as cancer-prevention treatment.
And a lot of that is not well-established, but still I don’t see much harm. But when it comes time to treating a cancer, that’s a very different situation. When we give a patient treatment to try to kill the cancer cells, many times we’re trying to provoke oxidation. That’s part of how these drugs and these treatments work.
So, if you’re taking those treatments, but also at the same time taking antioxidants, there’s the potential you could sort of be cutting your therapy off at the knees, fighting it with one hand behind your back. So, for the period of time when my patients are getting an active treatment, I ask that they don’t take it antioxidant.
And they can resume that in the future in the hopes of preventing another cancer. But the time to prevent with an antioxidant isn’t appropriate when you’re dealing with an active cancer. So, that’s just one example.
Ross:
Fatigue could be a symptom of AML, but there are a lot of causes of fatigue.
How do you differentiate between something that really could be AML and something that isn’t?
Dr. Pollyea:
Yeah. That’s a challenge because I think these are, as I said, older patients. And older patients have a lot of other medical problems. And older people get fatigued, just that’s unfortunately part of the normal aging process. So, we would usually make an assumption that a person’s fatigue and diagnosis is due to the leukemia, the anemia as a result of the leukemia.
But as we successfully treat a patient if they are responding based on their numbers and other objective criteria, but the fatigue is not improving then I think that’s where we would start to look at other contributing factors, and there can be many, so having an open mind at that point is important.
But at the beginning, this is such a monster of a disease, it’s so overwhelming, I think the focus is usually on assumption that the fatigue is due to the disease or to a treatment associated with this disease.
Ross:
This question: is loss of appetite a symptom of AML?
Dr. Pollyea:
Yeah. I definitely see that, hear that, so sometimes people come in and they say that. Sometimes it may not be a loss of appetite, but an extreme weight loss, so a lot of different types of cancer, including AML, can cause that, just basically unintentional weight loss.
A person’s not trying to lose weight. They’re eating what they think is their normal amount and they’re losing tremendous amounts of weight. So, those are both potential presenting symptoms with AML. And loss of appetite, unfortunately, can be associated with some of the treatments for this disease. And taste changes, things not tasting good, can all contribute to that as well, so those are all challenges that our patients face.
Ross:
How important is to get a second opinion? I mean, are all doctors like you pretty much on the same page when it comes to symptoms and treatment?
Dr. Pollyea:
So, this is a challenge. So, the answer to the second question first is unfortunately, no. A lot of this hasn’t quite been standardized. And some doctors, oncologists, cancer doctors, they’ll predominantly be treating the things that are common: colon cancer, breast cancer, prostate cancer. And they will probably only have a few cases of acute leukemia a year.
And so, their approach to this is going to be different than somebody who spends all day seeing patients with AML and thinking about AML.
So, a second opinion is a very nice thing to be able to do. The problem with this disease is that most times it doesn’t afford that opportunity. So, with other conditions you have some time to go out, read about it, talk to some different doctors, get a good plan together.
With AML, often that’s not a possibility. A person is so urgently sick that you have to sorta deal with the resources where you are. The best recommendation I have there, if you do find yourself in a situation where there’s not a lot of expertise is to ask your doctor to just call somebody in the region or email somebody in the region who may have that expertise.
And most doctors all over the country have that sort of resource or partner that they will go to and talk the case through with them, and maybe a transfer to one of those high-volume centers is appropriate.
And maybe that’s not a possibility or appropriate, but maybe you would benefit from just talking… Maybe your doctor would benefit from talking this through. But in cases where it’s not such a dramatic presentation, then yeah, for sure, I think a second opinion can be appropriate. But this isn’t something that can be sort of drawn out for long period of time.
Ross:
You know, when you find out something like this, your tendency might be to jump on the web and start searching for AML. How do you vet those sources that you look at? How do you figure out that their – what would be a sign that they’re bogus sources?
Dr. Pollyea:
Yeah. I mean, I think this field is so rapidly changing and the treatment that we have, that I would, for the most part, assume that what you’re finding on the web is not relevant and is not an up-to-date resource. So, the resources that I listed, the NCCN, UpToDate, the Leukemia & Lymphoma Society, I should mention.
A very important resource that has up-to-date information, and they have even phone numbers for patients and their families to call to get connected with the proper people in a particular city, so that is a really important resource. But I’d be really, really cautious about what you find on the internet because things are changing so fast in this field. There’s a lot of outdated and misinformation on the internet.
Ross:
Well, then there’s outright scams. One of the things you mentioned before we went on is be cautious if someone’s asking you to put money upfront, or if it’s a nonmedical facility. What are some things that people should watch out for?
Dr. Pollyea:
Yeah. So, one of the things that is so important in our area is clinical trials and participating in clinical trials. Patients who opt to do this and receive experimental therapies can sometimes get the treatment of the future, get a drug that’s not currently available through the FDA, but may have a lot of promise.
And this is the way that we fight this disease. We’ve recently had an onslaught of approvals for AML and that’s because the patients being willing to participate in sanctioned clinical trials. So, participating in a sanctioned clinical trial is crucial, and it’s always a recommendation of all leukemia doctors.
When you participate in a conventional clinical trial, you’re asked to sign a consent form that explains what you’re doing and why. There is a confirmation that this has been vetted by an institution’s regulatory board that is prioritizing the safety and well-being of you, the patient. This has been approved by the FDA as a clinical trial. Nobody would ever ask you to pay money. That’s not ethical to participate in a clinical trial. Insurance covers whatever standard of care. And the clinical trial covers anything that isn’t.
So, if you find yourself in a situation where you’re not being asked to sign a consent form, where a clinical trial has not been reviewed by a regulatory board, where your doctor is not a leukemia specialist, where the FDA has not sanctioned the treatment, all of those are alarm signs.
Because there are people out there that are preying on patients in a desperate situation, a very difficult time in their life, and giving them sort of false hope and leading them down paths that are not legitimate.
One easy thing to do to sorta check to see if a clinical trial is legitimate is to go onto clinicaltrials.gov.
This is a resource set up by our national healthcare system that now feeds in every legitimate clinical trial from all over the world, needs to be registered on clinicaltrials.gov. So, if you can’t find your clinical trial on clinicaltrials.gov, I would have a lot skepticism and caution about that.
Ross:
Like what advice do you have for people when they’re first diagnosed? What are the first things they should try to do?
Dr. Pollyea:
Yeah. I mean, that reaction is totally normal and natural. I mean, many times these people are perfectly healthy or have been perfectly healthy, and this news is a complete shock.
And so, it is normal and appropriate to have some period of grieving for the healthy life that you are losing. But I would also, while giving yourself that time to grieve, first, draw on your support system, your family, your friends. Allow them to help you. Accept that assistance that they have. And to be optimistic because we are getting so much better at treating this disease.
I had mentioned before, there has been an onslaught of approvals for drugs in this area the likes of which hasn’t been seen in decades. We have new tools and weapons in our arsenal that we couldn’t have dreamed of even a few years ago.
We in our community are very excited and hopeful about the future and we hope that that will translate ultimately to patients, but being depressed or being down, being scared, all of that is normal.
All of that is expected. Anyone would feel like that. Allowing yourself to have those feelings and emotions is important, as long as it doesn’t get in the way of doing what you need to do to fight this disease.
Ross:
It sounds like you’re hopeful about new treatments for the disease. How about a cure? What’s the science? What’s the medical science say about that? Are we getting any closer to that?
Dr. Pollyea:
We are getting closer to curing this in more cases. So, like I mentioned before, as bad as this is, we can already cure some subsets of patients. There’s one type of Acute Myeloid Leukemia called Acute Promyelocytic Leukemia, APL. It’s an uncommon form of AML, less than 10 percent.
But we can cure close to 99 percent of people with APL. And APL, 15 years ago, was universally the worst form of acute leukemia to get. So, that dramatic 180 that we’ve seen in APL, we are hoping to translate into other forms of AML.
Some other forms of AML have cure rates as high as 50 percent, 60 percent, 70 percent in the right setting. Sometimes we can cure patients with a stem cell transplant fairly reliably. So, we are very, very hopeful about our ability to continue to make progress and cure more and more and more of these patients. That’s the future that we see.
Ross:
Dr. Pollyea, thank you so much. And thank you so much for ending on such a positive note. We really appreciate it. And thank you for joining us for this program today.
To learn more about AML and to access tools to help you become a proactive patient, visit powerfulpatients.org. I’m Ross Reynolds. Thanks for joining us.
Coping With the Emotional Side Effects of AML
A dynamic panel discusses the important aspects of care for AML patients, with a focus on the emotional side effects, research on new treatments underway and finding suitable clinical trials.
Coping With the Emotional Side Effects of AML from Patient Empowerment Network on Vimeo.
Transcript:
Beth Probert:
Hello, I’m Beth Probert, and I am a patient advocated and ambassador with Patient Power.
I am also an MPN patient. Thanks for joining us for this Patient Empowerment Program in partnership with The Leukemia and Lymphoma Society. Today, our program is: Coping with the Emotional Side-Effects of AML. And we are joining our AML community.
We’re gonna focus on where we’re headed with treatment of Acute Myeloid Leukemia; what patients can look forward to in the coming year.
We will also answer questions that you can submit to AML at patientpower.info. And please note that we cannot provide specific medical advice over the internet. And it wouldn’t be fair to you. We always recommend that you seek care from your own doctor or AML specialist, and that’s how you will get the best treatment for you.
I’d like to start now and introduce our panel. And we’ll start off with Dr. Thomas LeBlanc. A medical oncologist, palliative care physician, and patient experience researcher from Duke Cancer Institute. Welcome, Dr. LeBlanc.
Dr. LeBlanc:
Hi, thanks for having me.
Beth Probert:
And I would like to introduce Michelle Rajotte. She is the Associate Director of the Leukemia Lymphoma Society’s Information Resources Center. Michelle has been with LLS for 13 years. Hi, Michelle.
Michelle Rajotte:
Hi, good to be here.
Beth Probert:
Thank you. And last but not least, I’d like to introduce our patient advocate today, James Bond. And James has survived Multiple Myeloma for 27 years, and AML for the past 7 years. James and his wife, Kathleen, have shared their story in 29 states. And patients can contact him directly at his email, which is Jim.Bond48@gmail.com.
So, thank you for joining us today, Jim.
James Bond:
Happy to be here.
Beth Probert:
Great. Well, Dr. LeBlanc, I would like to start with you. Tell us a little bit about your background in AML and palliative care, please.
Dr. LeBlanc:
Sure. So, by training I’m an oncologist. But when I went through my cancer care training, I realized that oftentimes we fail to really attend to some of the issues that are most important to patients and families. And those might be things related to symptom burden, quality of life, emotional well-being, communication, understanding of prognosis.
And so, I ended up pursing additional training in palliative medicine where those types of issues really are the focus. And in doing so, got a sense that really adding specialist palliative care to cancer care and blood cancer care particularly, really could improve many aspects of the experience for patients and families.
And ultimately that is what my clinical practice and research have come to focus on. But in my clinical practice, I largely see patients with myeloid malignancies, including Acute Myeloid Leukemia and some related conditions.
Beth Probert:
That is so interesting and very unique because very often we see our doctors and we don’t get the whole palliative side of it. So, I can honestly and personally say that that is just a wonderful added bonus. Thank you.
And Michelle, can you tell us a little bit about your role at LLS, and really what the goal of the information resource center is?
Michelle Rajotte:
Sure. So, I’m part of the Information Resource Center at Leukemia Lymphoma Society. Which, The Leukemia and Lymphoma Society’s main goal is to help find a cure for Leukemia, Lymphoma, Hodgkin’s disease, Myeloma, and improve the quality of life of all patients and their families.
And IRC is apart of that. So, basically, what we do is – it’s staffed by information specialists who are master level, either social workers, nurses, or other healthcare professionals who’ve been trained in blood cancer. And we can do anything from answer questions, provide disease information, help with clinical trial searches, find different support resources, refer to other organizations if we need to for other resources. But really, it’s anything that someone needs in the moment.
So, we’ll talk with them over the phone, through email, or through chat online, and we figure out what it is that they need based on talking to them, or whatever they provide to us. And then, provide them with the resources and support they need.
Beth Probert:
Wow. And that is just invaluable. And we definitely need to bring focus to the cancer patients and what your department could ultimately provide to them. Thank you.
So, Jim. You are a long-time survivor. How has your cancer diagnosis impacted you emotionally?
James Bond:
Well, it’s been like riding a roller coaster. My care-giver wife, Kathleen, Kathleen is sorry she can’t be joining us today. But the lowest point, of course, was getting diagnosed with a deadly incurable blood cancer. My first one, Multiple Myeloma. And then the second one, AML, many years later.
And so, what we tried our best to do is, to try to even out that roller coaster ride emotionally. And, I’ll give you an example, after 10 years of dealing with Myeloma, I was told, Jim, there’s nothing left that can help you, you need to go to a hospice. And that was obviously crushing.
And what we tried to do is pull each other up and say, “Look, we’ve been through tough spots before.” And we figured out that just rely on the doctors, rely on our own research ability, and they’ll be something coming up. And we were able to figure out, hey, there’s a clinical trial that was mentioned to us, and within a month of being told to go to a hospice, we were out of town in a clinical trial, and within two weeks, I was told, “You’re in remission.”
So, that was a tremendous high. And again, what we try to do when we get really good news is pull each other down and try not to be so excited, but we try to even things out. And that’s very difficult to execute, but for 27 years now, we’ve had a good deal of experience. There are a few other tings we do emotionally, we say, “Look, let’s do all we can, and then let’s not look back and second guess ourselves.”
And even to make it more normal, we cut off all cancer discussions with ourselves, ideas, or with a family member at 8:00 p.m. our time. We say, “You know what? Let’s just do what we’re gonna do at night, and let’s defer that to the morning.” That tends to let our emotions calm down and let us live more normal lives. At least in our minds.
It has not been easy. It’s been very difficult and emotionally at times, we’ve actually played a role of trying to lift up the medical team who, the AML diagnosis in particular, they explained to me, “Jim, you’re 64 years old,” When I got AML, that was seven years ago. They said, “Your chances of survival are not good. The only way you can live is through a fourth bone marrow transplant. And this one has to be not from your matching sister, but from an unrelated donor, if we can find one.”
So, they really encouraged me to consider just hanging up, but our approach, and this helps us emotionally is, no, we’re gonna treat this thing called cancer like a problem. We’re gonna put it in front of us, and we’re gonna deal with it as analytically, or unemotionally as we possibly can. And lo and behold, the doctors, as they’d come around in my, I don’t know, 10-week stay in the hospital, whatever it was, they would keep trying to say, “Jim, don’t get your hopes up. This might not work out.”
And it did work out, and we found ourselves much better off by, I do my favorite thing, and that is, I make myself exercise each and every day. And sometimes that exercise is not much, it’s walking with my IV pole around the floor section when doing a transplant.
Or it’s walking on my treadmill on snowy icy Ohio days like today. But that helps me emotionally because it gives me something that’s not cancer, it’s quiet time to think, and it really led to something that’s been just magical in terms of helping both of us emotionally.
When I had to leave town to do the clinical trial, my wife, Kathleen, got to thinking as a long-term volunteer of the American Cancer Society, she realized that there are not enough people in the country aware of these things that the ACS has called, “Hope Lodges.” So, she founded, launched, and leads, to this day – this was 13 years ago, she launched the first one. And I was not a cyclist, but I saw a link between the exercise that I think is so vital for me emotionally and physically, and this bike ride. So, I decided to buy a bike and trained. And I’ll be darned, I’ve ridden it every year four days, 328 miles from Cleveland to Cincinnati.
Beth Probert:
Wow, well that is really inspiring.
James Bond:
Thank you. And that helps me tremendously emotionally because that training and riding takes up a good three and a half, four months of my year, and I look forward to that, and the fundraising is tremendously exhilarating because I get to hear from people that I don’t hear from that often.
Beth Probert:
Yes.
James Bond:
So, the key there is emotionally, I think, is just having a long-term plan, and not letting –
Beth Probert:
And Jim, I’m just gonna jump in really quickly, this is amazing information. So, hold that thought, we are going to jump on some of the thoughts you said, and I do want to say real quickly, I love the, “We” in that. We.
James Bond:
Oh, absolutely.
Beth Probert:
And we’ll click back onto that. So, I’m gonna hop over now to Dr. LeBlanc. And could you go through, with your vast experience, what are the key emotional side effects that you see your ALM patients facing day to day?
Dr. LeBlanc:
Yeah, this is such an important question, and it’s one that we don’t ask often enough, and we don’t talk about these issues very often, unfortunately. So, I’m really excited that we’re having this webinar, first of all. And I’ll tell you, it’s important to recognize as well, every patient, every person is different. So, there is not one quintessential AML experience. That’s really important to recognize.
But at the same time, when we have studied this issue and interviewed patients, and care givers, and family members, there certainly have been some common themes that have come through about people’s experiences. And one of the one that is, I think, particularly important to recognize is the sense of shock at this diagnosis. Now, acute leukemias, we call them acute because they tend to come on very quickly and suddenly.
And many of the patients we see will say things like, “I was fine three weeks ago. And now I can’t even walk up a flight of stairs.” And, “I’m so tired, I’m taking naps, this is not like me. I usually run marathons, and now I can only run a couple miles, something is going on.” And this really degenerates, for many, people over the course of day or a few weeks.
And sometimes it means they end up urgently in the hospital and are told, “You can’t leave. Something’s going on, we don’t really know what it is, but we’re concerned. You might have leukemia.” And if they’re not at a large medical center, they may get shipped off hours away from home to a place that’s not familiar where they don’t know anyone.
So, that shock and suddenness of the diagnosis makes everything else much more difficult, and it sometimes creates, even, social isolation related to where AML is treated. Where it tends to be treated more so at academic centers than it is in the community, although, certainly, some of these treatments are provided in the community.
But patients getting high-dose therapies do tend to come to large research centers. So, we’ve certainly seen that issue impact many patient’s experiences. The other one that comes up quite often, that really compounds the decision making and the emotional difficulties, is the issue of uncertainty. So, unlike many cancers, we really don’t know what to expect when a person is diagnosed with AML. And everyone asks, “Well, what stage is this?” and we don’t really have stages for this disease.
We, certainly, have ways that we can try to get a sense for what we might expect for the patient who’s sitting before us. And we do all kinds of fancy testing, and we talk at length about those issues, but at the same time, we really can’t say what’s going to happen to you, my patient sitting across from me who I’m trying to help guide through the process.
And there are actually a lot more risks associated with Leukemia treatments as you heard Jim talk about. A stem-cell transplant is a difficult and risky process, and sometimes that’s part of curing AML, or hoping to cure AML. But even high-dose chemotherapies in the hospital, some people actually do have really difficult complications, and even can die from those treatments, and yet, those are the treatments that usually are required to cure a person.
So, we have to have these difficult decisions made sometimes under a lot of distress emotionally, and amid the suddenness of this diagnosis, where we say, this is probably the best treatment for you, and it gives you a chance at cure, but it’s not a guarantee. And some people end up not making it out of the hospital. And usually what happens is, that’s just such difficult information. Many folks shut down and they say, “I don’t know, what should I do. Tell me what to do.”
Or they’ll turn to a family member or a friend who might or might not be around and available during that difficult time, especially if they’re in another city away from home. So, these are some of the things we’ll commonly see when patients are newly diagnosed with AML.
Beth Probert:
Wow. That is very intense. And there’s obvious emotional connections. And sometimes we hear someone’s diagnosed, and we completely forget that emotional side. So, I wanted to ask you, as well, you’ve been involved with research into the relationship between the emotional stress in AML patients and the overall prognosis. Could you please explain how the study was conducted, and what were some of the prevailing results of this study?
Dr. LeBlanc:
Sure. So, we did a longitudinal study of patients with AML who were being seen and treated on our in-patient service. So, these were mostly patients getting high-dose chemotherapy who would be stuck in the hospital for a month or even a bit more.
Like Jim described, getting these really intensive treatment regiments. And this was a study basically aimed at helping us better understand what people go through when they live that. And certainly, I’ve seen that in caring for many patients with AML, as have our nurses, and other members of the cancer care team, but actually, there has been very little formal, objective study of the patient experience with AML and related blood cancers.
So, what we did is we actually surveyed patients using validated instruments, and we assessed their symptoms, their quality of life, their overall distress levels, and in addition, we assed their understanding of their illness. Their understanding of what we call, “prognosis,” The idea of what the likely outcome of the treatment or the disease is going to be. And we did all of those – that whole battery of assessments every week when they were in the hospital, and then when they were out of the hospital, we did that every month.
And we followed patients for six or even upwards of 12 months, and different things happened. Some people went into remission and were cured, some people had relapses, some people went into transplant, some people had transient remissions, or even multiple relapses, got additional treatment. And by following patients over time, we were able to develop a profile of the patient experience with AML and look at different versions of that. Including, what people understand about their illness, and how that relates to their overall emotional well-being.
Beth Probert:
That is amazing. And was there something that just jumped out real quickly as far as the largest response rate you saw when people were taking care of that emotional part?
Dr. LeBlanc:
Well, the concerning thing that we found, which unfortunately is an issue across all of cancer care is that many people who are diagnosed with AML, especially when newly diagnosed, really don’t have a good understanding of the likely outcomes.
And it’s certainly not for lack of talking with patients and families about these issues, but it probably is a manifestation of the fact that this usually happened suddenly, as I mentioned, and it’s so emotionally overwhelming and difficult that it’s actually really difficult to contextualize the information that’s provided. And we, I think, end up overwhelming a lot of patients and families with so much information, that sometimes there’s a bit of a forest and trees problem, where maybe the most important factors don’t always get explained clearly or don’t come through well.
And we don’t always go back and check in about whether we did a good job of explaining things, which is unfortunately a shortcoming that most of us struggle with in taking care of patients. Communication of complex information is very difficult.
So, we found that many folks didn’t understand, for example, that the treatment they were receiving maybe wasn’t likely to yield a cure, which is true in some instances of AML. Or they might not have had a very good understand of the risks. So, one study, for example, suggests that AML patients may actually think the treatment is way more risky than it really is. And is that prompting some people to not receive intensive treatments that maybe could be the right choice for them and the most helpful for them. So, that was the one main interesting finding.
And then, related to that, unfortunately we also found that many patients who do come to more accurately understand the outcomes that are most likely with their particular situation, some of these are better than others, everyone’s different, the more accurately people understand their illness, there tends to me more emotional distress and sadness. Perhaps realizing that this is a very difficult disease to treat. And unfortunately, when we were doing this study, this was before we have eight new drugs approved in the last two years.
So, hopefully some of this has changed. But that’s why we’re having this webinar, and why we need to talk more about these issues.
Beth Probert:
Absolutely. So, now, Michelle. I definitely see that your role at LLS plays a huge part in this. And in your experience, how do you deal with this? What resources seem to be the most effective that you can provide patients in coping and the emotional side of this cancer diagnosis, and also, taking parts of what Dr. LeBlanc just said, I would love to hear from you now and what your role is.
Michelle Rajotte:
Sure. I think it’s different for different people. We’ll talk to people who want to know everything, and we’ll talk to people who just say, “Just tell me the basics, I can’t get overwhelmed right now.” And it also depends on where they are in their cancer journey. Are they just diagnosed; are they relapsed? I think a big piece is being able to talk to other people who can relate to what they are going through.
So, other people who have been through this already and have gotten to the other side and feel like, okay, it can get better, there is hope. Here’s some things that might help. Because unless you’ve been through it yourself, I don’t think you can completely understand. You can empathize, you can be there for someone, but your friends and your family may not be able to give you that support that someone could that has been through it.
So, for example, at LLS we have the Patty Robinson First Connection Program, which can help over the phone to be able to talk with someone. And they may be across the country, but they may be very similar in background to you and be able to answer some questions that you have while you’re going through things.
There’s an LLS community where you can go on and talk with people. We have a lot of online support groups. There are online chats that are set up to be able to talk with, again, others, it could be across the country, they’re people you may have never had the opportunity to meet. Or if you’re not doing well, or you’re in the hospital, or your immune system’s compromised, you still can reach out and get that support.
And it’s not going to be something where you physically have to go somewhere, but there’s those options too. Or someone may not be ready to go sit in a group and talk about what they’re going through but can sit in front of a computer and just say, “All right, I really do need to talk to someone.”
Also getting professional support from a social worker, or a counsellor, or just anyone who can help you get through this because it is extremely stressful. And some people think, “Oh, I really don’t need that.” But it may be exactly what you need just to help you get through it.
Also, pulling in friends and family. And again, sometimes they may be more stressful because they don’t completely understand, and even though they’re trying to help sometimes it may have the opposite effect, but the intention is there, and it’s good to have them there, even if it’s just to drive you to a doctor’s appointment. And help you understand what the doctor’s talking about.
Beth Probert:
Wow, that is very impactful. It sounds like you really give the patients a complete tool kit as far as how to have these conversations and the unbelievable amount of resources that are available to them. So, that is invaluable. Thank you, Michelle. We’ll get back to you again.
And Jim, going back to you, did you reach out to your doctor in regards to this whole emotional turmoil, and you said earlier the, “Roller coaster.” Was that a talking point with your doctor, by the way, on how you’re feeling and how to cope? What direction did you take when you were first diagnosed, and was your doctor part of the conversation?
James Bond:
Well, we’ve been very blessed, very lucky. My first doctor who diagnosed me, he really helped me by answering this question that I asked.
[00:27:30]
And asking questions is a good way for me to relive stress and gain information, like the kind of information that Beth and Tom talked about.
When I was new to blood cancer, I said, “Doctor, now, if you were in my shoes, whom would you have treat your case?” And frankly he was shocked because he was at a leading cancer institute in my hometown here, in Cleveland Ohio, and he gave it real thought. And his compassionate answer blew me away. He said, “Jim, the professor who taught my blood cancer course at the medical school works in another hospital. Another leading cancer institute here in Cleveland. And if I were in your shoes, I would go to him.”
Now, what I did – and for 10 years, until he retired, that man helped us, my wife and I, emotionally and medically in more ways than I could ever describe.
An 8:00 phone call one night, and which we had never gotten from him, his name was Bob and of course, it’s a doctor, it’s an oncologist, I’ve got a deadly cancer, he’s calling at night. I’m thinking, “Oh, my god. The world’s coming down.” He really relieved our stress, he said, “Jim, those shoes you had on at your last appointment, may I ask you where you got those?”
So, like you said, Tom, each case is unique, and in our case, stress has been relived in some very unusual ways. I got in a car accident after my first of four stem-cell transplants, and my wife was having real problems with stress because now I was in remission and seemingly home free until it came back five years later, but she was really stressed out until I had a car accident where, not my fault, but somebody t-boned me and it really was a tough accident.
I was okay, but the car was wrecked. But when I called her to tell her that, she flipped out. And all this pent-up emotional stress she was going through came out, and it manifested in her yelling at me, how could I possibly have an accident after all we’ve been through? And the thing is, she caught herself, she listened to herself, and she realized, oh my gosh, what’s the point in getting yourself all in a knot over your incurable deadly cancer? You can get taken out by a car accident as any time. Things like that.
Beth Probert:
Absolutely. So, she really put it in perspective for you, didn’t she?
James Bond:
It really did. It really did. It just happened, it was coincidental that it happened, but it did. And so, we’ve used that.
Another thing that really helps us with stress is, and this is gonna blow some people away, but the longer we’ve survived with these two cancers, the more we’ve gotten asked to share our story around the country. And if fact, in two countries overseas.
And here’s the thing. We realized from the very first story telling we did in our home town, how much telling our story helped us emotionally. We looked at each other when the couple left our house and we realized, oh my gosh, just sharing our story and the roller coaster parts of it, not the technical parts, but just the emotional part, that really helped us. And so, we welcome other opportunities, and we encourage other survivors, whether it be short-term or long-term survivors, to consider the kind of things that the LLS has, and other organizations that get us out there, get people out there to share your story. It is very helpful for us. And that was a huge surprise to us.
Beth Probert:
Well, that is wonderful. And Michelle, I’d like to come back to you for a moment. Do you have resources that you can provide to caregivers and patients with AML, that if they do want to share their story, and is that part of what you do, as well?
Michelle Rajotte:
Yes. That is part of the Patty Robinson First Connection program. What it is, it’s trained patient volunteers and family members who’ve been through this, who then want to be able to reach back out and help others who are going through it now. So, that’s one of the things they can do. They can volunteer at their chapters, and there’s always a way to get involved that way. There’s things on our website where people can share their story. There’s lots of different things. On the LLS community, there’s a way for them to be able to post what they’ve been through. There’s blogs that we do. There’s tons of different things. And as far as the care giver, Jim, you bring up a good point, they are going through a lot of stress, as well. And they need just as much support.
And we do have a lot of good caregiver resources now. We have a caregiver workbook that we can send out that has everything you could possibly need as a caregiver to know. And it’s divided into sections, so it’s not overwhelming, but it’s a way to have a roadmap to try to figure out, okay, what do I do? Because just like the person who’s been diagnosed, the care giver gets thrown into this and doesn’t know, what do we do; where do we go; what questions do we ask? I don’t even know where to start.
And a lot of times that’s the question we get at the IRC is, “I’m calling you, but I don’t even know why I’m calling you because I don’t even know what I’m supposed to know.” So, it’s really helping people try to figure out, what is that next step? And that’s really all you have to focus on. If you try to look at the big picture, it can be really overwhelming. But if you can get to the next step, that’s something that’s doable.
Beth Probert:
Wow, that’s wonderful to know you folks do provide those resources. Thank you.
So, Dr. LeBlanc, I’d like to shift over to managing fear, anxiety, depression. So, you mentioned a few times that being diagnosed can be so overwhelming, and we can’t ignore that this could lead to anxiety and depression. What sort of things do you recommend to your patients to allay these fears, and to put into place in their life in dealing with this? It’s obvious that for most people it is going to lead to the anxiety and depression.
Dr. LeBlanc:
Yeah, this is such an important question, and it’s a really difficult one to address. Most of the time, I do recommend that people talk about it. And sometimes that’s the most difficult thing to do even though it sounds obvious, but it’s often the elephant in the room.
So, many times, the doctors and other clinicians seeing patients with AML and other cancers are just so incredibly busy and also fixated on all of the medical details, and the labs, and the scans, and other treatments, complications, doses of chemo, all of these things that we need to be focused on, of course, that we forget about the person, and the way that they’re struggling with these issues.
And it’s not that we don’t care or that we’re bad people or anything, it’s just that’s never the number one priority when you have to get all of the details straight to make sure the person gets the right treatment. I try to ask, but sometimes we don’t do this. So, for example, if there are other clinicians listening and wondering how to do this, one thing that I do is to just say, “This is really difficult to go through. How are you holding up? What do you look to for strength?”
And I will ask the person there with them. Usually patients aren’t there alone, and typically the person who’s with them is the person who’s really helping them keep it all together. Whether it be a spouse, a family member, a caregiver, a friend.
And I usually turn to them and also ask them, “How are you holding up? What are you seeing? What is the patient not telling me?” You know? What are they going through that they’re – sometimes people will put on a brave face for the doctor and they won’t tell me how much they’re suffering at home, and I really need to know so that I can help.
So, really the best recommendation is open and honest communication. And the other great one is to seek out resources like the ones we just heard about. I sometimes will encourage patients to seek out a family therapist, a psychologist, somebody who they could see in the cancer center, a social worker, someone who they can sit down with for an even longer period of time and just talk about how difficult this experience is. And just talking about it sometimes is really some of the best medicine, honestly.
Beth Probert:
Wow. Yeah, I love the tie in to with making sure that the caregiver is doing okay, as well.
Dr. LeBlanc:
Yes.
Beth Probert:
We often look at them as a pillar of strength and forget that they need those resources.
And one of the things that I personally feel is really really helpful, and I’ve heard from the AML community as well, is the mind, body, soul; exercising, meditation. And Michelle, I wanted to ask you, is that something that, when you talk about resources, that your department provides? Do you find that that’s a very often asked question, and/or it’s a topic that you like to recommend to patients?
Michelle Rajotte:
We get a lot of questions about, what can I do? How can I help myself get healthier, or stay well? Or how can I help myself get stronger, or what can I do? And I think a lot of it is, you feel very powerless when you’re diagnosed, and you really don’t have any control. So, if there’s something you can do to feel like you’re taking part in your care and making decisions about some things you want to do, that’s great. We always say, “Check with your doctor to see what’s okay; what’s safe for you to do right now depending on how you’re doing.”
But we have a lot of resources on nutrition, we have a nutritionist that can do a consult, either over the phone or online through email. We have a lot of different resources, and webcasts, and podcasts, and videos, and we have a ton of resources.
It can be a little overwhelming just to go on to the website and try to figure out, okay, what do I look at? Where do I go? So, I would encourage them to call the IRC. We can walk you through, depending on what it is that you’re looking for in the moment, where to find it. How to bookmark it, so you can find it later.
But again, I think it’s really important to discus it with your doctor to see – obviously if you wanna go for a walk, and you’re okay to do it, that’s great. But if there’s a chance that your platelets are very low, and if something can happen, then you gotta check with them about that too. So, we’ll get an idea of what they can do, but we always send them back to the doctor, make sure whatever they decide to do, whether it’s supplements, again, check with your doctor because they can interact.
But anything they want to do to help themselves get stronger or take care of themselves is always a positive.
Beth Probert:
Wonderful. And, Jim, I’d like to ask you to stay on this topic for a minute. Could you give any advice about support groups?
James Bond:
Yes.
Beth Probert:
Is that something that you found to be a great resource in dealing with this kind of anxiety and depression?
James Bond:
Yes, I think support groups are for people who want to go to a support group. Put yourself back 27 years ago when we first we introduced to blood cancer. There were not a lot of support groups available. And we started out with keeping it more to ourselves and our family, and then as we grew comfortable with living an managing the fear, the risk, the anxiety, our circle spread out. But it really was not until we got invited to share our story that our eyes were opened of the power of support groups. And we could see it happening.
One other thing that, Tom, I’d like to mention to you, one of the most effective way to manage fear for my wife and I was late one Sunday night lying in week number six, or something, in the last transplant for AML, and I’m on the ropes, I’m in tough shape. And the phone rings, and it was my myeloma doctor from Boston where we go twice a year, his name’s Paul Richardson, he’s an outstanding, compassionate doctor.
It was Paul, and Paul said, “Jim, I’ve just talked to your wife Kathleen at her home,” she had just left for the night. And he said, he said to her what he then said to me. He said, “Jim, I know you’re in a tough spot, but I want you to know, that we’ve got other patients here at Dana Farber, who have been through exactly what you’re going through, myeloma followed by AML, bad, bad prognosis.”
And he assured me that I could do it. And, Tom, what that doctor’s phone call meant to my wife and I could have been the difference between getting through this thing, and not getting through it. Giving up, and not giving up.
And we really believe it’s because our doctors have taken the time to help us build a relationship with them. Knowing how busy they are, and how many patients they have, we found the world of oncologists and the nurses and the others, very compassionate people. And it’s worth that time to build that relationship whether it’s your ongoing doctor, or one that you go out of town for a second opinion with, those relationships mean everything. And the doctors who are willing to take their time, when it’s not really on the clock and help their patients, they are doing tons and tons of good for the world that we live in.
So, we’ve got some other techniques, but those are the things that really stand out to me in terms of managing in this area.
Beth Probert:
That’s wonderful, Jim, and it circles right back to you, Dr. LeBlanc, when you introduced yourself and you told us that there is just more than coming to the doctor, and reading the chart, and giving the blood results. It’s definitely very impactful. And what you spoke about earlier about how you bring in the palliative care and the emotional care. And on that note, I know this is a little cross-over, but can certainly add to anxiety and depression on everything that we’ve talked about, Dr. LeBlanc, but do you encounter, through your care and conversations with clients, their anxiety over the financial part of care? Is that something that you hear often?
Dr. LeBlanc:
Absolutely. The idea of financial toxicity, sort of like other kinds of systemic toxicities you would have from chemotherapy, it’s just as real as a patient who gets neuropathy from their chemo. And in some cases, may be more crippling.
One of my colleagues here at Duke is a leading researcher in this area, and he’s taught me a lot about this, and unfortunately, I’ve seen it a lot in my clinic. And as we are fortunate to have a number of new therapies available for AML and other diseases like multiple myeloma, the unfortunate aspect of this issue is that many of them are pills, and may states do not have parity laws in place that require insurers to treat pills the same way as they do chemo therapy that you would get in an infusion suite.
North Carolina is unfortunately one of those, where I practice, where we still don’t have a law.
And that’s sometimes means I’m talking to a patient about an exciting new therapy, and then I find out that their monthly copay is going to be $3,000.00, and who can afford that? That’s just the copay amount for the patient just for one month of medication. This is, unfortunately, happening a lot. And thankfully, there are many resources that we can engage to help patients with these issues, but it is an increasing problem as medications are more sophisticated, they also have gotten much more expensive.
Beth Probert:
Yeah, and we hear this so often. And, of course, Michelle, I’m sure you’re hearing this, as well. And your department can direct people to the appropriate resources?
Michelle Rajotte:
Yes. It’s something we hear every day, unfortunately. Like Dr. LeBlanc was saying, we’ve got all these great new treatments now, but so many of them are oral, and a lot of patients, if they’re on Medicaid/Medicare especially, their copay is extremely high.
We do have copay assistance through LLS, we will also refer people onto other organizations that have assistance if we know of them. So, anywhere we can get people to get the help. We also do a lot of advocacy on that end, and we’re in Washington a lot and we’re sharing a lot of patient stories, and we’re trying to get the word out there that we shouldn’t have these barricades to treatment. We do all this research, we find all these wonderful treatments, and then people can’t have access to them. And that shouldn’t be.
So, that’s one of the things, along with the research and the patient assistance we have, we also focus on the advocacy part, and making sure that the oral parity bills are passed in hopefully every state. And that things are little bit more on an even plane, so people can use these wonderful treatments that are coming out.
Beth Probert:
Wonderful. And Michelle just hit on treatments, so Dr. LeBlanc; I would like to now go back to you.
And could you tell us, in regard to treatments, advances in clinical trails for AML, what’s happening in research and should patients be hopeful?
Dr. LeBlanc:
Yeah, it’s really a very tremendous time in cancer care and in biomedicine in general. As I mentioned earlier, we had, if I remember correctly, eight new drugs approved for AML in the last two years. And we had been mostly using the same treatment for patients for the prior 40 years. The seven plus three induction regiment was developed in the ’60s or early ’70s, and mostly that’s the same regiment or related ones to it that we’ve been giving to people when we give them high-dose therapies for this disease.
Other things have improved during that time, as well, that are really improving outcomes, so we have much better supportive care medicines. We have growth factor injections that work better. We have better antibiotics. We have anti-fungal medicines that work a lot better.
So, when you add those developments, even to the old chemotherapy, that had improved outcomes prior to this spirt of approvals in the last two years, but now, especially, we really are in a new ear of how we treat AML. And now, we need to actually molecularly and genetically profile each individual patient’s leukemia, so that we can best know how to treat their disease because at this point, we have several testable targets that we might then prescribe a medication to address in an individual person’s case of AML. So, it’s getting more complicated, at yet at the same time, there are many more options, and it really is a time to be very hopeful about how things are going.
Beth Probert:
That sounds so encouraging. And Michelle, going back to you. How can you lead clients and their care givers to these clinical trials that are on the horizon?
And can you talk a little bit about what that process looks like?
Michelle Rajotte:
Sure. If someone reaches out the IRC, we do have a group of nurses who do clinical trial searches specifically for blood cancers. And it’s not just, we’re gonna hand you a list as say, “Here, go talk to your doctor.” They will help through the process. So, they’ll really in-depth dig, and try to find trials that might be an option. Have you go back to your doctor, but then walk through it with you to help you get into that trial.
Because there’s so much research now, it’s wonderful, but it’s also really overwhelming if you try to do it by yourself. And a lot of them are more focused trials now, so you have to know what kind of mutations you have and that kind of thing. So, it’s a partnership where there’s a form that you would need to fill out for us to have that information, and then we help you walk through that process of, is there a trial that’s out there for you; is it something that’s appropriate for you, along with your doctor. And then, how do we help you make sure that you can get through the whole process.
Beth Probert:
Wonderful. What a fantastic resource. Thank you.
So, I would like to take a few questions that we’ve received, and, Jim, I’d like to hear your feedback on this one. And the viewer asked, “People keep asking me how I’m doing, and it just makes me worry more.” Do you have any advice, Jim, for people to tell those that love them and just want to help them that all these questions are causing anxiety, what would you suggest, Jim?
James Bond:
Yeah, a couple things that I’ve found useful. I explain to them I just got done with playing nine holes of golf, or I just got done exercising, and I’m quick turn it back and say, “How are you doing?” and try to get as much out of the other person, so that they understand that I’m comfortable in my skin, and I’m not stressing out or how things are going.
But it’s easy for people to understand that, hey, this guy’s got an incurable deadly blood cancer, or two, and we worry about him. So, I try to just loosen up, and turn it back on them, and hopefully they get more reassurance that, hey, the guy’s not stressing out, he’s okay. But you know, once you do all you can do, the rest of it is just fate, luck, whatever. So, that’s what we try to do.
Beth Probert:
I love that response. And people mean well, but putting the focus back on them is just fabulous. That’s really great, thank you, Jim.
James Bond:
Oh, you’re welcome.
Beth Probert:
And Dr. LeBlanc, we have a question from Shannon from Boston, and her questions is, “How can I manage the daily stress of like with AML? Are there proven strategies to cope with the stress?” So, we did talk about a few things earlier, but what advice would you give Shannon?
Dr. LeBlanc:
Yeah, I’m not aware of proven strategies specifically for AML, which is part of where we all struggle. Not knowing what to do and how to best support individual patients. And as I mentioned earlier, every individual is quite different. but I usually recommend meeting with a professional to talk about it. And some people are opposed to that and they don’t want to do that, but more people are at least open to the idea. And so, Shannon, if you’re somebody who’s open to that idea, I would actually encourage you to seek out a specialist in palliative medicine.
And many people misunderstand what that means. So, I want to just take a moment to explain why I would think that’d be helpful and what the evidence shows. So, clinicians who are trained in palliative medicine are basically experts on well-being.
They know how to address symptoms, they know how to help with quality of life maintenance, and they know how to help people cope with difficult diagnoses and serious illnesses like cancers. Regardless of the expected outcome. So, they can be helpful if we’re aiming at cure and we think there’s a really good chance of that, and they can be helpful in cases where we know that’s not gonna happen, and anywhere in between.
So, one of the misconceptions is that they can only be helpful when people are dying, but actually, what we found in a lot of research is that when you add a palliative care specialist to the cancer care team, even from the point of diagnosis, that patients feel better, and they do better, and even live longer. Several studies, now, have shown that in a recent medi-analysis that we publish, for example.
So, part of the mechanism by which palliative care specialists help patients feel better and live better is not only by addressing physical symptoms, but also at addressing these difficult emotional and existential kinds of issues.
Helping with coping. How do I get through the day; how do I live with the fear that this diagnosis instills in me; how do I enjoy life? Those kinds of questions are very common. And palliative care specialists are often very equipped at helping. Or even psychologists would be another great resource, where this is a person you’re going to see where the entire focus of the visit on those issues, so that they definitely don’t get pushed to the last 30 seconds of the visit when the doctor has their hand on the door knob and they’re trying to get out to the next patient.
Beth Probert:
Wow, and I love what you said that your study shows that people who do seek out the palliative care will live longer. And seeing a counsellor or psychologist too, both of those are just amazing suggestions. Thank you.
We have one last question from Doug from Boise, and, Michelle, I’m going to direct this question to you.
Doug says, he doesn’t know how to find a support group. So, where does he start? Could you give us some feedback?
Michelle Rajotte:
Sure. He can start by calling us. We can try to find out if there’s one locally for him. There’s also access to the online chat, which meets in the evening and he can talk with people that way. There’s a lot of different options. So, there’s the traditional support groups that you go to, but there’s other ways of getting support, as well. So, that’s a good way to start. It can be very overwhelming to try to find one. The other thing you can do is if you’re being treated at a hospital, talk with the hospital social worker because they’re usually pretty knowledgeable about what supports are in the area. But I would say those would be the two good places to start.
Beth Probert:
That’s wonderful. And Michelle, can you give us your specific phone number and email where people can reach you and your department?
Michelle Rajotte:
Sure. So, the number to the Information Resource Center, we’re available Monday through Friday, 9:00 a.m. to 9:00 p.m. is 1-800-955-4572. The other way to access us is through the website, which is LLS, short for Leukemia Lymphoma Society, much easier to type, .org. When you get on there, there’s a way to reach the information resource center either by email, by chat, or the phone number will be there, as well, if you need it. But that’s really the best way to reach us.
Beth Probert:
That’s wonderful. And we just got one last question, and we have enough time for it. And Jim, I’m wondering if you have some advice about this question. And it is, “My partner’s often struggling deeply with the diagnosis. I don’t know the right words to say to help him feel better.” Could you give some advice to this topic, Jim?
James Bond:
Yes. The weekend I was diagnosed, the very qualified oncologist rightly said in response to my question, “How long do you think I’ll live?” He said, “At most you’ll live three years.” And so, I struggled, my wife struggled, I was in my early 40’s, that weekend was hell. And here’s what got me out of my funk and got us back to problem solving and putting this thing on our agenda to do all we can. I looked back at my own life, here I am in my 40’s, two boys, I’ve been healthy most all my life. And I thought of, there was a real setback, medically I had, a bad injury playing sports when I was in high school, and to me as a high school kid, that was the end of my life. Sport was gone; a lot of recuperation.
And as I looked back on that with this cancer diagnosis, I said, “You know what, as tough as that was at the time, as devastating as that was, a lot of good things happened because of that setback.” Real things. Like it got me studying a lot more in college, I got a nice job as a result of it. Lots of good things happened. It caused me to overcome things, and I said to myself and my wife, “Hey, we’re gonna make this deadly cancer diagnosis the same thing.” And like all of us I think have been saying: every case is unique.
So, I don’t get bummed out when people give me their prognosis or whatever, or I read something that’s not good. My case is different than everybody else, and we can look at it that way. And in the end, this can happen to any of us. So, it got me off my back, it got us in there fighting, and that’s the way I look at it.
Beth Probert:
That is wonderful advice, and what I hear you saying is that, really, with your care partner, and your family, and I’ve heard this from Dr. LeBlanc and Michelle, as well, and, of course, Jim, that you’re a team. And finding that way to survive this as a team, so that’s great advice, Jim. Thank you.
James Bond:
You’re welcome.
Beth Probert:
So, I do want to thank the Patient Empowerment Network for this really impactful program today. I’d also like to thank The Leukemia and Lymphoma Society for partnering with us on this webinar. And I would like to thank our guests as we come to a close to this program. So, Dr. Thomas LeBlanc from the Duke caner institute, thank you so much for taking the time today and sharing the real benefits of the focus on the palliative care.
And Michelle Rajotte, from The Leukemia and Lymphoma Society. Your contribution has been wonderful, the resources that your department does provide. And Jim Bond, it’s just been so great hearing from you and your very long journey with AML, and what you’re dealing with, and how you have made the best life possible, and all of your dedication to advocacy. So, thank you so much for joining us today.
James Bond:
You’re Welcome.
Beth Probert:
And if our viewers have missed anything or just want to re-watch the webinar, a replay will be available in the coming weeks. Thank you for joining us, I’m Beth Probert, and I look forward with meeting with the AML community again. Thank you.
We thank Celgene Corporation, Daiichi Sankyo, Genentech, Helsinn, and Novartis for their support.
