Tag Archive for: blood cancer

What Can MPN Patients Expect When Starting a New Treatment?

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What Can MPN Patients Expect When Starting a New Treatment? from Patient Empowerment Network on Vimeo.

What can myeloproliferative neoplasm (MPN) patients expect when starting a new treatment? Dr. Naveen Pemmaraju shares advice about potential issues that can occur and key points to discuss with your pharmacist to ensure optimal 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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How Is MPN Treatment Effectiveness Monitored?

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

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

 Expert Perspective: Promising Myelofibrosis Treatment Research

Expert Perspective: Promising Myelofibrosis Treatment Research

Transcript

Katherine Banwell:

We have a question from a newly diagnosed PV patient. Sharon says, “I’m just about to begin Jakafi. What can I expect?”

Dr. Pemmaraju:   

Yeah, great question, right? So, with ruxolitinib or Jakafi, I think the biggest couple of points here is, for what’s known, this is the first-in-class JAK inhibitor that we have the most experience with.

So, now we have over a decade-plus of experience. I guess general things are general, right? This is not specific medical advice. That’s not the intention of this program. But, in general, I would stick with what’s on the package label insert, and there are a couple things we know.

One is this is a highly effective drug. This drug, which we have tested now in multiple, multiple, multiple different trials in myelofibrosis, polycythemia vera, now approved in a form of graft-versus-host disease, different doses. So, I would say check the dose for your particular disease and indication. Double-check it with your pharmacist. Make sure there are no drug-to-drug interactions.

Number two, I think what’s important is that some patients on this drug can experience immunosuppression. So, that means that you may be at risk for some infections, and there’s some nice literature about that.

So, check with your doctor about that, particularly reactivation of old infections, looking out for viral infections, such as herpes zoster or shingles. And then I think the other key here is to watch out for the modulation of your disease. So, a lot of folks have big spleens, Katherine. Those shrink down. Then patients get their appetite back, they’re able to eat, and so some people can have weight gain that then goes the other way. So, these are some of the things you want to watch out for.

But, in general, read the package insert. If you have the ability to, it’s worth reading the – if you can, read the paper, right? Go read the New England Journal paper or – if you can look at that. And then make sure you talk to your local pharmacist and ask the same question there. You might be surprised at some tidbits and pearls you can pick up.

MPN Treatment: What Is the Role of Biomarkers?

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MPN Treatment: What Is the Role of Biomarkers? from Patient Empowerment Network on Vimeo.

What role do biomarkers take in myeloproliferative neoplasm (MPN) treatment? Dr. Naveen Pemmaraju defines biomarkers and explains how molecular mutations play into MPN disease risk levels and treatment options.

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.

Related Programs

What Can MPN Patients Expect When Starting a New Treatment?

 How Is MPN Treatment Effectiveness Monitored?

How Is MPN Treatment Effectiveness Monitored?

 What Are the Considerations When Choosing Myelofibrosis Therapy?

What Are the Considerations When Choosing Myelofibrosis Therapy?

Transcript

Katherine Banwell:

Dr. Pemmaraju, let’s talk about biomarker testing. Can you help us understand what biomarkers are and how they may affect treatments?

Dr. Pemmaraju:     

Yes. Biomarkers – I think that word gets mentioned a lot with really no definition, because it’s one of those words that can be whatever someone wants it to be. So, you’re right. For us, it’s a very important word in MPN. Bio meaning of life, scientific, and then marker meaning some kind of a measuring stick that has a value.

Well, there are two ways to look at biomarkers. One is the obvious, which is we have the defined big three molecular mutations. So, that’s JAK2V617F, followed by CALR mutation, followed by MPL.

Those are the big three. Those make up about 90 percent of all patients with MPNs. You’re technically not born with them, although new data suggests that you may acquire these mutations right after birth. So, those markers are important because they can be used to diagnose the disease, right? Particularly in the challenging patient. They have high platelets, you can’t tell if it’s reactive or ET. Okay, so they’re helpful with diagnosis.

Maybe some studies have shown that some of these markers can be predictive, Katherine, of blood clots. Let that research be ongoing. And then, obviously, some of these may be helpful in terms of designing the future treatments, particularly targeted therapies. So, I think biomarkers are part of our field, if you look at it that way, at diagnosis and risk stratification prognosis. But there are other factors that are starting to come out. One is there are molecular mutations outside of these big three.

So, outside of JAK2, CALR, and MPL, that are very important actually. Not everyone is checking for them. They are ASXL1 mutations, EZH2, IDH1 and 2, so on and so forth.

So, these are extended molecular markers that can be checked at some doctors’ offices that now, in the latest scoring systems, if you have one of those or more than one or two, they can elevate your risk score. So, if you have low risk or intermediate risk myelofibrosis, they may make you intermediate or high risk.

So, that may be a bit more complicated than what most people are aware of. But just so you know, there are markers that can be readily checked that can tell if your disease may be a bit higher risk than we though, say, 10 years ago.

I think other biomarkers that we look at are some of the labs that are just the regular labs that are on almost every panel, but they can tell a lot about the disease. There’s the LDH, lactate dehydrogenase. There are several markers, such as CRP and sed rate.

So, anyway, there are a lot of labs that we can check depending on where you are in your disease state that can kind of tell us a lot about how inflamed you are, how active your disease is at the moment, and then that will lead to further confirmatory tests. So, I think, yeah, in general, this is an active, developing area of research in our MPN field.

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

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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.

Related Programs

MPN Treatment: What Is the Role of Biomarkers?

 What Can MPN Patients Expect When Starting a New Treatment?

What Can MPN Patients Expect When Starting a New Treatment?

 COVID-19 Vaccination: What Do Myelofibrosis Patients Need to Know

COVID-19 Vaccination: What Do Myelofibrosis Patients Need to Know?

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 Engage in Your MPN Treatment Decisions

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How to Engage in Your MPN Treatment Decisions from Patient Empowerment Network on Vimeo.

How can myeloproliferative neoplasm (MPN) patients engage in their treatment decisions? Dr. Naveen Pemmaraju shares advice for taking a more active role to empower yourself to receive MPN care that’s best 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.

See More from Engage

Related Programs:

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

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

 MPN Treatment: What Is the Role of Biomarkers?

MPN Treatment: What Is the Role of Biomarkers?

 What's Your Role in Making Myelofibrosis Treatment Decisions?

What’s Your Role in Making MPN Treatment Decisions?

Transcript:

Katherine Banwell:    

Lately, we’ve been hearing this term “shared decision-making,” which basically means the patients and clinicians collaborate to make healthcare decisions. And it can help patients to take a more active role in their care. So, I’d like to get your thoughts on how best to make this process work.

Dr. Pemmaraju:         

This is a passion area to me. I think this is so important that  you bring this out. I think a generation or two ago, Katherine, it may have been common for there to be more of a one-way monologue, if you will, doctor to patient, and that may have been the majority of the conversation before.

I don’t see it that way anymore, and most of my colleagues don’t either. I think it should be a dialogue, as you said. It should be a back-and-forth communication, one that learns and evolves over time as any real relationship would, right? Outside in the real world. So, I think that’s important. Number two, I think trust needs to be earned, not just given.

So, that means patient and physician, and really the physician team – so, all the other members of the team – building that trust over time through frequent communication, visits, all of this. And then, finally, I think the key here is that a lot of patients always ask, “Hey, what can I do on my own?” I’ll tell you what you can do. You can be involved and read and empower yourself if you’re able to. If you’re able to and you can. Many may not be able to due to their illness or for other reasons.

But if you are able to, I think it’s great to read online. There, I just said it. Let me repeat it to make sure everyone heard that. I want you to read. I think it’s fine. Consult Dr. Google. What’s the worst that happens? The worst that happens is you find misinformation. Well, don’t keep it to yourself, right? So, Google, look up things, go to social media, see what experts in your area are talking about, go to Facebook, go to the patient groups. But remember, everyone’s case is different. Someone else’s is different from yours, and yours is different from the next. So, gather information like a sponge.

Formulate it, synthesize it in the way that only you know how to do, bring some notes, and then talk about it with me at the next visit, “Hey, I saw this on the Internet.” “Okay, great, let’s talk about that.” Or, “Hey, this new formulation of interferon is coming.” “Great, let’s talk about it.” So, gather information, sort out signal from the noise with your healthcare team. Sort that out and then move on, move on, move on. So, I think these are some of the aspects of what’s called shared decision-making. No longer a monologue, one-way street. Let’s have a dialogue, let’s have a partnership, let’s figure out a way to empower each other in this journey.   

I’m a big fan of patients being empowered to ask anything that comes to mind. And again, that’s why I love this discussion because maybe there might be some people out there who are shocked, frankly, at what we’re talking about here. I think it’s great to do what you said. Yes. I think do your research, online or otherwise. Come up with a list of questions. Bring – if you’re able to, of course. If you have the ability to, bring one person with you. Or nowadays, on the telehealth, we put one person on through the phone during the pandemic time.

And then – yeah. I mean, yeah, sure, just you hear about something, ask about it. The worst thing that your doctor says is, “Hey, that’s only a research test. That’s not available.” It doesn’t hurt to ask. And it may help to lead to other discussions. I think it’s also a good idea to get a second or a third opinion if you need to. There, I said it. It’s your body, it’s your life, it’s your choice. I think, yes, advocate for yourself, because at the end of the day, who else is going to do that?

Who Is on Your MPN Healthcare Team?

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Who is on Your MPN Healthcare Team? from Patient Empowerment Network on Vimeo.

Who are the key members of the myeloproliferative neoplasm (MPN) healthcare team? Dr. Naveen Pemmaraju discusses the team members he recommends in the modern era for optimal care for patients with polycythemia vera (PV), essential thrombocythemia (ET), and myelofibrosis (MF).

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.

See More from Engage

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How to Engage in Your MPN Treatment Decisions

How to Engage in Your MPN Treatment Decisions

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

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

 Primary vs Secondary Myelofibrosis: What's the Difference?

Primary vs Secondary Myelofibrosis: What’s the Difference?

Transcript:

Katherine Banwell:    

When a person is diagnosed with an MPN, they have a whole healthcare team. Who is typically on that team?

Dr. Pemmaraju:         

Well, it’s interesting. Yeah, that’s evolved over time.

It used to just be patient and their local oncologist, right? And the oncologist office has become a very busy place with mostly solid tumors. So, breast, prostate, colon, and then maybe a few scattered patients in most practices with blood cancers. Obviously, blood abnormalities are common with platelets and anemia and all that, but to actually have an MPN patient in the general hem/onc practice is actually quite rare. Right? These diseases are 4 to 5 out of 100,000 people.

Now, fast forward to the modern era. I think this is important. I think now, what I personally encourage – and obviously I’m biased because I’m here at the academic center. But I really think that patients with rare blood cancers such as MPNs should be co-managed. So, be seen by your local hematologist/oncologist, for sure. They know you the best. But also have a referral, if you’re able to and have the resources and ability to travel, to an academic center where you can see a blood cancer specialist such as me or my colleagues, as I only focus on blood cancer.

So, I’m not seeing patients with a solid tumor. So, local oncologist. If you can have a blood cancer expert as part of your care, it doesn’t have to replace the care. And then to have a member of the nursing allied professions – nursing and APP, advanced practice providers – is really becoming essential to help with acquiring the prescriptions from the specialty pharmacy, prior authorizations, teaching of the injectables, such as Interferon, figuring out enrolling on clinical trials.

So – and then, if a patient, young and fit, with myelofibrosis, you’ll want to be consulted with a stem cell transplant doctor. And then, finally, as if that wasn’t enough, I think a good pharmacist team is important nowadays to go over the drug-to-drug interactions, side effects. It’s not just about the JAK inhibitors but all the other medicines – antibiotics and everything else – that may be a bit unique to the MPN patient compared to the general cancer patient.

Myeloproliferative Neoplasms Defined: What Are ET, PV, and MF?

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Myeloproliferative Neoplasms Defined: What Are ET, PV, and MF? from Patient Empowerment Network on Vimeo.

What are essential thrombocythemia (ET) , polycythemia vera (PV), and myelofibrosis (MF) exactly? Dr. Naveen Pemmaraju explains how each of these blood disorders manifests along with the symptoms observed in these MPN patients.

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.

See More from Engage

Related Programs:

Who Is on Your MPN Healthcare Team?

Who Is on Your MPN Healthcare Team?

 How to Engage in Your MPN Treatment Decisions

How to Engage in Your MPN Treatment Decisions

 How to Play an Active Role in Your MPN Treatment Decisions

What Are the Considerations When Choosing Myelofibrosis Therapy?

Transcript:

Katherine Banwell:    

Can you help us understand the differences between ET, PV, and MF?

Dr. Pemmaraju:         

Yeah, this is very important because we toss these words around as if there’s some big definition that was given, and oftentimes, that never happens. So, let’s pause to do that. So, this goes back to the 1950s when William Damashek, who really postulated the modern MPDs at that time as they were known – myeloproliferative disorders – really thought that there were four diseases that were similar at some level and then presented differently. So, that’s polycythemia vera, essential thrombocytosis, myelofibrosis, and CML, chronic myeloid leukemia.

Then, as the modern era comes in, CML is divided off because of the Philadelphia chromosome, BCR-ABL, which is present in 100 percent of those patients.

So, now we know CML is its own thing. And now we have the big three, sort of non-Philadelphia chromosome MPNs, as they’re now known, because neoplasm – cancer – instead of disorder. Within the subtype, and this is important, the subtypes that you mentioned are the most common.

So, polycythemia vera – poly meaning many, cythemia, cells, vera is Latin for true.

This is the designation for the patient who has a higher than expected blood red cell mass or hematocrit. And it actually, interestingly, Katherine, most patients with P vera have an increase in all three of their blood lines, so the red cells, hemoglobin, hematocrit, platelets, and white count. Those patients with PV are especially at risk for both bleeding and clotting, transformation to myelofibrosis, and even transformation to acute leukemia in maybe 5 to 7 percent of patients.

So, the usual treatment there, Katherine, is to bring off the blood mass. That’s the phlebotomy.

And then in the patient who is above the age of 60 or has a prior blood clot, to give some form of chemotherapy, hydroxyurea (Hydrea), or interferon, for example.

Now, the second grouping is ET, essential thrombocytosis. Again, this word vera or essential, meaning not reactive, not benign, not from a regular cause like a surgery or a trauma or an inflammation. So, it means a cancerous cause, an autonomous cause, something that’s coming on its own.

Thrombocythemia or thrombocytosis, meaning too many platelets. So, usually, patients with ET have too many platelets as their predominant manifestation. But again, as with P vera, patients can get into problems with that. Very, very high platelets, usually a million-and-a-half or higher, can actually lead to bleeding. Not necessarily clotting, but extra bleeding. And then patients with any platelet levels, because the platelet level doesn’t exactly correlate, can have either bleeding or clotting. So, that’s usually the predominant factor. And again, the underlying problem with these MPNs is that they can transform to the other ones – PV, MF, even acute leukemia.

And then, finally, myelofibrosis, which we could spend the whole hour on just by itself, is the more advanced state out of these.

So, it can either arise out of the PV or ET or stand alone. And really here, this is an advanced bone marrow failure state with bone marrow scarring or fibrosis. And now, usually, most patients, their blood counts, rather than high are now low because the bone marrow is unable to produce enough cells. And then, therefore, the sequela of the disease – anemia, thrombocytopenia. So, low blood, low platelets.

Then you need transfusions. The liver and the spleen get larger because they remember how to make blood cells. People can have a wasting away appearance. And then here, more than the PV or ET, this is more of an acute disease for many where if you have intermediate to high stage, these patients can transform more readily to leukemia and have a decreased overall survival.

Is the COVID-19 Vaccine Safe and Effective for MPN Patients?

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Is the COVID Vaccine Safe and Effective for MPN Patients? from Patient Empowerment Network on Vimeo.

Is the COVID-19 vaccine effective and safe for myeloproliferative neoplasm (MPN) patients? Dr. Naveen Pemmaraju shares information about the safety and effectiveness of COVID-19 vaccines and specific medical data researchers are watching for MPN and blood cancer patients.

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.

See More from Engage

Related Programs:

Myeloproliferative Neoplasms Defined: What Are ET, PV, and MF?

Myeloproliferative Neoplasms Defined: What Are ET, PV, and MF?

 Who Is on Your MPN Healthcare Team?

Who Is on Your MPN Healthcare Team?

 How to Play an Active Role in Your MPN Treatment Decisions

How to Play an Active Role in Your MPN Treatment Decisions

Transcript:

Katherine Banwell:    

We’re all hearing that the COVID-19 vaccine is safe, but how effective is it for MPN patients?

Dr. Pemmaraju:         

Well, I believe that this is one of the most important issues of our time.

I think the way I would approach the COVID-19 question is, one, is we know that if our patients contract the virus, that can be deadly in actually many of our patients. So, I think it’s actually important to remember that the virus is still out there and that getting the virus is potentially very life-threatening, not only for the general population but for our patients.

For the vaccines, I kind of have two stories to tell you. So, one is my own anecdotal experience in the clinic where it has been surprisingly and remarkably well-tolerated in most of our patients. This is both the mRNA vaccines and as well as the J&J vaccine. And so, overall, we’ve seen a very minimal amount of allergic or other reactions.

I think the most important part, as you said at the top, is for specific medical advice, we need to be talking to our own providers. But I think for our MPN patients, we’re giving some caution, looking at the blood counts, what chemotherapy folks are on. But, in general, I’ve been happy with that rollout.

Now, for the effectiveness of them, sure. That’s a question of ongoing research. There are some data that’s coming out, particularly in CLL and other leukemias that – correct – maybe some of our immunocompromised patients, as you would expect, may not be able to mount the appropriate response. But all that data is moving and fluid, so we’ll see.

And then I think the other point here is with this question of the virus itself and maybe some of these vaccines having a signal for increased blood clots or coagulopathy.

This is something I think we have to follow in our MPN community only because our patients are already at a high risk for both bleeding and clotting. So, the virus itself, COVID-19, post-syndrome coagulopathy, possible side effects – idiosyncratic and rare, for sure, from these vaccines that can lead to a vaccine-induced thrombotic state. I think these are some of the factors that we have to watch out for. So, in general, we don’t yet know the exact answer for each patient, PV, ET, MF, how effective the vaccine may be.

But we are encouraging everyone to go for it unless there’s an obvious contraindication.

How to Make an Informed MPN Treatment Decision

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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.

See More from Engage

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What’s YOUR Role in Making Myelofibrosis Treatment Decisions?

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COVID-19 Vaccination: What Do Myelofibrosis Patients Need to Know?

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!

How Can CLL Patients Get the Best Care No Matter Geographic Location?

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For chronic lymphocytic leukemia (CLL) patients, treatment access has been limited for some Black, Indigenous, and People of Color (BIPOC) patients, non-native English speakers, and those who live in rural areas due to lack of access to technology devices, stable Internet access, and other socioeconomic factors. And though more needs to be done to improve understanding of racial variances in CLL biology and other outcome factors, the COVID-19 pandemic has actually brought about some unexpected changes in access to CLL treatment.

Patient Empowerment Network is working to help improve health outcomes for underserved CLL patients through the Best CLL Care No Matter Where You Live program. Let’s take a look at key learnings from a powerful self-advocacy vignette to advice from an expert panel with the goal of helping CLL patients on their health journeys to gain confidence around treatment decisions no matter geographic location.

CLL Patient and Care Partner Advice

Cancer patients and care partners may encounter some obstacles to patient care and access to clinical trials. But a variety of technology, language, patient monitoring, and support resources have emerged to aid in patient care including:

  •  Telemedicine options including televisits via smartphones, tablets, and computers
  •  Patient portals for requesting prescription refills, reading test results, and scheduling appointments for cancer care
  • Translation services via an in-person interpreter, remote interpreter, and multi-language translation of information for cancer patients
  • Remote monitoring devices for blood pressure, heart monitoring, sleep tracking, and more
  • Online patient support resources including cancer treatment information and online patient support groups

According to Dr. Kathy Kim from UC Davis School of Medicine, “..so there’s been a huge upsurge in the number of hospitals and clinics and practices that have been able to implement telehealth with their patients. But there are other tools that again, have been in development that are now starting to take off under the last year, and those are remote patient monitoring devices, these are either specific medical devices, like blood pressure machines, glucose meters, some heart monitors, sleep monitors…devices that check your oxygen saturation. So, there are many medical devices that are for use in the home, that are either covered by insurance or people can buy them at the drugstore, and what has really come about this year is the ability to connect the data from the device you have in your home to your provider, so that’s been in place, but we really haven’t implemented it very many places, and now lots of places are allowing that connection to happen. So, the patient can use the device in their home and get it connected to the and have it sent to the hospital or to their doctor, so their doctor can be watching the data and also monitoring them, so that’s one really wonderful piece of progress that we’ve had in the past year.” And additional tools to help improve patient care will continue in the future.

CLL Patient Self-Advocacy Experience

Sharing the patient perspective, CLL patient William Marks discusses some of the details of his patient journey. From his diagnosis to getting connected to Dr. Awan via televisits during the COVID-19 pandemic, William shares the value of getting a second opinion, lifestyle improvements he made, and things he found helpful in taking charge to get the best CLL care possible.

William took charge of his care when he didn’t feel comfortable with his first opinion, “I had an oncologist, they wanted to do a treatment on me that I really didn’t agree with, and I found a doctor who first started out saying, “We don’t want to do this right now, we just want to kind of see what happens” and then to me, it turned out successful.”

And William took a proactive approach to his care, “I started from the beginning, I started doing everything. I started reading everything I could, I started trying to research everything, I changed my eating habits, I lost weight, I did everything I could personally, but I knew that the CLL that I had, I could not conquer by myself and alone. And so that’s when I knew, you can do everything you can, you can take all the herbs and supplements and everything you can, but then CLL is something that you really like you said, you need someone who specializes in it to know…but I’m really doing real well after six years, and I do believe that Dr. Awan saved my life.”

If you or a loved one is a CLL patient, tune in to the webinar replay to learn helpful advice for improving access to the best and latest CLL treatments no matter location or circumstances, receiving free CLL remote consultations, taking an active role in your care, working as a team with your CLL specialist, and supporting the CLL patient journey.

Resources

Increasing Treatment Access for Every CLL Patient No Matter Location

How Can CLL Patients Avoid Pandemic Challenges Without Compromising Quality of Care?

What Multi-Language Technology Innovations Are Available for Cancer Patients and Families?

What Key Questions Should CLL Patients Ask About Digital Tools Born Out of COVID?

How Can CLL Patients Mitigate Distance and Technology Barriers to Care?

Sources

Stephanie Williams, MD , Amy A. Ayers, MPH , Michelle A. T. Hildebrandt, PhD , Lorna H. McNeill, PhD , Christopher R. Flowers, MD, MS (2020). Strategies for Overcoming Disparities for Patients With Hematologic Malignancies and for Improving Enrollment on Clinical Trials. Oncology. Accessed May 26, 2021. https://www.cancernetwork.com/view/strategies-for-overcoming-disparities-for-patients-with-hematologic-malignancies-and-for

Christopher R. Flowers, MD, MS and  Barbara Pro, MD (2013). Racial differences in chronic lymphocytic leukemia: Digging deeper. Cancer. Accessed May 26, 2021. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3834561/

Treatment Approaches in AML: Key Testing for Personalized Care

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When it comes to Acute Myeloid Leukemia (AML), genetic testing (or biomarker testing) is essential in helping to determine the best treatment approach for YOU. In this program, AML expert, Dr. Naval Daver reviews key decision-making factors, current AML treatments and emerging research for patients with AML.

About the Guest:
Dr. Naval Daver is an Associate Professor in the Department of Leukemia at The University of Texas MD Anderson Cancer Center. More about Dr. Daver: https://faculty.mdanderson.org/profiles/naval_daver.html

Expert Advice for AML Patients When Making Treatment Choices

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Expert Advice for AML Patients When Making Treatment Choices from Patient Empowerment Network on Vimeo.

What are key factors to consider for acute myeloid leukemia (AML) patients when making treatment decisions? Dr. David Sallman reviews important considerations and their impact on treatment choices, and shares questions patients should ask their doctor to receive optimal care. 

Dr. David Sallman is an Assistant Member in the Department of Malignant Hematology at Moffitt Cancer Center where he specializes in myelodysplastic syndromes (MDS), acute myeloid leukemia (AML) and myeloproliferative neoplasms (MPN). Learn more about Dr. Sallman, here.

See More From Engage AML

Related Resources:

 

How Molecular Testing Has Transformed AML Treatment Options

Transcript:

Katherine:

When making a treatment choice, what are three key considerations for AML patients?

Dr. Sallman:

Yeah, so I think the initial probably two main questions are is the patient fit or non-fit, and that’s really an evolving definition. I think historically, we had this magical age if you’re less than 60 or less than 65 years of age, but we’ve really gone past that significantly. So, does a patient have significant medical problems, decreased performance status that we would not think about intensive therapy is one of the main questions. I think what feeds into that. And the other big question is what is the underlying mutations that the patient has which really gives us a prognostic risk from a disease perspective.

With certain mutations and subgroups being much more sensitive to intensive chemotherapy and other groups really where that option is poor irrespective of age. So, I think the most important thing is how does the patient look, what is their fitness level, and what are the underlying cytogenetic and molecular changes that impact their disease.

I think third, of course, is really involving the patient in their preferences, because I think some of these can really be a decision between several options.

Katherine:

What’s the role of the patient in making treatment decisions?

Dr. Sallman:

Yeah, the patient has to be central. I’m really hoping that we’ve moved a long way from the paternalistic practices in the past.

I think there are still many instances where there’s sort of a clear best option from a medical perspective, but there’s a lot of social logistics. If you’re getting intensive therapy, as an example, you’re going to be in the hospital four to five weeks, what’s your support system? What financial, other impact factors, all of these things come into play. I think it’s a tough group. I think the patients that are, let’s say, 60 to 70, because responses are somewhat similar across non-intensive and intensive options, I think there’s the question of is the goal long-term, is the goal quality of life, and I think all of those really are impactful.

I think it can be very challenging to go through all of the specific numbers and how a patient comprehends that or not, but really trying to draw out is their goal long-term, is their goal quality of life, give them the pros and cons of the potential options in that setting, and then real-time discuss that as we go. I think when they have that buy-in from their goals, it’s important.

These are complicated regimens and patient compliance and follow-up and all that are really critical to the overall safety and good outcomes of these patients.

Katherine:

Are there questions that patients should ask in their proposed treatment plan?

Dr. Sallman:

Yeah. I think it’s always important to discuss what options. I think any time there’s a one-option, if there is a one-option, why? Maybe because standard of care in this group is so good that it’s not really reasonable to necessarily offer a main alternative regimen. I think it’s important to understand as much of the disease as possible. If you’re choosing this regimen, why are you doing it? I think asking about the mutations is important, although that’s a very complicated thing to explain. Some patients like it and some patients don’t, and I think you have to do that in your team-based relationship.

I think always asking about clinical trials is an important question to ask. Should they be getting a second opinion? These are overall very rare diseases, and we highly favor an initial consultation at an academic center that specializes in this. I’d say a majority of my patients are ultimately treated in the community. But especially given that the regimens are becoming much more complicated, the intensity of watching their counts, managing side effects, titrating medications, it’s really great to have a team-based model between academic and community centers and that can’t really ever happen if they never come to us. As much as possible for that to occur I think is important as well.

How Molecular Testing Has Transformed AML Treatment Options

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How Molecular Testing Has Transformed AML Treatment Options from Patient Empowerment Network on Vimeo.

How has molecular testing impacted approaches to acute myeloid leukemia (AML) therapy? Dr. David Sallman explains how molecular testing has transformed AML care, including a discussion of risk assessment and the role of next-generation sequencing (NGS) in tailoring care for each patient. 

Dr. David Sallman is an Assistant Member in the Department of Malignant Hematology at Moffitt Cancer Center where he specializes in myelodysplastic syndromes (MDS), acute myeloid leukemia (AML) and myeloproliferative neoplasms (MPN). Learn more about Dr. Sallman, here.

See More From INSIST! AML

Related Resources:

 

 Understanding AML Induction and Consolidation Therapy

Transcript:

Katherine:

How has molecular testing changed the landscape of therapy for AML?

Dr. Sallman:

Yeah, it’s really transformed it, and it’s really a constantly evolving paradigm. We have updated classifications; most people utilizing the ELN system.

So, based on both cytogenetic and molecular factors, you can ultimately go into good risk, intermediate risk, adverse risk. In general, for fit patients for good risk, we focus on curative intent, ideally with chemotherapy alone. For intermediate and adverse, typically we’re incorporating allogeneic stem cell transplant. So, that’s one of the main things that really guides treatment really from the beginning and throughout.

Then, I think really where it’s evolving is personalized therapy. So, it’s really not a one-size-fits-all treatment paradigm, it’s you have mutation A, B, you’re this age, this fitness, and we put all those things together to ideally come up with the best treatment plan for the patient.

Katherine:

Is molecular testing standard following an AML diagnosis or is this something that patients should ask for?

Dr. Sallman:

It definitely should be standard and I think the challenge is when you say the word “molecular,” it means lots of things to different people. I think in the community, as targeted medications were first approved, so this was with FLT3 inhibitors, subsequently IDH1 and IDH2 inhibitors, I think people are realizing yes, we have to send these sequencing panels, but there’s a potpourri of choices from a lot of different commercial vendors.

Really the key and one of the main messages we try to get across is you really have to assess for both FLT3 as well as really a comprehensive next-gen sequencing panel in order to cover all of the relevant genes at diagnosis and likely at other time points such as relapsed or refractory disease.

So, there’s no question, it’s standard, although unfortunately, it’s still not uncommon where the comprehensive panels are not sent and you’re left with somewhat not a complete picture for your patients. Since we’re personalizing everything, it’s really quite critical to have these data.

Katherine:

Yeah. How does inhibitor therapy work to treat AML?

Dr. Sallman:

So, you have a gene that turns on and turns off as we go, but with the mutation, it’s basically turned on all the time. Then, you can have targeted pills that basically turn it off. Most commonly this is done, there’s the active

or energy site for these different genes, and so these therapies can really specifically block that. I wouldn’t say that’s the only mechanism. There are IDH1 and IDH2 inhibitors and they’re very specific for those mutations. Each mutation may have a little bit different end biology. In general, you have mutation A, and we’re going to turn it off with drug that inhibits A.

Treatment Advances for Aging AML Patients

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Treatment Advances for Aging AML Patients from Patient Empowerment Network on Vimeo.

What are the latest acute myeloid leukemia (AML) treatment advances for elderly patients? Dr. David Sallman shares details about new therapies that he’s excited about and their impact on care for all AML patient groups.

Dr. David Sallman is an Assistant Member in the Department of Malignant Hematology at Moffitt Cancer Center where he specializes in myelodysplastic syndromes (MDS), acute myeloid leukemia (AML) and myeloproliferative neoplasms (MPN). Learn more about Dr. Sallman, here.

See More From Engage AML

Related Resources:

How Molecular Testing Has Transformed AML Treatment Options

Transcript:

Katherine:

Okay. When it comes to AML research and emerging treatment options, what specifically are you excited about?

Dr. Sallman:

Yeah. So, I think probably the most exciting changes have really been in the overall elderly AML setting, although I think are really broadly impactful across patients.

So, the standard has been hypomethylating agents for a long time. This paradigm has recently changed with the FDA approval and now full approval of venetoclax in combination with hypomethylating agents, but we’re still talking about immediate overall survival of 14 months in the Phase III setting.

There are lots of exciting drugs, and I think this is really where the spectrum of myelodysplastic syndrome and acute myeloid leukemia comes into play.

So, I really think in elderly AML, we’re moving towards more triplet type combinations to really ideally move the field forward. That adds levels of complexity, toxicity from additional therapies, but we’re really hoping to truly move that survival curve even more.

There’s a lot of HMA, doublet, triplet combinations that are exciting and I think that’s really where the field is going.

I think at the same time in the failure setting, particularly, let’s say, in the HMA venetoclax failure setting, there’s really a lack of almost any effective therapies. We’re really hoping that novel cellular and immunotherapies will hold significant promise in this group. There are numerous trials that are being considered in this space, but I’m hopeful for it.

What AML Patients Should Know About the COVID-19 Vaccines

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What AML Patients Should Know About the COVID-19 Vaccines from Patient Empowerment Network on Vimeo.

What are some key points for acute myeloid leukemia (AML) patients to understand about the COVID-19 vaccines? Dr. David Sallman shares advice for patients who are considering the COVID-19 vaccine.

Dr. David Sallman is an Assistant Member in the Department of Malignant Hematology at Moffitt Cancer Center where he specializes in myelodysplastic syndromes (MDS), acute myeloid leukemia (AML) and myeloproliferative neoplasms (MPN). Learn more about Dr. Sallman, here.

See More From Engage AML

Related Resources:

 

Understanding AML Induction and Consolidation Therapy

 

Transcript:

Katherine:

Are the COVID-19 vaccines safe for AML patients, and how does the vaccine affect treatment, if at all?

Dr. Sallman:

Yeah, I think that’s a great question. I think it’s really a rapidly evolving day-by-day update. For example, at our center, we vaccinated a high number of patients and we’re actually in a study trying to understand what their antibody production. So, I think the question is less ‘is it safe or not safe,’ but more is it as effective or worthwhile based on patients that have low blood counts.

I think, in general, if a patient is in remission, either post-therapy or on maintenance-type therapy that has a relatively preserved white count and is it’s very reasonable to utilize it, I think we still have the caveat of is it as effective, of course we don’t know that clearly since all the large trials, these patients weren’t really included. But in general, if you’re not severely leukopenic, we are vaccinating a high percentage of patients that we’re monitoring closely, but anecdotally, we’ve not had significant different adverse events from our perspective.

Patient Profile: Barry Marcus’ Multiple Myeloma Journey

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Patient Profile Barry Marcus’ Multiple Myeloma Journey from Patient Empowerment Network on Vimeo.

Empowered patient, Barry Marcus, shares his multiple myeloma journey from searching for a diagnosis to how he is managing his disease today.

Transcript:

In May of 2014, I was signed up to do a charity bicycle ride in Portland for MS with my cousin, her husband, and her son, who has an MS. And about a week before the ride, I started feeling exhausted for no apparent reason, terrible fatigue. All I could really do was lay on the couch and this was completely anomalous for me. I didn’t really have any other symptoms. I didn’t have a cough or a fever, chills, sweating, anything. 

After about three or four days I got an appointment with my primary care physician. I went in to see him and he did a few blood tests and the blood tests all came back normal. And he was baffled, he really didn’t understand what was going on. I think he did a test for zika virus, that was going around at the time. I asked him if I could have mononucleosis and he was basically pretty stumped, and really didn’t have any recommendations to go forward. 

So, I went home, I got back on the couch, and when I still felt the same way after a week, I called up another appointment and found that he was on vacation. So I went to see one of his colleagues and she did some more blood tests. And at that visit I said to her, “When someone starts feeling like this just out of the blue your mind goes to very dark places”. I said, “Could I have something like leukemia?” and she said, “Oh no”. And that was that.  Basically I felt cut adrift and the message was it’s too bad to be you. There’s another version of that that I won’t say.

And then after about two weeks, I started to feel better. The fatigue went away, I got back on my bike, and was able to go to work and be productive. So I just sort of shrugged my shoulders that this is just one of those strange things that doctors aren’t able to explain.

Then, probably about February or March of 2015, I started getting some pains in my neck. If I pulled over a sweatshirt and it caught on my head, I’d get a pretty serious pain in my neck. And as a couple of months pass, this pain got worse, especially when I rode my bike. And I thought well maybe it’s from all this bike riding and having my neck in a strange position. 

So I didn’t really follow up at that time. About maybe in June, I went back to my primary care physician and told him about my neck and he sent me for an x-ray at that time. No other imaging, just an x-ray. And he told me that I had minor disc degeneration in my neck and that physical therapy would probably take care of it. So he sent me the physical therapy, and I did physical therapy for a couple of weeks and this pain in my neck did not get any better at all. And then one night I was walking my dog, and I got a, how can I describe it, it was a numb feeling down my left arm. It wasn’t really painful, felt a little electrical maybe, and I knew that wasn’t a good thing. 

So I called up the advice nurse, she had an on-call physician call me back. He said you have to go in for an MRI and I’m going to set that up for you in the morning. In the morning, I went for the MRI and when I got out of the tube I went over to the technician who’d done the test and I said what do you see? And his face turned ashen, basically. And he said well I don’t interpret these you know, I just run the machine and you need to see your doctor. It turned out I had a solid tumor in my neck between C4 and C5, about the size of a walnut, and it was pressing on my spinal cord. And I got a call shortly thereafter from my primary care physician who said you need to go see a head and neck specialist and I’ve got that set up for you. And it went in to see him and he said yeah I’m sorry to tell you that you have what appears to me to be multiple myeloma. 

So at that stage, I’m sure that I had had this for about a year. And in addition to the tumor in the neck, I had I guess they call them lytic lesions, I had what are essentially smaller tumors in my ribs and on my sternum. They did a PET scan and it’s pretty widespread. And they said the first thing that you need to do is to get radiation therapy to get rid of this tumor in your neck. The head and neck specialist that I saw said that it was very likely that we could get rid of the tumor and he said oh and you’ll be back on your bike in no time. 

I felt like that was maybe true or maybe not true, that he was doing his best to encourage me that this wasn’t the end of the world, and of course, I was devastated. I went for radiation therapy for the tumor, I had ten treatments. To make a long story short, the radiation was very successful. I’m going to have to otherwise describe it as it melted the tumor away. It was gone and the next phase was going to be chemotherapy. 

I was assigned to an oncologist through my health plan, and I don’t want to be culturally insensitive in talking about this, but his English was not his second… first language. And I had a very hard time understanding him, especially on phone calls where I couldn’t understand him at all. I was feeling pretty down at that point because my primary care physician hadn’t followed up with me, and now I have an oncologist that I’m having problems communicating with, and they provided me with what seemed to me like a cookie cutter – this is the plan that we put everybody through type of chemotherapy.

I wanted to find out much more about it, so I’m very fortunate to have a sister who’s an MD and at the time, before her retirement, she worked at Montefiore Hospital in New York. I called her and she said well I’m good friends with an oncologist here and I want you to talk to him, which I did and his name is Shalom Kalnicki at Montefiore. And he became what we started to call my New York team and I bounce things off of him. The first thing he said was you really do need to get a second opinion and I’m going to set you up at another health provider that I have a lot of confidence in, that I’ve known people there for years. He said I wouldn’t take the chemotherapy that they’re suggesting until you talk to them. 

Well that was…I got an appointment for the second opinion, but it was about a month away. That was an agonizing month because I knew I had these lesions, that I had myeloma, and I wanted to  jump on it and get immediate treatment, but I didn’t. I waited. I went in and the physician I saw at the second Health Plan, I really liked a lot and she spent a lot of time with me. She looked at some of the other tests that had been done, and basically said yeah your health plan is on the right track, I would go ahead and start it. So I did, but again I frankly felt that if I stayed with my health plan and they were going to kill me.That I was sort of a cog in the wheel, that they basically treated everybody the same way, whether that’s true or not, I don’t know, but that’s how I felt.

And as it happens, August of 2015 and I was turning 65 in September. And it turned out that turning 65 and becoming medicare-eligible, was what they call a qualifying event to change your health plans outside of Open Enrollment. I have to credit CalPERS for that because I went to see them about what my possibilities might be ‘cause I didn’t want to wait till January to get a new Health Plan through Open Enrollment. A woman there was extremely helpful and she told me this information, and so I did change in September I got onto a new health plan that I had been in many years ago that I really liked. What CalPERS had removed from their list of approved providers because of cost, but at that point, they were back. So, I got back in this plan that I’ve been in many years ago, got hooked up with a terrific hematologic oncologist September 1st, and started working with him.

I wound up getting an autologous stem-cell transplant in February of 2016, about 5 years ago, and it produced…I was in the hospital for two weeks. The other health plan that I had been in, if I had a stem-cell transplant through them, they were going to send me 90 miles away and it was an outpatient procedure. I would have had to stay in a rental apartment for 30 days. So, I felt really good about changing health plans. That’s a piece of advice I would give to people is to really do some research and find out in your area where the best providers are, who they are, and see if you can hook up with them. 

So after the stem-cell transplant, I had what they called a very good partial response. I was in remission for a year-and-a-half, at which time I didn’t need to be on any maintenance medications and felt great. I got back on the bike doing, you know, up to 50-mile rides and it was good.

But after a year-and-a-half, that was 2017, I relapsed and I had to go back on a chemotherapy regimen that was oral drugs. It was a 3-drug regimen and it kept my myeloma numbers down pretty significantly. Then I would say about a year ago, that regimen stopped working, which is very common, that I came to learn, in myeloma patients that you can go through many many many different treatment regimens during the course of your illness. 

So about a year ago, my oncologist switched me to a different regimen that required infusions. So now I’m on IV infusion 3 out of 4 weeks a month and they’re very, very effective on what I would call complete remission. These are Kyprolis, Darzalex, and Dexamethasone. The worst side effect is neuropathy, which is also I’ve learned very common in myeloma treatment. Most people get neuropathy. Mine’s not too bad and it’s mostly in my feet and doesn’t prevent me from riding or walking and doesn’t affect my balance, so I feel, again, pretty fortunate there.

We’re going to stay on that regimen until it too stops working which seems to be inevitable, but I’m very encouraged by lots of the research going on for new myeloma treatments. So I guess, most people know there’s no cure, but they call it manageable and that brings me to the present.

Read more patient stories here.