Tag Archive for: fatigue

Making Lifestyle Changes When Living With an MPN

Making Lifestyle Changes When Living With an MPN from Patient Empowerment Network on Vimeo.

 As a myelofibrosis (MF) and essential thrombocythemia (ET) patient, Julia Olff has experienced lifestyle changes in her MPN journey. Watch as she shares changes she made with her work life and eating habits and the impact on her well-being as an MPN patient.

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Transcript:

Julia Olff:

I’ve definitely made many lifestyle changes since I’ve been diagnosed with ET and then myelofibrosis. The biggest change came when I needed to give up full-time work and began to work on a very part-time basis, so that’s been the most monumental change, and it really came about because of how unwell I was feeling, how much pain I was going through at the time, I also had a mini-stroke and became more involved in is hospitalized that I needed more treatment than I was seeing more…more specialists for a short period of time, and my husband and I recognized that to maintain my well-being, I needed to step off of the 50-hour week plus travel job that I was doing, so that was a really big change and that continues to influence my life, however, I’ve found a lot of positives in that I’m fortunate that I’ve been able to financially sustain my life while working part-time and find other aspects of my life that are fulfilling. For example, I volunteer a lot more. I’ve made changes in the way that I eat and the way that I sleep, so myelofibrosis has certainly caused a lot more fatigue over the years. And while when I was working full-time, I don’t think I was getting the amount of sleep that I really needed, and fatigue started to really weigh on me, and I remember driving and just feeling like, “Oh my God, I can’t do this,” so I make sure that I go to bed much earlier than I used to and try to wake up about the same time every day, and it’s also helped with some of the insomnia that I know people with myelofibrosis on the flip side, have with the fatigue. I’ve been hospitalized a few times for colitis, and there are all sorts of potential for bleeding with myelofibrosis, and we’re not sure that that was related, but I learned that I needed to change the way I was eating, and I can’t say that I did it immediately.

It took seeing a gastroenterologist, who evaluated all of my records and several more colonoscopies to get and the terrible, terrible pain of colitis to realize I needed to change the way I was eating, and I also had some weight gain with one of the medications that I was on…and so I enrolled in Weight Watchers, which I found to be incredibly helpful to help me lose some weight and did help me pump up the fruits and vegetables in my diet, especially when I learned you can eat lots of those…but less of other things. So those are some of the changes. And the last one I say is really learning to pace myself and to not overdo it, and that’s a longer learning process, I think, and figuring out that you don’t have the same kind of energy that you had pre-illness, where you can kind of push your day…you can do one more thing, one to one more place, add one more task to do is when you’re out, I’m much more of a planner, and I allow myself much more time to get things done, and I spread them out over several days, what I might have done in one day in the past.  

Balancing MPN Treatment Adherence and Mental Health

Balancing MPN Treatment Adherence and Mental Health from Patient Empowerment Network on Vimeo.

Balancing myeloproliferative neoplasm (MPN) treatment adherence along with symptoms can sometimes be a challenge. Watch was myelofibrosis patient Julia Olff explains how symptoms and executive functioning can impact continuation of MPN treatment routines.

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Transcript:

Julia Olff:

I think doctors and nurses underestimate how well patients can adhere to treatment and how that relates to one’s mental health. There are times where I have not felt as well and had a kind of foggy brain and had episodes of forgetting to take my twice-a-day treatment, so that’s sort of one type of treatment adherence that I think is just affected by your overall mental well-being, and then there’s the bigger part of it that is about seeing the full picture and all of the things that you have to do to continue with treatment so if it’s pills, for example, here, there’s a lot that one needs to do that I think we take for granted or assume everyone can do that, from remembering to refill your medications to going to actually physically go get them if you have to do that. Some are mail order, in the case of myelofibrosis. Knowing when to take them, figuring out when it may be better based on when they’re prescribed to take…when it may be better for you like with food. I know when I was taking ruxolitinib (Jakafi) that I would take it just as I was going to bed, but I would feel unwell for a while I was laying in bed, and I think it relates to your mental well-being because, over time, treatment also can affect…

Treatment has side…can have side effects, and those side effects can also influence how you’re feeling emotionally, how good you’re feeling as a person, they can affect your energy levels, so the illness can affect…fatigue is one of the number one when problems that people with myelofibrosis face, and then you add treatment to it, and there’s an impact on how well you feel overall, so I think treatment adherence is very much tied to your mental well-being, your outlook, and your ability also to…it’s called executive functioning, how well you can kind of organize your day and your life and they’re all intertwined, I believe.  

MPN Patient Shares Importance of Understanding Benefits of Professional Therapy

MPN Patient Shares Importance of Understanding Benefits of Professional Therapy from Patient Empowerment Network on Vimeo.

Myelofibrosis patient Julia Olff shares her experience with seeing a professional therapist via telemedicine as part of her MPN care.

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Transcript:

Julia Olff:

When I was diagnosed with myelofibrosis, I learned how important it was to continue therapy, so I had already started to see a therapist several years before that for a set of long-term issues in my life. But what I found over time, and I continue to find is the therapy has really helped me cope with not just some of the parts of my personal life that I’m still working through, but really helps me having a chronic illness, and I know from attending patient conferences, reading about myelofibrosis that there is…for one, a significant population of folks who suffer from anxiety with myelofibrosis. And that’s true for other blood cancers and chronic cancers, where there’s this, that there are ups and downs where you’re going through a period of stressful treatments, possibly followed by periods of monitoring or less treatment, and there’s always that fear of or worry about what may happen next, when might I develop a more serious mutation that will affect my prognosis, could I progress any time? Or there’s a smaller percentage of folks with myelofibrosis who can develop acute myelogenous leukemia, that’s always there. And I think therapy really helps for those sorts of outlook, long-term mindfulness, living in the present and gaining perspective about some of those fears. And I think the other part of therapy that’s so beneficial as it relates to having myelofibrosis is kind of learning to cope on a day-to-day basis, learning to think about yourself and your self-esteem that can get lost when you are feeling unwell for long periods of time. I’ve had months where I was deeply fatigued in terrible pain and doing a lot less and having to say no to my kids, I can’t do that, I can’t go here.

I remember going to back-to-school nights for my kids when they’re in high school, and I’m moving so slowly that I’m getting a teacher asking me, “Are you okay, do you need help?” And that can affect your sense of self, especially as you give up activities or work. I’ve reduced my workload significantly, and all to say is there is this dynamic of who you are as a person, that therapy I’ve found can help me get through so that I don’t lose who I am that helps really sustain my mental outlook.

MPN Patient Q&A: What Lifestyle Changes Did You Make?

MPN Patient Q&A: What Lifestyle Changes Did You Make? from Patient Empowerment Network on Vimeo.

Should myeloproliferative neoplasm (MPN) patients make lifestyle changes after diagnosis? Watch as MPN patient Nona explains lifestyle changes she made following diagnosis to improve her quality of life.  

This program provides one patient’s perspective. Please talk to your own doctor to make healthcare decisions that are right for you. 

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Transcript:

Dr. Nicole Rochester:

All right, we have a question from James. James says, “Are there specific lifestyle changes that you may, following your diagnosis that brought relief to any symptoms that you were having?”

Nona Baker:

Well, the first change I had to me was I used to smoke, and then my hematologist said to me that affects the red cell count, and that was the incentive to absolutely give up smoking there, and then that was my first lifestyle change, and I haven’t regretted it for a single day. Other lifestyle changes, not really, other than just becoming aware that you know to fight fatigue doesn’t help, sometimes you have to surrender to it, but definitely give up smoking and I… you know, I think that…well, nowadays people don’t smoke, but we’re talking 30 years ago, so…yeah, study is pretty well since I have a cigarette.  

My MPN Journey, Getting the Best Care After ET and MF Diagnoses

My MPN Journey, Getting the Best Care After ET and MF Diagnoses from Patient Empowerment Network on Vimeo.

Myelofibrosis and essential thrombocythemia (ET) patient Julia had experience as a health educator and hospital administrator before receiving her MPN diagnosis. Watch as she shares how she later connected the dots from her symptoms and blood work, lessons learned about myelofibrosis patient journeys, and her advice for living well with MPNs.

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Transcript:

Julia:

My name is Julia, I was diagnosed with essential thrombocythemia in 2007, and then with myelofibrosis a year later, after routine blood work. The diagnosis came out of nowhere. I was healthy and active prior to my diagnosis and raising five children with my husband. I’ll never forget the day I received a voicemail from my primary care doctor’s office, I really couldn’t believe what I was hearing. I didn’t have time for this illness in my life. I had a bone marrow biopsy that showed I was positive for JAK2 and had a 5q deletion genetic mutation. I started on daily aspirin, and it was a hard pill to swallow for many reasons.

As a certified health educator and former hospital administrator, I understood the importance of treating a rare disease, but I had a difficult time with the idea of taking medicine daily, and I felt like I didn’t have any symptoms. I reviewed my old lab print-outs that showed elevated platelets 15 years before, that slowly increased over time. I recall having severe migraines that would put me out of commission for the day, and tenacious fatigue in the years before, I didn’t connect the dots with the symptoms, and neither did my oncologist. By 2007, my platelets and white blood cells were very high.

I decided to find an expert with extensive experience with ET and MF to get top-notch monitoring and treatment. I connected with a specialist for many years and hope to keep living with my disease for many years ahead. I’ve had several hospitalizations and ER visits over the years, but keep on going. MF has absolutely changed the path of my life and how I live it, but I still do most of what I want to do while I’ve been lucky in maintaining stable myelofibrosis with no true signs of disease progression or serious myelofibrosis complications, it’s important to understand the path for other myelofibrosis patients might be quite different.

My advice for others MPN patients is:

  • Pay attention to how you feel and pace yourself.
  • Keep track of your blood counts, so you can alert your care team.
  • Find an MPN specialist for your care.
  • Don’t forget to be present and spend time with your family.

These actions are key to staying on your path to empowerment

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Chronic Lymphocytic Leukemia: Adrian’s Clinical Trial Profile 

Chronic Lymphocytic Leukemia: Adrian’s Clinical Trial Profile from Patient Empowerment Network on Vimeo

Chronic lymphocytic leukemia (CLL) patient Adrian’s diagnosis came as a shock when he’d been feeling healthy. Watch as he shares about his unique patient journey – as a former physician and past experience supporting clinical trials –  about the value clinical trials can provide in making treatment decisions and access to treatments for improved patient outcomes. 

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Transcript:

Adrian: 

Hi, I’m Adrian., I’m 50 years old. And in 2017, When I was 46, I was diagnosed with chronic lymphocytic leukemia (CLL). It happened as a bit of a shock to me, actually. I’ve been quite healthy quite well earlier that week, I’d gone walking in the mountains in Switzerland, but I collapsed one day on the way home from work, and was diagnosed with pneumonia. And during that illness, they realized that my immune system wasn’t working too well, and then my lymphocyte count was high, and I was diagnosed with CLL. I was put on watch and wait, which for some people can last a decade or more, but for me, it only lasted 15 months. 

As a doctor, I obviously know a fair bit about the clinical research, and so I did a bit of research on my own. It was going to be difficult for me to get one of the selective treatments outside of a trial. So I wasn’t really sure what to do, and I became quite pressured and quite stressed about how to make this decision, and it might sound odd, but it felt like a bit of a relief almost to allow a computer to make the choice for me. Obviously, it’s a bit weird getting to the point where you realize, actually, a doctor doesn’t know what’s best for you, you don’t know what’s best for you, and your research doesn’t give you a clear answer, but to me that’s the ideal time for a trial because then you don’t know if you know what’s best for you, then you probably ought to go down that road, but if you’re uncertain and you think, well, any of these three treatments that were on offer to me through the trial would be good, they all work, they went to slightly different side effect profiles, and it was hard to know which would work best for me as an individual.  

So, I quite like the idea that in a way, as an individual, one of these treatments would be better for me, and it might not be the same one that would be better for another patient, and so even with the data, we wouldn’t know for sure which of the best treatment was for me. Well, at least this way, it’s a computer making the decision randomly for me, so I’ve got an equal chance of getting whatever is the right treatment for me. But the other major thing, of course, to me was the idea or giving something back, and I guess this is where my professional background did make the difference, because I’d spent more than a decade working in clinical research myself and encouraging other doctors and helping other doctors who are running these trials and helping to supervise them, helping to run the trials and design the trials, and so I figured that as I obviously benefited in the community, benefited from so many other people who had gone before and put themselves forward for these trials, so there was a altruistic part of me that wanted to give back.  

None of these drugs would be available to us now if other people hadn’t taken the risks, if you like, and taken on board these clinical treatments and sometimes actually by taking on a treatment a bit earlier than you might otherwise have been able to get it. You might actually gain a benefit, and I’ve certainly got friends who took treatments that are now considered old school, but when they took them, say 20 years ago, they were very much new school, and if they have to take and then they would probably have died.  

The treatment itself worked really well, and I was actually randomized to the old-fashioned treatment. It’s well known what the side effects are and what you’re dealing with. I did get quite unwell at the beginning and I probably would have that happened no matter what treatment I had. You kind of get used to being in the hospital, and they know what to do, and they know how to look after you. And so at the end of the treatment cycle, I got to the point where my cancer was completely in remission, to the point that they weren’t able to detect any cells using the tests that they have. And the doctors told me that there’s almost certainly some cancer cells left there, and it will at some point come back in my case, although sometimes, even with these blood counts, they can get rid of it all together.  

So I’m left with that uncertainty of knowing when is it going to come back? But for me personally, I’m also been left with quite a bit of damage to the immune system, so I do deal with infections. I do try and make the best of how I am today. I have some limitations, I’m not able to work. I’m stronger than I was at my weakest point, and I know for a lot of people, they get a lot better than I have many people bounced straight back and are able to work, or even able to work all the way through treatment. I’m very glad I had the trial though, I feel like my information may help to help people decide which treatments to use in the future, and I’d definitely go for another trial if I was offered it again.  

I know we don’t like to have unnecessary tests, but it just means that you feel like you’ve been looked after well and assessed well, and they should explain to you in great detail what the options are, and I think it’s very important if you’re considering a trial to think very carefully about the options that are being given to you. It’s really important to make sure you understand what all the options are that you are being offered and then you’re happy to take any of them, and you understand the benefits and risks of each of them, and why it is that your doctor feels that these treatments are suitable for you, if there’s one treatment that you feel very strongly about that you really want to have or that you think is definitely best for you, you’re probably better off trying to get that treatment outside of the trial, because it takes a certain mindset to be willing to allow a computer to decide for you, and sometimes you not to even know what treatment you’re on. 

I knew what treatment I was on, sometimes you won’t know, and some people find it quite difficult to deal with and so if I was you, I’d leave it to the people who feel more comfortable, but the only way you’ll know really is by looking into it. And so, I think going for that screening appointment, understanding, having all your questions answered, making sure you know what’s involved and whether there are going to be any additional visits, whether that’s going to be a problem for you. And what that all looks like so that you know what you’re getting yourself into because you might have to come to more visits and spend longer at the hospital and such like, but at the same time as a reward involved because you feel like you’re being well looked after and you’ve usually got a phone number of a nurse or research or that you can ring any time with any of your questions, and so that’s a definite bonus.  

So, for me, a clinical trial is an opportunity for you as an individual to get a treatment that may well not be available to you outside of the trial, and so that can be a benefit to you and also gives you the opportunity to have extra care potentially. But also, it’s an opportunity for us to give back, and I think for society as a whole, it’s really important that patients are willing to volunteer so that we can get new medicines. Because without clinical trials we’ll never get new medicines we’ll just be stuck with the old ones, and when you look at blood cancer as a whole, it wasn’t that many years ago where there really weren’t very many treatments at all, where you know it was chemotherapy or nothing, and thanks to the sacrifices of many patients who’ve gone before, we’ve now got a wealth of treatment and more coming down all the time, and therefore an improved quality of life hopefully, but certainly also an improved quantity of life. So yes, trials can actually save lives down the way down the line, even if it’s not right, and they can certainly save later lives, and sometimes they might give you a treatment that would work for you that wouldn’t be available for you otherwise. 

Chronic Lymphocytic Leukemia: Deirdre’s Clinical Trial Profile 

Chronic Lymphocytic Leukemia: Deirdre’s Clinical Trial Profile from Patient Empowerment Network on Vimeo.

Chronic lymphocytic leukemia (CLL) patient Deirdre experienced a different diagnosis and treatment path as a female CLL patient diagnosed at age 35. Watch as she shares about her patient journey, the value of clinical trials, her advice to other patients, and things she wishes she had approached differently in her CLL care. 

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Transcript:

Deirdre:

My name is DeirdreI was diagnosed with chronic lymphocytic leukemia (CLL) at the age of 35 in 2018, and I’ve been on the medical trial in UK for the past, coming up to two-and-a-half years. I apparently had CLL for quite a number of years before I was diagnosed. It came up in through different ways, through being fatigued even after having lots of sleep, I’d feel very tired.  I used to feel quite unfit. I’d get different injuries. A few of them I had to get looked at through X-rays and nothing was found, and I’d sometimes while doing arm exercises my arms felt kind of hollow and lots of different bruises which came up very easily and took ages to heal. Lots of different colds, infections and blues, which would take a lot longer than a normal person, and I just generally was feeling quite run down for a really long time. CLL wasn’t even something I’d even heard of before I was diagnosed.  

Someone my age, a female, under the age of 40 was incredibly rare to have CLL. And it wasn’t until I actually had kind of a random blood that it was brought up that I had quite a high lymphocyte count. There was no real, real concern just that you should get this checked out, so it was a few months until I could see a consultant. And he said, for my age “It’s probably nothing because you’re under 40.” I had at the back of my head, my lymph node was quite enlarged, which I had actually mentioned before to my GP. I hadn’t felt very well at the time, so he just said, “Oh, it’s probably just your lymphocytes are up, and lymph nodes are nothing to be concerned about.” But, my consultant, she said, “this is a bit concerning, and you could have CLL.” And then I started with researching CLL, and I realized that all of the bullet points online were things that I’d been going through around my mid-20s to my mid-30s, so I’d had these kind of vague symptoms that all started making sense. So, when I was actually diagnosed, my oncologist, he was kind of relieved really. And I said,” Don’t worry. I know I’ve got CLL, and that’s what it was.”  

So, I was diagnosed with CLL, and my oncologist said that I had accelerated CLL, which meant that I actually had to forego watch and wait. My CLL had gotten to a point where I couldn’t do that. I had to start treatment ASAP. So, I had to have a few different tests, different scans, so I could start treatment. My particular biomarkers, I was researching myself, looking at different treatments that I felt would be best for me, and I came across the FLAIR trial. I was speaking to my oncologist about how could I possibly take part in the FLAIR trial in the UK and he said have to have quite a few different tests just to see if I was a suitable candidate. I was found to be a suitable candidate for the FLAIR trial, and I was slightly hesitant, because I read that I would have to have more observation.  

I actually quite liked having my CLL looked at more, so I was quite positive about starting the trial and so I got into the FLAIR trial. I was fortunate enough to be randomized into trying the two drugs that I particularly wanted that I thought would be best for me. So far, I’ve been very, very fortunate. One thing that I’ve learned through having CLL is that everyone’s CLL is slightly different. So with my particular biomarkers, I felt that the drugs that I was randomized on would be working for me, it depends on your situation, which drug would be best for you. I was very fortunate that I got on the trial, and I’m very, very happy that I’m on the trial.  

I would say to people who are considering starting a trial to really speak to your oncologists, speak to your doctors. 

If you can go online, there are particular CLL forums online, you can speak to quite a few other people who are on trials and ask them questions. Again, everybody’s CLL is different, so just because one drug worked for someone doesn’t necessarily mean that the drug would work in the same way for you. But, I really would recommend the trial, the care that I had from my nurses and doctors and oncologists had been amazing. I do think I’ve had such fantastic care.  I do have to have maybe a few more tests to be more scans than usual, a few more biopsies, but I would have to have some anyway, and they’re actually not that bad. I think a lot of these things, I would read about them online perhaps, and sometimes they seem worse than they actually are. You imagine, them to be worse than they really are.  I would really recommend, getting on to a medical trial if it’s available to you, and if you can get on the trial.  

If I could go back to my pre-diagnosed self, I absolutely definitely would have said, pay more attention to how you feel your body and speak to your doctor about it, but don’t just rely on one doctor. Do keep an eye on these things, which is over many years, all these small things like knots and fatigue and bruising and everything that they all seem like it’s not connected.  I wish I could go back and get checked out properly even if I maybe had to go private healthcare to get myself checked out, because deep down I knew there was something not right. And I wish I’d been a bit more confident in getting the observation that I needed to have a full blood count and have everything looked at. I wish I could go back and maybe get a second opinion. 

My medical trial in total is going to be six years, and I’m very fortunate, I started actually before COVID- 19, so all the times they had to go into hospital were beforehand. I’m still on the same drugs now and I’m doing really, really good. I think everyone needs to decide for themselves and think, you know what’s best for me is a medical trial best for me or just having normal treatment, if it’s best for them. Everybody’s CLL is different, but the medical trial has been fantastic for me, and I would really recommend it to anyone who is suitable for trial.  

NCCN Guidance on Safety and Effectiveness of COVID-19 Vaccines for Cancer Patients

NCCN Guidance on Safety and Effectiveness of COVID-19 Vaccines for Cancer Patients from Patient Empowerment Network on Vimeo.

Is the COVID-19 vaccine recommended for people living with cancer? Dr. Erin Roesch shares recommendations from the National Comprehensive Cancer Network (NCCN) for those undergoing cancer treatment, including guidance on mask wearing and advice for family members.

Dr. Erin Roesch is a breast medical oncologist at the Cleveland Clinic. Learn more about Dr. Roesch here.


Transcript:

Katherine: 

Many cancer patients have questions about the COVID vaccine. Is it safe? Do we need to continue wearing masks? Here to address these questions is cancer expert, Dr. Erin Roesch. Dr. Roesch, would you introduce yourself?

Dr. Roesch: 

Hello. And thank you for inviting me to participate in this very important conversation. My name is Erin Roesch. I am a breast medical oncologist at Cleveland Clinic.

Katherine: 

Excellent. Thank you so much for joining us today. I’d like to run through a list of concerns that cancer patients have about vaccines in general and the COVID vaccine specifically.

So, let’s start with a basic question. Should people get vaccinated if they have cancer?

Dr. Roesch: 

Yes. All individuals diagnosed with cancer should get the COVID-19 vaccine as recommended by the National Comprehensive Cancer Network or NCCN.

An immunocompromised state makes many people with cancer at higher risk of serious COVID-19 illness. Those who are vaccinated are less likely to become sick with COVID-19. And, also, vaccinated people who do get COVID-19 are much less likely to become seriously ill.

I would also mention that those living in the same household as a person diagnosed with cancer and caregivers or other close contacts should also get vaccinated.

Katherine: 

Another common question is whether people with cancer should wait for any reason to get the COVID-19 vaccine.

Dr. Roesch: 

Most people with cancer should get the vaccine as soon as they can with a few exceptions according to NCCN.

People in the process of receiving stem cell transplant or cellular therapy should wait at least three months after they finish treatment to get vaccinated.

Those diagnosed with certain forms of leukemia should also wait a few weeks after receiving treatment to allow their immune system to recover so the vaccine can be effective.

It’s not been clearly defined exactly how chemotherapy affects responses to COVID-19 vaccines. But some data suggests that immune responses may not be as robust. However, it is still recommended that those receiving chemotherapy and also immunotherapy and radiation should get vaccinated whenever they can.

Katherine:

I think a lot of people are concerned too about whether one vaccine is better than another. What would you say to them?

Dr. Roesch:

And that is a common question that I often get in my clinic. And I advise my patients to receive or take whatever vaccine they are offered.

We don’t really have any studies or data at this point suggesting one being better than another in cancer patients.

Katherine: 

Some people are wondering if the vaccine can give a person COVID-19. How would you address that?

Dr. Roesch: 

I would say that as none of the currently available vaccines are made with a live virus, the vaccine itself can’t give a person COVID-19. By getting vaccinated, actually, those who are immunocompromised are really helping society to prevent the spread of COVID-19. Immunocompromised people who get COVID-19 may be more likely to infect others due to prolonged shedding of the virus after infection.

Katherine:

What about side effects? Are the vaccine’s side effects worse for people with cancer?

Dr. Roesch:  

No. Side effects do not appear to be worse for those diagnosed with cancer. Results to date suggest that the vaccine’s side effects in people with and without cancer are really no different.

These side effects, as we have seen, may include arm soreness, rash, fatigue, chills, fever, headache, for example.

Katherine: 

And, finally, can cancer patients stop wearing a mask after they’ve been vaccinated?

Dr. Roesch:

Cancer patients should continue to wear a mask post-vaccination. Many people with cancer may have a harder time actually fighting infections and may not respond as well to vaccines. So, people diagnosed with cancer and their close contacts should get vaccinated and then continue to follow precautions, which include wearing masks, social distancing, hand hygiene.

Katherine:

Is there a certain length of time that people need to continue wearing a mask after being vaccinated?

Dr. Roesch:  

At this time, I would recommend patients continue to follow the CDC guidelines that are currently in place. And at this point, I don’t think we have a projected end time for that yet.

Katherine:    

Is there anything else you’d like to share with cancer patients who may be concerned about vaccinations?

Dr. Roesch:    

I would encourage those diagnosed with cancer to not only themselves get vaccinated but to also really voice and stress the importance of vaccination to those that surround them, including, again, members of their household, close contacts, and even beyond their inner circle.

I would also advise people to try and avoid letting the concern of possible side effects related to the shot deter them from getting it. The symptoms of COVID-19 can be much worse and potentially serious for some compared with the relatively minor side effects that we’ve seen with the vaccine itself.

I also would mention I’ve had personal patients that have expressed concern about functioning of their immune system while receiving chemotherapy and how this might affect their response to the vaccine. I do emphasize to them that even though responses might not be as strong as they may be in the absence of active treatment, I feel like the potential benefits of the vaccine still outweigh the risks in my mind.

Katherine:   

Thanks so much for joining us today, Dr. Roesch.

Dr. Roesch:

Thank you for having me.

Chronic Lymphocytic Leukemia: Shirley’s Clinical Trial Profile

Chronic Lymphocytic Leukemia: Shirley’s Clinical Trial Profile from Patient Empowerment Network on Vimeo

Chronic lymphocytic leukemia (CLL) patient Shirley felt she had a different experience not fitting the typical CLL patient demographic. Watch as she shares about her journey as a BIPOC patient, the value of clinical trials, and her advice to other patients for ensuring optimal outcomes.

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Transcript:

Shirley:

In my late 30s, I started feeling extremely fatigued, and I went to my GYN. She ran a couple of tests, and she has sent me over to a hematologist because she just determined that it was something that she was not knowledgeable about. Then I had a physician contact me after several blood tests, and they had told me that it was a form of cancer, and it was leukemia, and it was called CLL, which is chronic lymphocytic leukemia.

When I heard the word chronic, I immediately thought, “Oh my God, this means like death instantly.” But they had told me that, “No, it was aggressive, but it’s definitely slow-moving,” and I have a great chance of fighting it. I was concerned because I did not feel like I wanted to be a lab rat, because I was told that I did not fit the demographics for having CLL. Most of the individuals were male of Caucasian descent, and they were much, much older than I was possibly in the late 60 to 70s, so I got a lot of stares and it made me feel very uncomfortable. So, I just didn’t want to feel like they were just like, “Okay, this is a different case. We can make a name for.” I wanted to make sure I was getting the best treatment.

I didn’t tell too many people in the beginning because I really didn’t know what was going on, but a lot of people was able to tell because no matter how much the time of sleep I got…I was always tired. The fatigue is just overwhelming. I decided to just remain optimistic about my future, because I know whenever you’re trying to battle any kind of ailment your attitude means a lot, you have to really put it out there into existence that you’re going to get better and you believe it, you have to really believe it in order to put that energy into finding out about the treatments and so forth. My doctors, they gave me a booklet that was maybe about it, and they said to me, “Take this home, study hematology and learn about your disease, how we’re going to be trying to treat it, and you know what you’re going to be feeling and you need to tell us everything if your nose itches, your eyes burn. We need to know everything that happens.”

And I was just not a complaining type of person, so there were plenty of times where I was experiencing like pain on my side and I was just like, “Oh, it’s probably just gas from the medication,” and then later found out that the medication they were giving me was enlarging my spleen, so it was pushing against my stomach, which was causing me an enormous amount of discomfort. So the doctors had to then give me other types of medication to help treat that issue that I was having, so it was definitely a long journey. This was an unusual diagnosis for someone of my heritage. The doctors explained to me that there was no blueprint for my treatment, this was, they were going to be trying things, they had a team of individuals, maybe it was like 10 or 15 of them, and they’re actually studying my case on this big screen in this room.

So it was constant medication, it was constant them trying, running the blood test, you were always, always getting blood tests, they were always giving you observations. Someone was always in your room, at least every two hours, checking to see what was going on. I just remember some time sitting in the hospital was just feeling very overwhelmed and definitely feeling isolated alone. I remember one time I was in so much pain, like my bones were hurting me so bad that I literally was just losing my mind in the bed. So they gave me some morphine, which I’ve never taken before in my life, and I wind up throwing up the chemo medication that they gave me. it was just so bad. So, the nurses and I were really overwhelmed at that point. I remember contacting family members and telling them, “I need to get out of here, I feel like they’re just trying whatever they want to try on me, and I don’t think it’s working. I don’t feel this is the place for me, like I need to really get out of here.”

So my doctor who was actually giving a seminar in Switzerland was just like…he was really amazing. He said to me, he said, “You are my prize patient. I am working every day really hard trying to get you back to being your 100 percent yourself,” He said, “You’re always like a light of sunshine.” The women that he worked with are always looking in the patient portal, and they’re like, “Shirley is coming in,” like, “Oh my gosh, she’s coming today.” And they’re excited because I always maintained a great attitude, and I always came in there dressed up.

So my doctor also recommended it when my treatment, a hospital stay was over for me to practice on taking out walks and exercising, yoga was very good meditation, they told me to get all these apps on my phone and therapeutic massages, those have been like a savior for me. I think having a good support system around you is extremely important, people who understand. Never be afraid to tell people what exactly you are experiencing. The mental fatigue that you go through is really unpredictable, and it’s off because that was not something that they, that no one prepared you for. So my doctor and his colleagues, they were just one of the greatest teams that I have experienced, them being very transparent about what was going on with me, even when I was at one time being very stubborn, I got so upset that I pulled the IV out of my arm and I was like, “You know what, I’m not doing this, I’m tired. I’ve got to get out of this hospital. I can’t stay here.”

I mean, people were just so sick, and this is not me. And they had to assure me, “It is you. You are sick, and you do have a blood cancer, and the sooner you come to terms with that, the more calm you’re going to be in being susceptible to accepting treatment. We’re here to help you, but we need you to tell us if something is not working, you don’t feel good on what’s going on in your body, we need to know.” The blood tests don’t lie, they tell them exactly what’s happening, the doctors know if the treatment is working, they monitor the CLL extremely closely. They were way more advanced at honing in on the type of treatment that I needed, so I was really assured that you’re in the right hands, and after when I started feeling a little bit better, then my trust totally opened up in staff, because I saw that they were excited about my treatment working. They were giving me the three combinations of chemo, and they were like, “This combination is working for you now.”

They started a new trial which was bringing in venetoclax (Venclexta) along with the rituximab (Rituxan), and that is what really started sending me on a better path, getting better. And then once I came off of the rituximab, which was an IV-infused chemo treatment, they decided to just keep me on the pill form of venetoclax, I was able to go into the office, which I was ecstatic about.

Advice I like to give to patients who are considering a clinical trial is definitely ask a lot of questions. Don’t be afraid, don’t be shy or hesitant and don’t feel like you feel like you’re ignorant. And always address it with a positive attitude. Keep in mind that they are there for your best interests and trying to get your health back to normalcy. Just know that you’re not in it alone. And always find someone that you can always have a conversation with if you don’t feel comfortable. Never be afraid to ask questions and just even if you do look different as opposed to everyone else that… and just get that everyone else that is sick. Don’t feel like you’re in it alone, regardless of how you look for what your demographic background is, just know that the team that’s there that’s in place is always fighting for you, and you can always say no or get a second opinion. That’s very important to know that you have options.

So, never feel afraid to ask about the clinical trials and do your research, it’s important. It’s inspiring to see people on the leukemia organization website that are exercising, they go for runs right after they receive treatment, that inspired me to say, I’m going to out and take the dog out for a walk or go out for a run and help myself get better,” and it works. It works, it really does.

Chronic Lymphocytic Leukemia: Fran’s Clinical Trial Profile

Chronic Lymphocytic Leukemia: Fran’s Clinical Trial Profile from Patient Empowerment Network on Vimeo.

Chronic lymphocytic leukemia (CLL) patient Fran was diagnosed over 20 years ago and has traveled long distances for care. Watch as she shares her CLL journey and the benefits that she’s experienced from seeking out CLL specialists and clinical trials.

“I just think that clinical trials play such an important role in the future…we’ve come such a distance in my 20 years that we would have never come had we not had people that came before me in clinical trials.”

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Transcript:

Fran:

Hi, my name is Fran, and I am 80 years young, just celebrated my birthday. And I have had CLL for 22 years. So, I developed CLL while I was still working as a nurse and as a diabetic specialist within a hospital setting. I was diagnosed as many are, by a simple blood test, having no symptoms. It was really done as part of my military requirement.

And I continued to work and continue my military career. I was a single parent, I am/was a single parent at that time, and I was raising three girls, so I had a busy life, and this was just a sideline as far as my health was concerned. I was in good health, but as the years went on, after two-and-a-half years, my count started to rise again, no symptoms. And the local oncologist that I was seeing decided that it was time for me to begin my first treatment, which was a very simple treatment again, as far as I was concerned, because it was an oral medication that I had no side effects whatsoever from, and it was easy to take once a day, and I did get some improvement in my blood work, of course. It did not put me in remission, but it brought down my numbers a little bit, and I was able to go sort of morally along for another two years when then it became evident again, not because of how I felt, but because of my numbers that I needed additional treatment. This treatment was a little bit more complicated because it was FCR, and that’s chemotherapy intravenous.

But I did say myself, “You need to start paying more attention to this disease,” and I went…I did go for a consultation at a university, about two hours from my home, and the physician was pretty direct with me and saying, “You need to start to pay more attention, get more information, have more testing done regarding the type of CLL you have,” at that point, it was the first time I had heard mutated, unmutated, which I know sounds probably a little crazy with my medical background. But again, I was able to put it in the rear-view mirror, the disease because I felt so well, and/or maybe it was denial.

I was able to come out of retirement and start to teach nursing part-time and work some other jobs. I got married. Life was good, I mean it was even better than good, and my pattern has been that I would get the treatment, get my CLL under control for about three to three-and-a-half years, that was about the time that I started, the numbers started to increase. And so my local oncologist here in Maryland said, “Well, we really need to be looking for something different,” and it was at that time when iguratimod (IGU) had just come out of clinical trials and been approved, so I was in this area, at least one of the first people in their practice to go on iguratimod.

Even though it’s not comfortable geographically, but to begin to look for a specialist and…so three years into iguratimod, I did that. I went to a university hospital setting, about three hours from my home and had way more thorough work-up, but more a work-up that included more tests that were able to give a clearer picture of my CLL, where it was at that point. And this group of doctors at this university setting said, Well, you were on track to maybe another year, and iguratimod to the end of the line as far as treatment for you, and you probably need to be looking at perhaps venetoclax (Venclexta) as your next option.

And I discussed actually with one of the local oncologists about going to see a specialist, and he encouraged me, he did not discourage me, he said, “We’d like to continue, we can play a role here, but we understand where you’re coming from.”

I am so glad that I made the decision, I did, because there is no doubt that this decision at the end of the iguratimod journey for me. I was going to be faced with another crossroads of where do I go from here as far as treatment, and I am quite sure had I not made the decision to go to a research university setting with a specialist that really is heavy into research.

I’m not sure that I would have…I would have ended up on a clinical trial, I’m not sure…I could have navigated all that myself, even with my medical background. Sure, enough the iguratimod did come to an end. And as I did, I was truly, really ready for venetoclax and a physician specialist, CLL specialist that had been at the university setting that I went to, as I mentioned, for my care, he had left that university and moved on a little further away from where I live, I contacted him just for an opinion, and he said, “Well, why don’t you come to see me?” I was in Florida at the time, and so I said, “Okay,” I would. And I did. And he broached the clinical trial.

The benefits definitely outweigh the risks for me. I didn’t realize that I was one of the first 10 or 12 people to take this drug, but I don’t think it would have made any difference because I knew that I had faith, first of all, in my physician and his knowledge, I had faith in the drug as they explained it to me, it was a new way of addressing mutations, and I just felt that this was a good pathway to be on, and that the risks, I felt would be handled by my physician and I would be watching for them, so…I do feel in my case, it was definitely worth the risk. I would say though, that people should really think and read and get as much information as they can about the specific trial that they’re considering, but know that there are just some questions, especially early on, that can’t be answered because they don’t know the answers.

I believe wholeheartedly in trials, and I would say that you have to deal with the, I think the emotion and the fear, the trepidation, this is something new, and try to work through that and concentrate on the positive. I just think that clinical trials play just such an important role in the future that you know of all of medicine, but particularly CLL we’ve come such a distance in my 20 years that we would have never come had we not had people that came before me, in clinical trials. On the other hand, I think you really do need to think about not only the immediacy, but the intermediate and the long range. What do I do if this happens or that happens? That I have to think of this.

This is part of my life now. This is something I have to commit to.

So it’s given me years with my family, with my girls, with my grandchildren, I’m getting to see kids off to college, into high school, Bob and I, my husband have had years that I never thought that I would have.

Why You Should Speak Up About MPN Symptoms and Treatment Side Effects

Why You Should Speak Up About MPN Symptoms and Treatment Side Effects from Patient Empowerment Network on Vimeo.

Why should myeloproliferative neoplasm (MPN) patients speak up about symptoms and treatment side effects? Dr. Naveen Pemmaraju explains the importance of reporting any issues you may be experiencing to ensure the best care for you.

Dr. Naveen Pemmaraju is Director of the Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN) Program in the Department of Leukemia at The University of Texas MD Anderson Cancer Center. Learn more about Dr. Pemmaraju, here.

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Transcript:

Katherine Banwell:    

Why is it so important for patients to speak up when it comes to symptoms or treatment side effects?

Dr. Pemmaraju:         

Well, I’m going to be that magician who you watch the TV show, they give away all the secrets. So, this is the big secret. Your doctor cannot read your mind. I hate to say that, Katherine. I just said it here, and it’s going to surprise some people. No, I mean, seriously. Right. So, I think the problem with the MPNs – not the problem, the caveat, the difficulty – is if you are a patient, you have this war that’s suffering inside of you. I know that as an expert person. You know that as a patient. But whoever you’re sitting in front of is not going to know that.

And there are two reasons for that. One is you don’t look like that. Most of our patients – whatever this is, I’m going to put this in big air quotes, so in case someone’s not watching this and they’re only hearing, I’m putting air quotes. People say to my patients, “Wow, you don’t look like a cancer patient.” Whatever that means, right? So, most of our patients don’t have their hair falling out, etcetera, etcetera. So, there’s that aspect of it, the visual education part of it.

Then there’s also the part, which is a lot of these symptoms burdens are not obvious on the physical exam. You cannot tell by talking to someone or looking at them if they have night sweats, bone pain, even itching, any of these things. Fatigue. You can’t tell if someone has fatigue most of the time unless you ask them. So, this is one of those where shared partnership in decision-making is not just a generic phrase. This is important.

I would say that for a patient with an MPN, the MPN symptom burden – the questionnaire, the 10 questions that we now have settled on – that can tell so much more or as much as the physical exam or the blood counts.

So, it’s imperative. It’s not just a luxury. It’s imperative. And if the patient themselves is unable to speak up, then if the advocate or caregiver or loved one can, if that person is available.

The other point I would say to this is that oftentimes the symptoms can precede – they can come before laboratory changes, physical exam changes, all these things. So, a constant, constant communication, “Hey, I was playing 18 holes of golf last year.”

“Now I can’t even get out of bed.” Hello? That tells you more than almost anything you can read on a piece of paper. So, you, as always, are spot on with what you said. And this is the case where people say, “What can I do to help my care?” This is it. Speak up, speak out. It’s your body, it’s your life, make sure you feel empowered to do that.

What Are the Goals of ET, PV, and MF Treatment?

What Are the Goals of ET, PV, and MF Treatment? from Patient Empowerment Network on Vimeo.

What goals are myeloproliferative neoplasm (MPN) care team members trying to achieve with ET, PV, and MF treatment? Dr. Naveen Pemmaraju reviews three factors that drive treatment decisions for quality, personalized MPN care.

Dr. Naveen Pemmaraju is Director of the Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN) Program in the Department of Leukemia at The University of Texas MD Anderson Cancer Center. Learn more about Dr. Pemmaraju, here.

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Transcript

Katherine Banwell:

Let’s talk about treatment goals first for ET, PV, and MF. What are the goals of treatment from a clinical perspective?

Dr. Pemmaraju:     

Well, I think the goals are divided up into three factors. So, I think for the MPN patient, goal number one has to be what the patient themselves want to achieve.

Oftentimes, that’s different than what’s on the numbers with the labs and what the physician wants. So, I think a lot of our patients correctly are suffering from – or mentioning to us that they’re suffering from quality of life issues. So, fatigue is the most common manifestation of all the MPNs, followed by bone pain, night sweats, inability to concentrate, etcetera, etcetera.

So, I think quality of life is the goal of most people, and I think that’s an admirable goal. And some of the medicines can help that. Some can actually hurt that in the short term. So, let’s put that as bucket number one. What does the patient want to achieve? Usually, it’s the alleviation of fatigue, itching, bone pain, etcetera.

Number two, I think, is the sort of on-paper game, if you will, right? So, what do the labs show, what does the bone marrow biopsy show, what does the spleen show? I think all of that is good, too, in that bucket. And clearly, if someone has transfusion dependent anemia, two times a week needing blood transfusions, and whatever treatment you can do can alleviate that down to once a week, once a month never – okay, that’s a win for the patient.

And then I think, finally, our goals. You’re right. You asked me specifically what are my goals for our patients? Well, I want to see that your overall survival has improved if I can. So, your length of life, your quality of life has improved. Minimization of side effects from whatever therapy we’re doing. If we’re going on a clinical trial or combining therapies in a novel way, that you’re not experiencing some brand new or idiosyncratic toxicity or side effect.

And then, finally, I think the key is to monitor for, let’s say, other things. Are you developing a second cancer? A second blood cancer. Are you having another problem that’s outside of your MPN, such as iron deficiency anemia or thyroid disease? Something that’s extremely common, has nothing to do with the MPN, but is also happening. And then do you have a healthcare team?

I failed to mention in your earlier question the primary care doctor., right? Let’s mention that person as well. If our patients have the general practitioner who they had already been seeing before the MPN diagnosis, or at least established one after, then some of these important aspects, like cancer screening, cholesterol checks, some of these other important things can be done in parallel to the MPN therapy and then, of course, combined at different points.

So, these are kind of my benchmarks for goals of therapy. They will vary from patient to patient and, of course, from case to case. The patient with advanced intermediate to high-risk myelofibrosis going to transplant, well, that’s markedly different from the patient who’s young with ET with no blood clots and relatively controlled blood counts.

Katherine Banwell:    

So, you just mentioned a couple of factors that you take into consideration, but there are others as well, I think. What about the patient’s age and overall health, for instance?

Dr. Pemmaraju:   

Could not be more important. You’re right. I think age – and let’s use that as a surrogate for what we call ECOG performance data.

So, the overall kind of fitness of a patient, may be the most important factor. And then followed by these other conditions, so-called co-morbidities. I’d like to talk about that for a second because that’s a lot of the program here. Depending on a patient’s age, performance status, fitness, and other organs that are involved, that actually leads to a couple of important points.

One, it may limit or reduce the number of treatment options that a person has based on their ability to even tolerate it in the first place. Both oral chemos that are available, some of these clinical trials that need to use an IV drug.

Number two, it may predict how your overall survival is going to be. So, perhaps your MPN, as we used in the other example, you have an earlier stage MPN that really doesn’t require treatment. It requires active observation.

But then on the other hand, you have advanced heart disease or kidney disease. That may actually do you more harm in the end.

And then, finally, right, is this concept that you have the co-morbidities and then you have the MPN and then they kind of change and morph over time where one is the dominant issue, the other isn’t. And so, you do need that decision care team as you were mentioning earlier. So, let’s definitely say that out loud that that matters. And I think it also reminds us that nothing is in a vacuum. The MPN doesn’t exist in an isolated space, right? So, your MPN co-exists with your heart disease, your kidney disease, your lung disease, your past, your present habits, anything.

Dr. Pemmaraju:     

I think sometimes, as physicians, we may not ask, and as patients, we forget to mention, oh, X, Y, Z in my history, or “Oh, I’m taking this herbal supplement.” Sometimes these things are important to mention.

So, when in doubt, bring up everything to your care team so that you can make decisions together.

Katherine Banwell: 

It might help to make notes before you go in to talk to your doctor.

Dr. Pemmaraju:    

Absolutely. That doesn’t hurt, and it could help you at least organize your own thoughts even if you don’t use them in the visit.

How to Make an Informed MPN Treatment Decision

How to Make an Informed MPN Treatment Decision from Patient Empowerment Network on Vimeo.

When faced with several options, how can you decide on the best therapy for your essential thrombocythemia (ET), polycythemia vera (PV), or myelofibrosis (MF)? In this explainer video, Katrina and her doctor walk through important considerations when choosing treatment and provide advice for partnering with your healthcare team.

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Transcript:

Katrina:

Hi, I’m Katrina. Nice to meet you!

Several years ago, I started having headaches and felt very tired. After a trip to the doctor and undergoing bloodwork, I was diagnosed with polycythemia vera, or PV, which is a rare blood cancer that causes my body to produce too many blood cells. It was overwhelming at the time to learn that I had a blood cancer, but my hematologist, Dr. Liu, told me more about the condition and how it’s managed.

Here’s Dr. Liu–she can explain it further.

Dr. Liu:

Hi! I’m Dr. Liu, and I’m a hematologist specializing in the care and treatment of people with myeloproliferative neoplasms or MPNs. MPNs are a group of blood cancers that are characterized by the bone marrow overproducing a certain type of cell. Katrina was diagnosed with PV, which is one of the three MPNs. The three types of MPNs are:

Essential thrombocythemia, or ET, which means that the body is producing too many platelets. The second is polycythemia vera or PV. PV is characterized by the overproduction of red blood cells, and, in some cases, elevated white blood cells and platelets. And the third is myelofibrosis or MF, which causes scarring in the bone marrow that disrupts the normal production of blood cells.

When a patient is diagnosed with any of these conditions, there is a chance they could progress from one condition to the next.

Those that have been diagnosed with ET, PV or MF, should have regular visits with their hematologist to monitor their condition and find the most appropriate treatment to manage their MPN.

Katrina:

After I was diagnosed, I met with Dr. Liu and she walked me through the goals of treatment for PV.

Dr. Liu:

Right! First, we talked about the clinical goals of treatment for PV, which are to reduce the risk of a blood clot and ease or eliminate any symptoms.

And, it’s important to note that because each of the MPNs is different, they are treated differently – be sure to discuss the specific goals of YOUR MPN with your doctor.

Katrina and I reviewed the effectiveness of each treatment option, including how treatment would be administered, and took all of her test results into consideration to make sure we found the best, most personalized treatment option for her PV. Then, we went over what our next steps would be if the treatment plan needed to be adjusted.

Katrina:

Next, we talked about another key treatment goal: symptom management. Dr. Liu let me know that I should make her aware of any symptoms that I may be having, even if I don’t think it’s related to my PV.

Dr. Liu:

Exactly, Katrina. A significant change in symptoms can indicate that it may be time to switch treatments or that the disease might be changing. Those symptoms may include enlarged spleen, fever, itching, fatigue and anemia, among others. This is why it’s always important to not only have blood counts checked regularly, but it’s essential to tell your doctor or nurse about any symptoms you may be having, even if you don’t think it’s related to your MPN.

And, last but not least, we discussed the most important treatment goal: Katrina’s goals. Katrina let me know that she’s very social and enjoys playing golf and tennis with her friends – we wanted to make sure she could continue doing the activities she loves.

Katrina:

Dr. Liu reviewed each of the treatment approaches with me, including potential side effects for every therapy and how it could impact my lifestyle. We discussed the pros and cons of each option, together.

Dr. Liu:

Exactly! When deciding on therapy, you and your doctor may also consider:

Your age and overall health, any presence or history of other medical problems, and the financial impact of a treatment plan.

Katrina:

In addition to asking questions, my daughter, Sarah, took notes during our appointments, since it was often hard for me to absorb everything at once.

We also made sure to talk about the appointment on our way home, while the information was fresh on our minds. And we did our part by researching PV and bringing a list of questions to each appointment.

Sarah found an office visit planner on the Patient Empowerment Network website that helped me organize my health info and questions.

Dr. Liu:

As you can see, Katrina and her daughter were actively engaged in each care decision. It’s vital that patients feel empowered to speak up. If you can, bring a friend or loved one along to your appointment.

And, if you are able, it’s a good idea to seek a second opinion or a consultation with an MPN specialist to help you feel confident in your care decisions.

Katrina:

Dr. Liu let me know that she would monitor my condition through regular physical exams, blood work and frequent communication. She made Sarah and I feel included in the decision-making process, as if it were a collaboration.

Dr. Liu:

That’s right. This is a partnership. So, what steps can you take to be more engaged in your MPN care?

  • Bring a friend or loved one to your appointments.
  • Understand and articulate the goals of your treatment plan.
  • Learn about your options and weigh the pros and cons of each approach.
  • Consider a second opinion or a consult with a specialist.

Katrina:

That’s great advice, Dr. Liu. To learn more, visit powerfulpatients.org/MPN to access a library of tools.

Thanks for joining us!

Which CLL Treatment Is Right for You? What You Need to Know

Which CLL Treatment Is Right for You? What You Need to Know from Patient Empowerment Network on Vimeo

What do you need to know before deciding which treatment is best for YOUR CLL? Dr. Lindsey Roeker discusses the role of key CLL tests, including biomarker testing, reviews emerging research, and provides tips for partnering with your care team to advocate for the best care. 

Download Guide

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Transcript:

Katherine:

Hello, and welcome. I’m Katherine Banwell, your host for today’s program. Today we’re going to discuss how to access the most personalized CLL treatment for your individual disease, and why it’s essential to insist on key testing. Before we meet our guest, let’s review a few important details. The reminder email you received about this program contains a link to program materials. If you haven’t already, click that link to access information, to follow along during the webinar.

At the end of this program, you’ll receive a link to a program survey. Please take a moment to provide feedback about your experience today, in order to help us plan future webinars. And finally, before we get into the discussion, please remember that this program is not a substitute for seeking medical advice. Please refer to your healthcare team about what might be best for you. Joining me today is Dr. Lindsay Roeker. Dr. Roker, thank you so much for joining us. Would you introduce yourself?

Dr. Roeker:                 

Absolutely. So, my name is Lindsey Roeker, and I am a member of the CLL program at Memorial Sloan-Kettering Cancer Center in New York City.

Katherine:                  

Excellent, thank you. Let’s start at the beginning. How is CLL diagnosed?

Dr. Roeker:                 

Absolutely. So, for most patients, CLL is diagnosed after a routine blood test shows a high white blood cell count. That’s kinda the most common way that we find people entering into our clinic. Other things that people can notice is they have lumps or bumps that they’ve felt in their neck or under their armpits. Those are some other symptoms that can lead to the diagnosis, but often once a patient finds that their white blood cell count is high, some additional testing is done, and the diagnosis of CLL is made.

Katherine:                  

What are some common symptoms of CLL? You mentioned the lumps and bumps.

Dr. Roeker:                 

Yeah. So, often in early stages, the lumps and bumps in the neck are the most common that people recognize, but fevers or chills, night sweats, where patients are waking up drenched, having to change their pajamas, or weight loss without trying, are some other symptoms that can raise some alarm bells and make people start looking for something.

 And CLL can be a diagnosis that can be found through that, as well.

Katherine:                  

What is watch and wait?

Dr. Roeker:                 

So, after diagnosis, about two-thirds of patients enter this period of watch and wait, and what that means is we have good data to say that treating CLL before it’s causing symptoms doesn’t help people live better or live longer. And for that reason, we use the approach of watch and wait, and what that really means is you see your doctor a few times a year. I see people every three to four months. And you have your labs checked, have a physical exam, and through that process, just ensure that there are no symptoms that the CLL is causing that warrant therapy.

Katherine:                  

That’s very helpful. Thank you for that. Now, what tests are necessary to help understand a patient-specific disease, both at diagnosis and prior to treatment?

Dr. Roeker:                 

So, a diagnosis flow cytometry is the first test done, and what that means is, you take all of your white blood cells in your blood, and you run them through a fancy machine that puts them into buckets. So, you have a bucket of your normal neutrophils, a bucket of your normal lymphocytes, and then you find this bucket of cells that look somewhat unusual. And those have a specific look, if you will, and if they look like CLL cells, that’s how we make the diagnosis.

As you start reading, you’ll find that people talk about monoclonal B-cell lymphocytosis, which is MVL, CLL, and SLL, and a lot of times, it’s confusing because you start reading, and there are all of these – kind of lingo around it. So, what we’re looking for with flow cytometry is how many cells are in the peripheral blood? If it’s fewer than 5,000 per microliter – so, your doctor will talk to you; they’ll either say five or 5,000, depending on what units they’re using.

If it’s lower than that, and you don’t have any lumps or bumps or lymphadenopathy, meaning enlarged lymph nodes, that’s when we make the diagnosis of monoclonal B-cell lymphocytosis.

So, that’s kind of a pre-cancer diagnosis. Then, CLL, the diagnosis, is made in any patient who has greater than 5,000 cells per microliter, or five, if you’re using that unit, and that’s when the diagnosis of CLL is made. If people have lymph nodes that are enlarged, and there are CLL or SLL cells inside of them, but not a lot of involvement in the blood, that’s when we make the diagnosis of SLL, which is small lymphocytic lymphoma. So, CLL and SLL are really the same disease; it’s just where they manifest, primarily. So, whether it’s mostly in the blood, that’s CLL, or mostly in the lymph nodes, and that’s SLL.

Dr. Roeker:                 

Nope. So, that’s the flow cytometry test, and that’s kind of the test that leads to the diagnosis.

Katherine:                  

Got it. What about FISH and TP53 mutation?

Dr. Roeker:                 

So, at diagnosis, I often do this testing. Depending on which provider you go to, you may do it at diagnosis or closer to the time of needing treatment. But FISH is basically a test that looks for big changes in the chromosomes. So, if you remember back to high school biology and you see all of those chromosomes laid out, what FISH is looking for is big changes in those chromosomes. So, is there an entire arm of one of the chromosomes missing? And that’s what FISH does.

There’s also something called karyotyping, or in some institutions, they use something called SNP array. These are more refined tests that look for additional changes in the DNA. So, FISH is kind of a targeted look at a few different chromosomes, whereas karyotype or SNP array looks at all of the chromosomes. Then, there is TP53 mutational testing, and that is done through a bunch of different testing, often next-generation sequencing is what we use.

And we basically use a fancy spellcheck to see if there’s any misspellings, if you will, in TP53.

And TP53 is a gene that we use. It’s called the guardian of the genome. So, its job is basically to make sure that our cells are reproducing. They keep all the genes in working order. If TP53 is missing or misspelled, it doesn’t work as well, and that’s when people can get more issues with their CLL. It tends to be CLL that behaves a little more aggressively.

Katherine:                  

What about IGHV mutation status?

Dr. Roeker:                 

So, IGHV mutation status is a really important feature because it really is, of all of the things, what helps us understand the best way to go about therapy. And IGHV mutational status is basically a signature of the CLL that helps you understand how mature or immature the CLL cells are.

In general, mature cells tend to behave a little bit more predictively, and in ways that behave a bit better with therapy. So, the more mature cells are actually mutated IGHV, and I know that’s backward, because usually we think of mutated as being back. But in this case, mutated is actually those cells that are a bit more mature, and that just has to do with how white blood cells develop in our body. If it’s IGHV-unmutated, those tend to be the more immature cells that can behave a little more erratically.

Katherine:                  

Which tests need to be repeated over time?

Dr. Roeker:                 

So, IGHV mutational status never changes, so that one does not need to be repeated. TP53 mutational status, FISH, and karyotype or SNP array, are ones that I tend to repeat before we start any therapy. So, at the time that you’re going to start your frontline therapy, and then if you have the disease come back and need to be treated again, I usually repeat those tests because those can change over time.

So, that’s both FISH, karyotype or SNP array, and the TP53 mutational testing.

Katherine:                  

Okay. So, it sounds like it’s important for patients to make sure they’ve had this testing. What do the test results reveal about a patient’s prognosis?

Dr. Roeker:                 

So, IGHV mutational status, like I said, really helps us understand how to approach therapy. In general, CLL is a disease that we are increasingly managing with targeted medicines, so drugs that really manipulate the cell biology to either stop the growth of cells or kill the cells so that they pop open. And that has been a trend that has taken place over the last six or seven years, and definitely has revolutionized the treatment of CLL. There is still a small minority of patients, the patients who have IGHV-mutated disease, and are younger, and have fewer other medical problems, that can still be good candidates for chemotherapy.

And the reason that I say that is because in general, chemotherapy for those young, mutated patients cures a subset of patients, so when we look at long-term studies of FCR, which is a combination of chemo and immunotherapy, there are a subset of patients who have a really long period where their disease doesn’t come back, to the point that we call them cured or functionally cured. That’s obviously a word that has a lot of emotional charge around it, and it’s hard because there’s always the possibility of the disease coming back in the future.

But because of those long-term outcomes, we know that there’s some patients that can really have long-term benefit from chemoimmunotherapy.

For IGHV-unmutated patients, and especially for patients with TP53 mutations or deletion of 17p, chemoimmunotherapy really is not the right answer, with all of the medications that we have available to us now.

Katherine:                  

We have an audience question. Mike wants to know, “What does it mean to have high-risk CLL?”

Dr. Roeker:                 

So, great question, and the interesting thing is that I think the answer to that question is evolving. So, deletion of 17p, deletion of 11q, and TP53 mutation have historically been markers of more aggressive disease or unfavorable CLL. In the era where we only had chemo and immunotherapy, we know that patients had less great outcomes. We know that the treatments tended to not work as well, and patients had disease that tended to come back faster, and things like that.

 That’s all evolving in the era of targeted agents. We have some indication that probably patients who have more aggressive underlying disease biology, meaning disease that’s going to behave less well, kind of regardless of what we treat it with, certainly may derive less benefit, meaning that the treatment will work for less long. That being said, these treatments are still really effective for our patients who have traditionally high-risk disease. So, I think it still remains to be seen, in terms of long-term outcomes and what to expect for patients that have these traditionally high-risk characteristics.

Katherine:                  

So, now that we understand how these tests affect prognosis, let’s discuss how they can affect treatment options. Let’s run through a few potential results so we can understand how you might approach each patient type. If someone has deletion 17p, what is the approach?

Dr. Roeker:                 

So, there are two totally reasonable frontline treatment options.

So, BTK inhibitors, which are – the current approved ones are ibrutinib and acalabrutinib, are completely a reasonable approach in the frontline setting, meaning the first treatment that someone gets, and those are pills that you take daily. For ibrutinib, it’s once a day. For acalabrutinib, it’s twice a day, for as long as they’re working. And the idea is, with this approach, you keep on those medicines, and they keep the disease suppressed. So, that’s the first option.

The second totally reasonable option is a combination of venetoclax and obinutuzumab. So, venetoclax is a pill and obinutuzumab is an IV medicine, and the way that this was studied was a total of one year of therapy. So, from the time you start until you’re done with all of your treatments, that’s a one-year course. And the drugs have different side effect profiles, and depending on other medical problems, patient preference about, let’s just take a pill and that’s easy, versus the combination of pill and IV medicines, either can be a completely reasonable choice.

It just depends a lot on patient and doctor preference.

Katherine:                  

What about the TP53 mutation?

Dr. Roeker:                 

So, both of those treatment options seem to work very well for TP53-mutated patients. We had that discussion about the possibility of chemoimmunotherapy for a small minority of patients, and for patients with a TP53 mutation, using chemoimmunotherapy up front is probably not the correct answer. It’s better to go with one of the targeted drug approaches.

Katherine:                  

You mentioned, Dr. Roeker, the IGHV mutated and unmutated. How would you approach each patient type, if a patient is IGHV unmutated?

Dr. Roeker:                 

So, IGHV-unmutated is the same discussion. Chemoimmunotherapy is probably not going to provide a durable, meaning it’s not going to last for a long time. We’re not going to achieve that potential cure. So, for those patients, either the BTK inhibitor approach, or the venetoclax/Obinutuzumab approach is completely a reasonable one to take.

Katherine:                  

And if they’re IGHV-mutated?

Dr. Roeker:                 

IGHV-mutated patients who are young and don’t have a lot of other medical problems, that’s when we add in the third option of chemoimmunotherapy. For many patients, it’s not wrong to choose either a BTK inhibitor or venetoclax/Obinutuzumab, but it does add in that third potential option of chemoimmunotherapy.

Katherine:                  

Are there other markers that patients should know about?

Dr. Roeker:                 

I think those are the big ones.

So, TP53 mutation status, FISH, and karyotype kind of gets you most of them. Some centers do additional next-generation sequencing of other genes that have been associated with higher-risk disease, though really understanding how to interpret those results still remains somewhat unclear, and that’s still an area of research that people are doing, to really understand what those other mutations really mean for people.

Katherine:                  

What about the impact of testing, overall? Why is it so important?

Dr. Roeker:                 

So, as we’ve moved from a disease that was really only treated with chemoimmunotherapy, to one that has targeted drugs available, knowing your IGHV mutational status really impacts what your frontline treatment options are. That’s the major therapy-defining risk factor. The other mutations help you know what to expect. So, for patients who have deletion of 17p or TP53 mutation, it’s possible that the treatments are going to, overall, work for a shorter period of time.

All that being said, every person is an individual, and it’s hard to predict exactly how long someone’s going to respond, from an individual basis. So, what I tell my patients is, “I could tell you what 100 of people with exactly your same disease would do, on average, but I can’t tell you exactly what’s going to happen for you. And that’s a journey that we’re going to take together and really understand over time.”

Katherine:                  

These are really great points, Dr. Roeker. Now, we’ve talked about this a little bit. What are other important factors to consider, like a patient’s age, that can help them access the best treatment for their CLL?

Dr. Roeker:                 

So, age is important. Other medical problems is actually a very important consideration.

So, these medications have different side effect profiles and behave differently in different people. So, the BTK inhibitors, specifically ibrutinib is the one that we have the most data on, has cardiovascular side effects, so it can cause atrial fibrillation. It can cause high blood pressure. So, for patients who have preexisting heart disease, or preexisting atrial fibrillation that has been hard to control, or blood pressure that has been hard to control, for those people, I think adding in a BTK inhibitor can be a bit more of a higher risk situation than in somebody without those preexisting problems.

Venetoclax is a pill that causes the cell to burst open rapidly, and it kills cells very quickly. Because of that, the major side effect is called tumor lysis syndrome, and tumor lysis syndrome is basically the cell opens up and all of the salt inside of it goes into the bloodstream.

And that salt can actually be really hard on the kidneys. So, for people who have kidney problems, venetoclax can be somewhat more challenging to use and just requires a higher level of vigilance. So, for patients who have preexisting kidney disease or the idea of a lot of monitoring and things like that, is more challenging. Then maybe the BTK inhibitors are a better choice.

Katherine:                  

How do you monitor whether a treatment is working?

Dr. Roeker:                 

So, a lot of it has to do with the CBC, so your normal blood count, and what we’re looking for is improvement in hemoglobin and improvement or normalization of platelet count. And for many people, those, either anemia or low platelets, are the symptoms that drive people to be treated in the first place, so we’re looking for those parameters to get better.

With a lot of people with CLL, totally understandably, because it’s the number that’s the most abnormal, really focused on white blood cell count. 100% understandable.

I always tell people that that’s actually the part of the CBC that I care least about, and the reason is that, for patients on BTK inhibitors, we expect to see the white blood count actually get higher before it gets less high. That’s actually just a sign that the drug is working and it’s pulling CLL cells from the lymph nodes into the bloodstream. So, that’s actually a good sign that it’s working, and that lymphocyte count, at least in the beginning, isn’t a great marker of how well the drug is working.

The other thing that’s important is the physical exam, so looking for whether any lymph nodes that were enlarged have normalized or gone away, and also feeling the sides of the spleen, because the spleen can become enlarged with CLL, and it’s important to make sure that’s normalizing, as well.

And then the last piece is talking to people, so making sure that if they were having fatigue, or fevers, or night sweats before they started treatment, to make sure that those symptoms have gone away. And that’s kind of the three things that I use. I use the blood counts, the physical exam, and the interview with a patient to really understand how their disease is responding.

Katherine:                  

Dr. Roeker, why is it important for patients to speak up if they’re experiencing side effects? I know that they sometimes feel like they’re bothering their healthcare team.

Dr. Roeker:                 

Thank you for that question, because it’s really important point. Side effects are easiest to manage when you catch them early. So, when people have, for instance, muscle pain or joint aches, I have lots of tricks up my sleeve to help people, but I need to know about it. So, if people don’t tell me until they have joint pain that’s so bad that they’re not able to exercise or not able to get out of bed easily in the morning, that’s taking it – it’s gone on for a while at that point, and it’s pretty far down the line.

First of all, you wouldn’t have had to suffer for that long because we have ways of fixing it, and second, it’s always harder to fix a problem once it’s further down the line than earlier on. So, I talk to people about what side effects they might experience and what to expect, and then we talk about different management strategies to really nip it early so that we’re not dealing with a really huge problem down the line.

Katherine:                  

We have a question from our audience. Maria asks, “I just found out that I will need to undergo treatment again. I was previously treated with FCR. Does that impact my options now, going forward?”

Dr. Roeker:                 

Great question. So, FCR was a really common treatment strategy before we had all of the drugs that we have available now. We have good data to say that both BTK inhibitors and venetoclax-based treatments work after chemoimmunotherapy. In fact, those were the patients in whom these drugs were really initially studied, so we actually know better in that group of patients how they’re going to work, than in the patients who have never been treated with them, in terms of the amount of data and the long-term follow-up that we have.

So, most likely, your provider will still talk to you about kind of the two therapeutic option being a BTK inhibitor-based approach versus a venetoclax-based approach, and either are completely appropriate in that setting.

Katherine:                  

We have another question from our audience. Eileen is currently in active treatment for her CLL, and she wants to know, “Is the COVID-19 vaccine safe for her?”

Dr. Roeker:                 

Great question. So, here is my take on COVID vaccines. We have great data on the safety of these vaccines, so the risk of a life-threatening allergic reaction is very, very low, less than one in a thousand. We know that it can cause some irritation at the injection site, so pain in your arm. We know that it can cause some kinda flu-like, blah symptoms for a couple of days, totally fine to take ibuprofen and kinda get yourself through that period.

But from a safety perspective, I don’t have concerns about these vaccines. There’s a lot of social media coverage on long-term implications that are either not based on data, at all, and just speculation, and people who are trying to raise alarm, or people who are really bringing up bad things that are happening to people really far out from the vaccine. And I think it’s really hard to attribute that to the vaccine. Obviously, any time there is a new technology, there’s the possibility of things happening, and we’re going to know more with time, but I think, overall, from a scientific perspective, there is no data that makes me worried about the safety of this vaccine.

The efficacy question, I think, is more of an open question, and the reason I say that is two-fold. The first is, we know that patients with CLL who get other vaccines, some get 100% coverage, some get zero percent coverage, and some are somewhere in between.

And it’s hard to predict who is going to fall where. So, that’s the first piece. The second piece is, we’ve looked at patients who had CLL and got COVID, and we saw if they made antibodies, which is kind of a marker of an immune response, and it’s not consistent that every patient who got COVID makes antibodies.

So, the combination of those two pieces of data makes me question exactly how well they’re going to work. So, what I’m telling my patients is, “Definitely go ahead and get it. I think it’s safe. And then pretend that you didn’t get it.” So, I know that’s hard advice to hear, but continue wearing a mask, continue social distancing, and continue to wash your hands. And then, every interaction you have is a risk-benefit discussion or decision. So, that’s different for every person, but in general, I recommend that people continue being cautious.

Once the whole population around you is vaccinated and we have less virus circulating in the community, that’s when it’s going to be substantially safer. So, definitely, I recommend that people get it, regardless of whether you are on watch and wait, getting treatment, have just finished treatment, whatever it is, but I do think there’s reason to be cautious even after getting vaccinated.

Katherine:                  

Are there symptoms or issues CLL patients should be looking out for, post-vaccine?

Dr. Roeker:                 

Not particularly, beyond what people are getting in kind of the general population. If you’re having a lot of those kind of flu-like symptoms, just talk to your provider to make sure that ibuprofen is safe, because if your platelets are really low, that can cause bleeding. But Tylenol is typically pretty safe, and talk to your doctor about which medicines are kinda best for you to take in that situation, but no particular concerns in patients with CLL.

Katherine:                  

Okay. Thank you for the clarification. As I mentioned at the start of this program, patients should insist on essential CLL testing. As we conclude, I think it’s important to point out that some patients may not know if they’ve received these important tests, so how can they take action?

Dr. Roeker:                 

So, the next time you’re at your doctor, ask, “I just want to know more about the prognosis of my CLL, and can we talk through the genetic markers of my disease, to help me understand what to expect?” That’s kind of code for, “Let’s go through all of these test results,” and it also – if you have a provider who doesn’t routinely test them at diagnosis, and for instance, just tests before treatment, they can also kind of give you their sense of when they do the testing, so you know what to expect. And I think that’s an important discussion to have with your provider, for sure.

Katherine:                  

Are there key questions that patients should ask their physicians?

Dr. Roeker:                 

I’m always impressed with the questions that people come up with. I think one of the best is, what should I expect, based on what we’re doing now? It’s always a hard question to answer because, obviously, for any patient, it’s so individualized, but I think understanding what to expect, as a general sense, is a good way to approach both treatment and prognosis, and all of those kinds of things.

Katherine:                  

I’d like to close by asking about developments in CLL research and treatment. What’s new that you feel patients should know about?

Dr. Roeker:                 

So, there are a lot of exciting drugs coming up in CLL. We have the BTK inhibitors, ibrutinib and acalabrutinib approved. We have more BTK inhibitors with different side effect profiles that are in development.

And there’s also a new class of drugs called noncovalent BTK inhibitors, which seem to work well, even when prior BTK inhibitors have stopped working. So, that’s a really exciting development. There is also just lots of studies about how we combine drugs to maximize efficacy while minimizing side effects, and all of these studies that are underway are really looking at refining how we approach treatment so that we can treat people very effectively but also minimize their side effects.

And as we have more results available, the treatment paradigm for CLL is going to continue to shift and evolve, and I think there are a lot of exciting things coming, and there’s definitely a lot of reason to be hopeful, that the future of CLL is even brighter than the present.

Katherine:                  

It all sounds very promising, Dr. Roeker. Thank you so much for joining us today.

Dr. Roeker:                 

Thank you so much for having me. I really appreciate it.

Katherine:                  

And thank you to all of our partners. If you would like to watch this webinar again, there will be a replay available soon. You’ll receive an email when it’s ready. And don’t forget to take the survey, immediately following this webinar. It will help us as we plan future programs. To learn more about CLL and to access tools to help you become a proactive patient, visit powerfulpatients.org. I’m Katherine Banwell. Thanks for joining us.