Tag Archive for: coronavirus

MPNs and Coronavirus: What Patients Should Know

MPNs and Coronavirus: What Patients Should Know from Patient Empowerment Network on Vimeo.

Dr. Srdan Verstovsek provides guidance for patients with myeloproliferative neoplasms (MPNs) related to coronavirus (COVID-19), stressing the necessity of continued communication with their healthcare team.

Dr. Srdan Verstovsek is Chief of the Section for Myeloproliferative Neoplasms in the Department of Leukemia at The University of Texas MD Anderson Cancer Center. Learn more about Dr. Verstovsek, here.

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Transcript:

Dr. Srdan Verstovsek:

When we come to the COVID pandemic here, and the effect on our patients with myeloproliferative neoplasms, of course, that is something that is very serious. Our patients, particularly those with advanced myelofibrosis, are at a high risk of having complications from infection if they get infection. Perhaps less so for patients with ET and PV, which are more healthier, if you like, although they have myeloproliferative neoplasms.

So, our focus here is, first of all, like it is for anybody else, including myself, on prevention.

Obviously, that would be common sense and logical to try to prevent getting infected. And then, also to try to be in best possible health. Taking medications as prescribed. Being in touch with your doctor. If you cannot come to a physical exam, which is understandable because of possible increased risk through the transportation perhaps, then being in touch through telemedicine. We call, and we see our patients online. That is fine. We can do the bloodwork from the distance.

So, taking medications, being fit, and being as healthy as you can with the disease. But taking medications and controlling your risks, not allowing disease to take ahold of you, and then you get infection and you’re gonna be in trouble.

So, really communications with the doctors, taking medications, and I would say, occasional, with all precautions, visits.

Because, for example, with myelofibrosis patients, I really need to feel that spleen and the liver and see how is the patient’s weight, and not only ask over the telephone, what’s your symptoms are, or what your blood count is. I can see this on the computer. We really need, occasionally, myelofibrosis patients to come over to our clinic to be examined.

And here, in the clinic, we have extraordinary precautions. No visitors. No people to accompany patients in. So, to minimize any interactions with anybody who possible can bring any undesirable infections through the door, not just COVID, but any other. And the staff is prepared to provide excellent care with protection that is in place.

So, I think that will be my message: Prevention; staying on top of your disease; being in best possible shape with the disease; staying in touch with your doctor; and, occasionally, still visit the doctor if at all possible, particularly for myelofibrosis patients.

Ask Your Doctor About These Essential Genetic Tests for CLL

Ask Your Doctor About These Essential Genetic Tests for CLL from Patient Empowerment Network on Vimeo.

Genetic testing results can impact a chronic lymphocytic leukemia (CLL) patient’s treatment options and provide a deeper understanding into their disease. Dr. Steven Coutre, a CLL specialist, reviews essential tests and explains their role in CLL care.

Dr. Steven Coutre is a Professor of Medicine in the Hematology Department at Stanford University Medical Center. Learn more about this expert here.

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Transcript:

Dr. Steven Coutre:

In terms of testing for CLL, additional testing, of course, diagnostically, it’s generally not a challenge. It’s very straight-forward. A test that we call Flow Cytometry on a blood sample is usually sufficient to establish the diagnosis. Very, very uncommonly would a bone marrow exam be needed, for example. And in routine practice, also, we don’t necessarily give CT scans to establish a diagnosis or even to, as people say, stage the disease. It really isn’t necessary in most cases.

However, we do have a staging system that correlates with the extent of the disease and that’s simply based on our exam and blood counts, but people also want more information. They wanna know how they’re gonna do, specifically. So, we can add additional tests, genetic testing as people often call it, that can further subdivide individuals into groups that give you additional information on how you might do, meaning if you’re without symptoms, and an observation is recommended, you wanna know, “Well, how long is it gonna be before I need treatment?” Although our staging system gives that information, we can refine that further.

One test is the so-called FISH test, which looks at specific chromosome abnormalities, and the second test that’s generally used is called the IGHV Mutation Assay. That’s really looking at what’s called the mutational status of your immunoglobulin genes. So, it’s really those two broad categories that are most relevant.

Now, we don’t necessarily advocate doing that testing on everyone at the time of diagnosis. Certainly, not everyone who is without symptoms, where we’ve already decided that treatment is not indicated. So, as you can imagine, you can do that testing. You might come up with a profile that’s less favorable. And then, instead of the watch and wait approach, or as folks like to call it, “watch and worry approach,” you worry even more. But then, of course, if you have a favorable profile, then you’re happier. You’re more pleased.

However, we don’t do anything differently regardless of what those tests show, at least at current state. Compared to a decision that’s already been made about treat or not treat. We do, however, strongly advocate getting that testing at the time of treatment, and sometimes, repeating some of the testing with subsequent treatment, when you require treatment, say, a second time, in some cases. So, very important to have a discussion about these tests and what information you will get from them.

Well, we’ll often see patients who are coming for another opinion about their disease. Perhaps they’ve been recently diagnosed, and they have been advised for observation, so, it’s, of course, natural to ask whether that’s a reasonable approach. And in that context, other testing often comes up in the conversation. Perhaps they had the testing done, the FISH, and the mutational testing, and they wanna know what it means, or actually we see some results that have been obtained and we ask them about it. And there’s very often confusion, or really lack of information about what they mean.

So, we really try to discuss that issue. That issue of testing with each and every patient, whether or not they’ve had it done, really trying to let them know what it means. That way they’re fully informed, and in some cases, people feel very strongly that they would like to have it done, even through they realize that we’re not gonna act on it at that point. So, I think pretty much for all patients, it should be part of the initial discussion.

Again, in terms of genetic testing are these tests that I discussed. It’s important to understand what information they give you so you understand why your physician may be making a distinction between one therapy versus another. It is very, very important to get that testing, if somebody is talking about using chemotherapy, for example, hopefully. That’s quite uncommon. But with our newer agents, we know that they work broadly despite those other features.

Nevertheless, I think it’s important for a patient to at least expect the discussion about these tests. We’re not asking you to go to your physician and ask that they be done in all cases, but really understand perhaps why your physician recommended that they not be done at that particular time. 

Advocate for These CLL Genetic Tests

Advocate for These CLL Genetic Tests from Patient Empowerment Network on Vimeo.

Genetic testing results can influence a chronic lymphocytic leukemia (CLL) patient’s treatment options and provide a more in-depth understanding into their disease. Dr. Philip Thompson, a CLL specialist, reviews key tests that CLL patients should advocate for.

Dr. Phillip Thompson is an Assistant Professor in Medicine in the Department of Leukemia at The University of Texas MD Anderson Cancer Center. Learn more about this expert here.

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Transcript:

Dr. Philip Thompson:

I would say that I see a lot of patients that have previously seen an oncologist closer to home and then traveled to MD Anderson for a second opinion. And so, I can say that over the last three or four years, there’s definitely a significant change in the awareness of physicians in general about doing genetic testing for CLL.

So, in particular, almost everybody will get a FISH test, which I didn’t always see three or four years ago. And more patients are now having IGHV mutation status analysis done. The thing that I see that is very rarely done, though, is what we call next-generation sequencing, or NGS, that looks for mutations in individual genes, and most importantly, in the TP-53 gene that I mentioned.

So, I would – and the other thing that often isn’t done is what we call a carrier tag, which is a routine analysis of the chromosomes of the CLL cells. And it requires some special techniques for the lab to get it to work in CLL. But that can actually provide additional information compared to just FISH.

So, I would suggest to a patient, particularly if they’re gonna do a bone marrow biopsy on you, which is an invasive procedure, that you really try to get some clarity around what tests are going to be ordered on that beforehand. And if you’ve just been diagnosed and you’ve got early-stage CLL, you can make an argument about how many of these tests are absolutely necessary to start with. Because the biggest utility in these tests is in determining what type of treatment you’re going to have.

If you’re not immediately going to have treatment, they don’t necessarily change what your oncologist is going to do. They’re going to monitor you over time and see if your disease is getting worse or not. But I still think they’re useful to have the – a lot of them are useful, particularly the IGHV mutation status and FISH are useful to have at initial diagnosis. Because they give you a really good idea of what the biology of this disease is – this patient’s disease is like and how quickly they’re likely to progress, and that may change how frequently you monitor the patient.

But anyway, I would say it’s important to ask them what genetic testing you are gonna get. And that you ask – have an understanding of what can be ordered.

 And in particular, if you’re going to get treatment, you must ask for TP-53 sequencing, FISH for 17-P deletion, and IGHV mutation status because those three things are essential to determine the optimal treatment that you have. And you shouldn’t feel shy about asking, are those things going to be done.   

What Do Genetic Tests Reveal About My CLL Treatment Options?

What Do Genetic Tests Reveal About My CLL Treatment Options? from Patient Empowerment Network on Vimeo.

 
Genetic testing results can influence a chronic lymphocytic leukemia (CLL) patient’s treatment options and provide a more in-depth understanding into their disease. Dr. Phillip Thompson, a CLL specialist, reviews three important testing results that can impact treatment timing and approaches.
 
Dr. Phillip Thompson is an Assistant Professor in Medicine in the Department of Leukemia at The University of Texas MD Anderson Cancer Center. Learn more about this expert here.

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Transcript:

Dr. Philip Thompson:

So, there are three main things we look at before initiating treatment in a patient.

One is what we call the IGHV mutational status of the patient. And this basically splits people into types of CLL. So-called mutated or unmutated. And this is a relatively complex concept. Basically, what happens in normal B-lymphocyte development, so B-lymphocytes are part of your immune system. Their job is they have a probe on the surface of the cell that looks for invading microorganisms. And when they find an invader, this probe binds to the organism. And then the cell actually undergoes, as part of its normal development, a process of mutation so that it makes the best possible antibody to fight that infection. So that’s a normal process that the B-lymphocyte undergoes when fighting infections.

So, CLL can arise from what we call a mature antigen-experienced mutated B-cell, or it can arise from a naive B-cell that has never gone through that process, in which case, it will have an unmutated IGHV. Now, it’s kind of counterintuitive, but the patients with a mutated IGHV generally have better outcomes. That type of CLL is less proliferative, it doesn’t grow as fast, and it also tends to respond better to certain types of treatment. Particularly, it responds better to chemotherapy than patients with unmutated IGHV.

However, the difference between those two is less important if you’re getting some of the newer therapies. Particularly, it seems like if you receive BTK inhibitors, it doesn’t really matter if you have mutated or unmutated IGHV, patients are responding very well. But I like to know whether they have a mutated or unmutated IGHV because it’s helpful for giving the patient an expectation of how their disease is likely to behave biologically.

But also, if they have a mutated they may be a candidate for chemotherapy-based treatment. Whereas if they have unmutated IGHV, I don’t use chemotherapy for those patients.

 

The second thing is a test called FISH. And FISH looks for chromosome abnormalities. So, we have 46 chromosomes, 23 from our mother and 23 from our father. They contain all of our genetic information. And in malignant diseases, you can have major abnormalities in the chromosomes of the cancer cells. Not in the rest of your body, just in the cancer cells. And they happen because of errors that are made when the cells are replicating their chromosomes.                                                                 

So, in CLL, there are four common abnormalities that we look for in a test called FISH, and they tell us a lot about the patient’s prognosis. And there’s one in particular that we look at that has a major impact on our decision making, and that’s a deletion on Chromosome 17.

So, a missing piece of Chromosome 17. And the reason that that’s important is it tends to be an aggressive form of CLL. It also does not respond to chemotherapy, or if it does, the responses are very, very short-lived. So basically, that’s a contrary indication to receiving chemotherapy for your CLL when you should receive another form of therapy if you have a 17-P deletion.

And then, finally, we look at a type of – we look for individual gene mutations in the cells. And that’s different from IGHV mutational status, although the names are kind of similar.

So, in CLL, there are numerous genes that can be affected by mutations that alter the function of the gene. In some cases, it makes the gene non-functional; in some cases, it changes the function in some way that perturbs the normal functioning of the cell and contributes to the malignant transformation of that cell.

So, the most important one, again, relates to a gene called TP-53. So that’s the gene that is deleted if you lose a piece of Chromosome 17. It’s located on the P arm of chromosome 17. If you mutate that gene, it has the same consequences essentially for the cell as if you delete it by deleting a piece of the chromosome. And the two often go together, so you’ll have a 17-P deletion and a mutation of the TP-53 gene on your other Chromosome 17. Because remember, you have two chromosome 17s. So, if you lose both, it may be even worse than only having one. However, it does seem that if you only have a mutation on the TP-53 gene, but you don’t have a deletion on Chromosome 17, that the responses of those patients to chemoimmunotherapy are still really poor.

So, it’s very important to find out, do you have a TP-53 mutation as well as do you have a deletion on Chromosome 17 before you embark on treatment, particularly if that treatment is going to be chemotherapy. So, those are the three things that we look for before    we start any patient on therapy.

Health Exercises to Tap Into Your Resiliency

The current pandemic the world is facing has caused a whirlwind of emotions, especially for immunocompromised patients, including cancer patients. Every feeling, from grief to sadness, and anger to hopelessness, has been magnified as our minds take a toll and our level of vulnerability has grown.

Right now, we are doing the best we can with the knowledge, experiences, and tools that we have. A couple of ways to utilize these tools and stay grounded during this time include meditation and exercise. Below are a list of resources, including ones I have personally used, that can be utilized to build inner and outer strength.

Walking

A great form of exercise that can be done anywhere and doesn’t require any equipment. During your walks, take in the scenery around you. Challenge yourself by quickening your pace, going up and down hills, or see how far you can go in a specific amount of time.

Yoga

Another activity that requires little to no equipment. Find free videos on YouTube or look to see if a local studio is offering online classes. Yoga allows your mind to calm and your stress hormone levels to reduce as you focus on slower movements and breath work.

Aerobics or high-intensity interval training (HIIT)

Helps improve cardiovascular health and endurance through quick movements done in rounds and can utilize the entire body. YouTube and Instagram are great places to look for these types of exercises. You can also incorporate weights (if you have them) to make it more challenging.

Strength training or weight lifting

Beneficial for both men and women, and burns more calories over time. You don’t have to be buff to lift weights or even have equipment. Buckets filled with heavy items or other things with handles, soup cans, bags of flour, a dish towel, or even body weight can be used to break a sweat. Again, YouTube and Instagram are your places for videos. Pinterest can also be helpful by searching for “body weight exercises,” or “exercises with no equipment.”

  • Mastering the form of each exercise is crucial to avoid injuries. Form > the amount of weight you can lift.
  • Do each exercise slowly. Form a mind-muscle connection.
  • Don’t forget to breathe!
  • Stretch!
  • Favorite exercises:
    • Bicep curls
    • Tricep dips
    • Bent over rows (back)
    • Rear delt flys (deltoids)
    • Upright rows (shoulders/trapezoids)
    • Squats
    • Deadlifts: Romanian, sumo, one-leg, stiff-leg (hamstrings)
    • Calf raises
    • Military press (shoulders)
    • Chest press

Meditation

Meditation is a wonderful practice that can be used to mitigate negative thoughts and distractions. This is important any time, not just during quarantine! One of the best things about meditation: you don’t have to be perfect! Meditation takes dedication and practice. YouTube has free, guided meditations that can be done in any quiet space. Some have someone spreading, while others are simply music. Apps, such as Headspace and Calm, also offer guided meditations.