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Cancers FAQ Multiple Myeloma Specialist

How Does Sugar and Soda Affect Cancer Patients

Navigating the Sweet and Bubbly as a Cancer Patient

Dr. Urvi Shah Shares the Impact of Sugar and Soda on Cancer Patients

As you navigate your cancer journey, questions about diet often bubble to the surface. Dr. Urvi Shah, is a board-certified hematologist-oncologist at Memorial Sloan Kettering and a Hodkin lymphoma patient. Dr. Shah led a clinical trial studying the effects of a plant-based diet on cancer patients. She sheds light on the relationship between sugar, soda, and overall diet. In this interview, Dr. Shah provides insight into the effects of diet on cancer.


This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.


Do diet sodas increase the risk or progression of cancer? 

Dr. Shah: When we talk about artificial beverages or sugar-sweetened drinks, there’s also been a lot of data around aspartame and some of these things in terms of drinks. The data is a bit mixed, where the recent findings from some groups have suggested that it might be a carcinogen, and others have said that the data is not enough to call it that. I think irrespective of whatever that is, drinking those drinks has not led to patients actually having a lower BMI or losing weight in itself. I think that overall, trying to avoid either artificial or sugar-sweetened beverages is important.

Whether sugar feeds cancer is a very common thought that patients propagate.

Dr. Urivi Shah

Should sugar be avoided to reduce cancer progression and risk?

Dr. Shah: Whether sugar feeds cancer is a very common thought that patients propagate. I think the answer is somewhat nuanced or lies in between. When we think about sugar, sugar is a refined carbohydrate.

Carbohydrates, in general, are a food group that we shouldn’t be excluded just because we are worried about the risk of cancer. There are complex carbohydrates, like whole grains, that are actually associated with reduced cancer risk in many population studies. It is important to include complex carbohydrates in one’s diet and not think about excluding those.

Simultaneously, refined carbohydrates like sugary drinks, sugar-sweetened beverages, those are associated with inflammation, insulin resistance, obesity, and risk of cancer. I think that when we’re thinking about sugar, yes, we want to limit the sugary drinks, the processed foods, the cakes and cookies, and things like that and reduce it. 

What is the daily recommended amount of sugar?

Dr. Shah: One fun fact is that the US population on average eats about 17 teaspoons of sugar a day. That’s on average, so there are a lot of people much higher than 17 teaspoons. Sugar is something we all don’t really need, like refined sugar. Even if we were, the recommendation would be to limit it to 6 to 9 teaspoons – 6 for females and 9 for males – per day. We’re almost 3 times above that limit already on average. You can think that many people who are way higher. 

How can patients reduce their refined sugar intake?

Dr. Shah: A lot of sugar comes in hidden foods and you don’t realize it. Cereals and things will have a lot of added sugar. It’s important to learn how to read labels and try to at least not be eating the added sugar or the refined sugar. I would not avoid complex carbohydrates because they come with the fiber. They come with vitamins, nutrients, and other things that are actually quite health-promoting. 

Do you think there is a gap between what patients and doctors are taught about nutrition and cancer?

Dr. Shah: Through my experience, I did realize that I had a lot of friends and family members trying to tell me what to eat and what not to eat. I realized that we, as oncologists and even medical professionals, don’t hear enough about this in our training, and we don’t even study this properly. It became a side hobby of mine, as you might say, where I would read about these topics quite often and found it really fascinating that there’s so much literature out there, but we’re not really translating it directly for the patients. 

I never really thought about how I could merge this side hobby with my professional career. I did a lot of research in genetics, epigenetics, immune therapies. Then when I moved to Memorial Sloan Kettering Cancer Center, first as an immunotherapy fellow and then as faculty, I actually was doing more work in CAR-T cell therapies and bispecific therapies, so different kinds of immune therapies. 

Can you tell us about the trial studying the effects of a high-fiber, plant-based diet on mGUS?

Dr. Shah: Given my interest on the side, I always knew I wanted to do at least one trial in this area and see where it goes. When I started as faculty, we developed a new prevention trial. This trial was basically looking at a high-fiber plant-based diet and the effects on mGUS or monoclonal gammopathy of unknown significance and smoldering myeloma. Can this delay risk of progression to multiple myeloma, a blood cancer? 

We do know that these precursor disorders of mGUS and smoldering myeloma increase the risk to develop myeloma, and they’re pretty common in the general population of over 3% in people over the age of 50 years. It’s not that uncommon, but we don’t recommend checking this for everybody. Once patients are checked, they are a bit anxious to know, what do we do about this? The standard of care currently is observation, meaning we do nothing until it does become a blood cancer. 

Can healthier eating and weight loss reduce the risk of cancer progression?

Dr. Shah: We do know from other studies that have looked at associations, that people who have an elevated body mass index (BMI) are twice as likely to progress to myeloma than somebody who has a normal body mass index. We already know that the risk is doubled with just BMI. What we don’t know, and we have not studied so far was, if we help patients lose weight and eat better, will that risk reduce for patients? 

What we saw was that patients actually had a reduction in body mass index of about 8% at 3 months, and they were eating to satiety.

Dr. Shah
Can you explain the study’s methods?

Dr. Shah: The premise of our study was looking at a 3-month, high-fiber, plant-based diet. We shipped the patient’s lunch and dinner. We also provided them snacks and breakfast ideas and we had a dietitian working with them very closely for 3 months.

Then we had 6 months of coaching total – 3 months during the intervention and 3 months after. We followed them for a year on the study. This was our first study, so it was only a 20 patient study looking at feasibility to understand is it possible to do this intervention? Does it have any effects on weight, on compliance, and can patients do this? 

What were the results of the study?

Dr. Shah: What we saw was that patients actually had a reduction in body mass index of about 8% at 3 months, and they were eating to satiety. We did not ask patients to calorie restrict, because I think it’s important that we don’t focus on what we can’t eat, but focus on what we can and eat till we are full. We had patients eat as much as they wanted, as long as they were eating high-fiber, plant-based foods and unprocessed foods. Despite that, patients with an elevated BMI were able to move their BMI towards a normal BMI. 

With this weight loss, we also saw an improvement in compliance very significantly, where the median fiber intake was below the RDA for these patients before the study, and it improved to above the RDA in the study. Meaning, the recommended daily allowance of about 30 g or 25 g. 

What we also saw was the compliance. We calculated the percentage of calories that were unprocessed plant foods and we looked at, did this improve over time? We saw that at the start of the study, before the patient started the study, their unprocessed plant food intake was only about 20% of their calories. This is very typical of a standard Western diet, so nothing different than most patients. This improved to 90% on the intervention and even a year after remained high at 70%. We saw that the patients that made the changes were able to sustain them pretty much long term because they saw the benefits. 

Across the board, the patients who responded, all of them said if there was another study, they would be glad to participate

Dr. Shah

Measuring quality of life for study participants 

Dr. Shah: Another question that doctors and patients ask is, are these changes something that’s feasible? Will a patient be able to do it? Does it affect their quality of life? Do they enjoy it? We actually checked quality of life by serving patients through the study. We actually saw an improvement in global health status dyspnea or shortness of breath and fatigue scores across the time. 

We also looked at things like surveying them and said, would you do this study again if we offered it to you? Or, how difficult was the study to do? Across the board, the patients who responded, all of them said if there was another study, they would be glad to participate. We also saw that patients saw an improvement in many different aspects of their health, like self-confidence, body mass index, and some had improvements in arthritis or back pain. There were small changes that helped patients across different symptoms. Overall, just eating better. 

Amongst all the patients, they all said that the study was somewhat easy or very easy to follow, but none of them said it was difficult. That was encouraging too, that patients were able to make these changes, and some of them were able to sustain them long term. 

Where there improvements in insulin resistance?

Dr. Shah: Other things we looked at, we try to look at correlatives, meaning looking at blood and stool biomarkers that we know are associated with cancer progression. We know things like insulin resistance, for instance, is associated with progression of cancer. We saw that insulin resistance actually improved on the study despite these patients eating more carbs than ever. But because these are complex carbohydrates, there was actually an improvement in insulin resistance.

We had one patient actually on insulin for 30 years and was able to stop it within a month on the study and now 2 years out, has not needed insulin again. It is possible for patients to reverse some of these metabolic disorders and actually feel better with time. 

What were the effects of a high-fiber, plant-based diet on microbiome diversity?

Dr. Shah: We also saw an improvement in the microbiome profile. If you’ve followed a lot of cancer data on the microbiome, one common theme pops up every time. That theme is that higher microbiome diversity – meaning many different kinds of bacteria in the microbiome, so a variety. If you think about a healthy rainforest compared to a forest with just palm trees, the healthy rainforest, or the one with microbiome diversity, is what’s associated with improved progression-free survival and overall survival over and over again in different cancers. 

We have not yet shown in a population that has a precursor to cancer, can we really, with a dietary intervention, improve this diversity and sustain it? In our study, we saw that within 3 months patients had an improvement in their stool microbiome diversity. We also looked at it from baseline to 1 year and it was sustained improved. Even though the intervention was only 3 months, we still saw the benefit at a year because these patients were continuing to keep at least some of these changes going. 

Were there any changes in inflammation?

Dr. Shah: Other things we saw as we looked at changes in inflammation, we saw some improvement in some subsets of the immune cells as well. We’re doing a lot of more detailed analysis with these samples and hoping to put it together as a paper in the next year. We presented some of the findings at the American Society of Hematology meeting.

Did this diet delay the progression of cancer? 

Dr. Shah: The last question many would ask is, all these are good in terms of biomarkers, but did it really delay the progression of the cancer? These were 20 patients so it’s a small study and some had really small low level disease. We can’t expect in a year to see changes in such low level disease for patients. 

Otherwise, there were other patients, 2 of them who had rising M-spikes. So for the past 5 years, their M-spike had slowly been increasing. What we did see is on the intervention with the weight loss and the dietary changes, their M-spike, or the protein that we follow for the disease or the plasma cell disorder, had stabilized. So for these 2 patients who actually lost more than 10% body weight over time and also maintained the dietary changes, we saw a stabilization of their disease that was rising for 5 years before. 

We calculated significance with p values before and after and we do see a change in the trajectory of the disease. I think that diet and the microbiome, insulin resistance, and all of these things can make a big difference in cancer risk and progression. I think we’re just trying to learn a lot about this and bring it to patients.

How can people diversify their microbiome? 

Dr. Shah: If we think about microbiome health, gut microbiome health, like I said, the theme that pops up is diversity. Having a diversity of bacteria. If you’re thinking about diverse bacteria, think about each bacteria needing different foods to survive. You want to eat a diversity of food because that feeds different bacteria. 

Dr. Shah: There’s been a study with over 10,000 stool samples from 10,000 individuals and they looked at who has higher diversity compared to who has lower diversity based on the foods they eat and this was healthy individuals.

I don’t see why what’s in healthy individuals shouldn’t at least somewhat apply to patients with cancer. But what they saw was that patients who ate more than 30 types of plant foods per week, and when I say 30 types, I’m not talking about broccoli 30 times. I’m talking about broccoli, chickpeas, red beans, pinto beans, herbs, spices, whole grains, nuts, seeds, and all of those things. 30 different types of them, compared to those who ate less than 10 plant foods per week, had an increased diversity of their microbiome. 

What are some tips for improving one’s diet?

Dr. Shah: I think one very quick thing that patients can think about implementing is how do you go outside your comfort zone and buy different plant foods that you may not be comfortable eating or used to? Not just eating the same sides of broccoli or potatoes or something that you’re used to, but trying different things.

I do think that taste buds adapt with time, and we do get used to different foods. We’ve seen this on the study time and again, where patients initially find it hard to do it in the first few weeks, but once they do it long enough, they feel like it’s much easier to manage because they’re now used to these tastes and foods. That’s one quick tip. 

Another one would be dietary fiber. If you think about the US population, the average American gets about 10 to 15g of fiber in their diet. There’s a survey been done from the NHANES and they asked a set of the US population and said, “How many of you think you get enough fiber in your diet?” 67% people said, “Yes, we get enough fiber.” In reality, only 5% do. There’s this big disconnect where people think they’re getting enough fiber, but they’re not. 

Dietary fiber is really food for the microbiome. When you think about it that way, I think it would be very important to make sure you’re getting at least 25 to 30g of fiber a day. I’m not talking about fiber supplements, but dietary fiber, so think about foods you’re eating. Fiber only comes from plant foods, so try to up that intake of the fiber in your diet. I think those two things are very powerful. 

Another one could be looking at fermented foods and increasing the consumption of those. There have been microbiome studies showing how fermented foods reduce inflammation and also improve diversity. That could be another aspect of change to think about. 

What are some common, healthy fermented foods?

Dr. Shah: Fermented foods are things like kimchi, kombucha, yogurt. Those would be some of the common ones. Sauerkraut, things like that.

What are some common high-fiber plants? 

Dr. Shah: For fiber, I think beans. Beans or legumes are one of the most underrated best foods ever because they are longevity foods. Many of the longest-living populations actually eat a lot of beans, and we don’t really see most people eating them. One cup of beans has 15g of protein and 15g of fiber. 

A very simple fix for a patient would be, if they were getting the average American diet and having 10 to 15g of fiber in their diet, eat one cup of beans and you reach 30g of fiber already. It’s a very quick fix in that sense. In a cancer patient, if they need a little more protein or energy, beans are a good source of that too. Other foods that are good or healthy are cruciferous vegetables. Broccoli, Brussels sprouts, and cauliflower.

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Cancers FAQ

What is the Difference Between Lymphoma and Leukemia?

What is the Difference Between Lymphoma and Leukemia?

A leading oncologist offers clarity on leukemia vs. lymphoma

Dr. Matasar Explains the difference between leukemia and lymphoma

In this discussion, we delve into the distinction between two types of blood cancer: leukemia and lymphoma. Confusion often arises because both are blood cancers. Leukemia typically occurs in the bone marrow, while lymphoma originates in the lymphatic system, primarily impacting lymph nodes and tissue.

Dr. Matthew Matasar, Chief of the Division of Blood Disorders at Rutgers Cancer Institute and an expert hematologist-oncologist shares the differences between leukemia and lymphoma – in human terms.

At The Patient Story, we aim to provide straightforward answers for those looking to better understand blood cancers.


This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.


What is the Difference Between Lymphoma and Leukemia?

Dr. Matasar: This is a point of confusion because these terms get bandied around a lot. Lymphomas are cancers of lymphocytes; that is a biological term. Leukemia means cancer in the blood. It’s a geographical term. It doesn’t tell you anything about what type of cancer it is.

You can have breast cancer that is in the leukemic phase, meaning it’s a breast cancer, but it’s spread into the bloodstream. You can have prostate cancer, in the leukemic phase. You can have lymphomas that are leukemic lymphomas. Chronic lymphocytic leukemia is a lymphoma that is leukemic. It’s a lymphoma in the bloodstream.

Other types of leukemia are not from lymphocytes but from other types of immune cells. The most common of those is acute myelogenous leukemia or AML. That’s a type of leukemia that comes not from lymphocytes but from myelocytes, a different type of immune cell.

Read more patient experiences with first symptoms of lymphoma »


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Focus: Chronic lymphocytic leukemia (CLL), Hairy Cell Leukemia (HCL)
Institution: OSUCCC-The James
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Tim Fenske, MD, MS



Role: Hematologist-Oncologist
Focus: chronic lymphocytic leukemia (CLL) & leukemia and lymphoma | CAR T, targeted therapy
Provider: Medical College of Wisconsin
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Focus: Multiple myeloma, Waldenström’s Macroglobulinemia, early screening, clinical trials
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Focus: Specialist in treating Chinese-speaking patients
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Provider: Northwell Health (NYC)
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Categories
Medical Experts Medical Update Article

How Long Can You Live with Chronic Lymphocytic Leukemia

How Long Can You Live with Chronic Lymphocytic Leukemia?

Dr. Adam Kittai and Dr. Joanna Rhodes share their thoughts on CLL life expectancy

Receiving a chronic lymphocytic leukemia (CLL) diagnosis is likely to lead to a very human question: How long can I or my loved one live with CLL? To answer that question, we went directly to two CLL experts who have seen patients at all different stages.

In this conversation, Dr. Adam Kittai from The Ohio State University – The James, and Dr. Joanna Rhodes from Rutgers Cancer Institute of New Jersey share their insight and expertise on Chronic Lymphocytic Leukemia (CLL), offering a comprehensive understanding of the disease landscape. Through their combined knowledge, they shed light on factors influencing the lifespan of individuals with CLL, such as disease biology, genetic tests, and age at diagnosis.

Together, Dr. Rhodes and Dr. Kittai impart not only scientific insights but also a sense of hope, emphasizing the personalized nature of each CLL journey.


People can live decades with CLL, and they can live decades without needing treatment. Everyone’s a little bit different.

Dr. Joanna Rhodes


This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.



How long can individuals live with chronic lymphocytic leukemia (CLL), and what factors contribute to the variation in life expectancy?

Dr. Joanna Rhodes: People can live decades with CLL, and they can live decades without needing treatment. Everyone’s a little bit different. Some of that has to do with the age at which you’re diagnosed, some of it has to do with your disease biology, and some of that can be told by genetic tests that we send on your CLL. It gives me an idea of how I think your CLL is going to behave potentially over time. Some of that we can tell also within the first couple of years by what your blood counts do over time.

Could you elaborate on the significance of changes in white blood cell count for individuals with CLL?

Dr. Joanna Rhodes: Now, the natural course of CLL is eventually, your white blood cell count will go up. The first time that happens, it feels very scary for sure because you don’t know how that’s going to happen over time. But your white blood cell count going up doesn’t mean it might not come back down. CLL cells are pretty reactive, so if anything is going on, if you have an infection or if you had surgery, your white blood cell count can go up. It doesn’t mean it’ll stay that high. It can go back down. That’s something that we see pretty commonly in clinical practice.

»MORE: Hear directly from patients living well with CLL

What can you tell us about specific survival rates and life expectancy for people with CLL?

Dr. Joanna Rhodes: According to SEER, which is our National Cancer Institute data, the five-year survival rate currently for CLL is around 89%. That means at five years, 89% of people who were diagnosed with CLL are still alive. What we don’t always know is where the 11% death rate is from because the median age of diagnosis of CLL is 70. As we get older, other things can happen, like heart disease, hypertension, and motor vehicle accidents. It doesn’t necessarily take into account exactly why patients who have CLL are passing away.

Susan K. feature profile

“Get creative and try to find ways to bring joy to your life and happiness because life is short for all of us. No one knows what the next five seconds are going to bring so just live your life and enjoy your life”

Susan K. | Explore her CLL story

How do you approach discussing survival statistics with patients, considering the emotional impact it may have?

Dr. Joanna Rhodes: That’s also a hard statistic to hear, so one of the ways that I frame this for patients is that while we have statistics, that’s taking a whole group of people and figuring out the trend. The only person that matters is you. You’re what we call an n-of-1, and so that’s important to remember. Just because there’s a number out there doesn’t necessarily mean that number relates to what your story is going to be and what your journey is going to be.

Dr. Kittai, can you share some insights on what to expect regarding survival rates for individuals with CLL??

Dr. Kittai: One of the questions I hear is the average age of death of CLL patients. There was an interesting study that was presented at iwCLL that looked at all patients who were treated in modern-day clinical trials. These are patients who require treatment. They did a study where they took all those patients and matched them to age-matched controls in the general population. The overall survival of the two groups was practically equal.

With treatment, patients were getting very, very close to their life expectancy. Remember, these are all clinical trials so it’s going to seem a little bit low. It was 52 to 55 months versus age-matched controls which was 56 months. Once again, it was age-matched controls, so they matched the population to age-matched controls to general society, and the difference was only by a few months. That tells us that our patients with CLL are living very close to the normal life expectancy, even if they require treatment with our new therapies, which is great news.


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Tamsin W. feature

Tamsin W.



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Sean R.



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Lacey B.




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Tony D.



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Categories
Latest News & Research

Latest Data on Newly Approved CLL Drug Pirtobrutinib Presented at ASH 2023

Latest Data on Newly Approved CLL Drug Pirtobrutinib Presented at ASH 2023

Top CLL doctors share their thoughts on pirtobrutinib

Accelerated approval was granted to pirtobrutinib (JAYPIRCA, Eli Lilly and Company) by the U.S. Food and Drug Administration (FDA) for the treatment of adult patients with chronic lymphocytic leukemia (CLL) or small lymphocytic lymphoma (CLL/SLL) who have received at least two prior lines of therapy, including a BTK inhibitor and a BCL2 inhibitor.

To better understand what the approval means for CLL/SLL patients, we spoke directly to Dr. Adam Kittai from The Ohio State University – The James and Dr. Joanna Rhodes Rutgers Cancer Institute of New Jersey at this year’s American Society for Hematology (ASH) Annual Meeting.


This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.



What makes pirtobrutinib distinct from other FDA-approved BTK inhibitors?

Dr. Joanna Rhodes: Pirtobrutinib is different from our other FDA approved BTK inhibitors because it’s something called a non-covalent inhibitor. It is a different drug entirely than our prior BTK, our covalent BTK inhibitors – ibrutinib acalabrutinib, and zanubrutinib. I consider it in its own class of drug, as opposed to lumping it into all BTK inhibitors because they do have different pathways and I think will be used in different scenarios.

Right now, the current FDA approval for pirtobrutinib is for patients that have received a covalent BTK inhibitor – so have gotten ibrutinib, acalabrutinib, or zanubrutinib – as well as a BCL2 inhibitor. And in usually in the United States, that’s venetoclax. It’s the one that’s commercially available. One of the challenging clinical scenarios that we were in before pirtobrutinib was if patients need more than two lines of therapy, what were we giving them? And we didn’t have a lot of great options.

Can you share your insights on the safety and effectiveness of pirtobrutinib?

Dr. Joanna Rhodes: Having participated in the BRUIN trial, I can tell you from a patient perspective that it is very few side effects. I think that’s really wonderful, and it’ll be exciting to see how pirtobrutinib moves into the treatment landscape of CLL

Can you provide an overview of the BRUIN trial?

Dr. Adam Kittai: So here at ASH, we saw an updated BRUIN trial analysis by my mentor, Dr. Woyach, at the CLL oral session that gave us a longer time follow up for patients on pirtobrutinib. But it also helped us know how patients do, whether they got BCL2 inhibitor venetoclax or not. In the trial, it was only mandated that you get a BTK inhibitor. 100% of patients received a BTK inhibitor. However, about 50% of received venetoclax as well. Dr. Jennifer Woyach showed us in the trial that if patients had received a prior BTK inhibitor and a venetoclax when they got pirtobrutinib, the median PFS was around 15 months, whereas if they did not give venetoclax, the median PFS is around 23 months.

Can you elaborate on the implications of this data for informing patients about the expected duration of treatment?

Dr. Adam Kittai: The reason why I bring this up, and why I think it’s important, is it helps us inform patients about how long we expect them to stay on drug. It also might have implications into the future about sequencing in terms of whether or not we should go from a covalent BTK inhibitor to venetoclax to a non-covalent or covalent BTK, better to non-covalent BTK orbiter to the nucleus. I think time will tell until we really know the answer to that question, but at least knowing this data is really informative.

Another thing that was presented by Doctor Jennifer Brown at Dana-Farber was the resistance mechanisms to pirtobrutinib. We got a better idea of how resistance forms in pirtobrutinib and how pirtobrutinib helps with resistance to covalent BTK inhibitors.

Once again, she showed that T474I and L528W are the primary resistance mutations for pirtobrutinib, and knowing those resistance mutations helps us as well. Knowing, sequencing, knowing and informing in the future whether or not we can go from covalent to non-covalent, which we know we can, or non-covalent to covalent, which is still a question that I think remains to be solved.

What can you tell us about pirtobrutinib’s side effects and clinical trials?

Dr. Joanna Rhodes: I can tell you from a patient perspective that it has very few side effects. I think that that’s really wonderful, and it’ll be exciting to see how pirtobrutinib moves into the treatment landscape of CLL.

There’s a lot of upcoming clinical trials using pirtobrutinib that we don’t have data from yet. They’re currently enrolling, and some have completed enrollment. Those are comparing pirtobrutinib to other covalent BTK inhibitors for patients who haven’t been treated with a BTK inhibitor. And then I think what’s interesting is we’re going to see it used in combination therapy for time-limited durations of treatment. And I think it’s going to be a safe and effective drug in that scenario as well, but we don’t have data from those trials yet. So definitely more to come from pirtobrutinib. But again, really exciting that for patients that have progressed or have received a BCL2 inhibitor and a covalent BTK inhibitor, we have this as a potential treatment option, commercially available and readily available outside of clinical trial.

Final thoughts

Dr. Adam Kittai: So really exciting to see this data, really exciting to see the evolution of pirtobrutinib. And I think the most exciting thing is now we just have another drug that’s approved for the treatment of CLL, which is just fantastic for our patients.


CLL patient stories

Susan K. feature profile

Susan K.



Symptoms: Swollen lymph nodes on the neck, high white blood count
Treatment: Venetoclax & obinutuzumab

Hannah D.



1st Symptoms: fatigue, high WBC



Treatment: Imbruvica, Venetoclax
Andrew SchorrDiagnosis: Myelofibrosis, Chronic Lymphocytic Leukemia (CLL)Treatment: Clinical trial, Gazyva, Jakafi, Increbic, Reblozyl and steroids

Jeff F.



1st Symptoms: Fatigue and night sweats



Treatment: Clinical trial of ofatumumab

Leesa T.



1st Symptoms: Bruising



Treatment: Imbruvica (ibrutinib),
Brukinsa (zanubrutinib)
Michele Nadeem-Baker

Michele N.



1st Symptoms: Slow healing, scalp infection, enlarged lymph nodes



Treatment: Clinical trial of ibrutinib, fludarabine, chlorambucil and rituximab; acalabrutinib
Tamsin W. feature

Tamsin W.



1st symptoms: Out of breath, dizzy, nauseated, tiredness, palpitations
Treatment: Obinutuzumab & venetoclax

Bill M.



1st symptoms: Tightness, lumps in left side of neck, severe pain in left shoulder, enlarged spleen
Treatment (CLL): 6 cycles of EPOCH, clinical trial for DuoHexabody-CD37

Stephen B.



1st symptoms: difficulty swallowing and fatigue
Treatment: Rituxan, Bendamustine, targeted therapy BTK inhibitor (ibrutinib)

Sean R.



1st symptoms: No apparent symptoms; went to ER for unrelated shoulder pain
Treatment: Clinical trial, Ibrutinib & Venetoclax

Lacey B.




1st symptoms: Extreme fatigue and elevated WBCs
Treatment: FCR chemo and Venetoclax+R

Tony D.



1st Symptoms: Lump in back of neck that got bigger in a couple weeks
Treatment: Targeted therapy - orall pill (Imbruvica), takes 3 pills a night


Categories
CLL Medical Experts

Should CLL Patients get Vaccines?

Should CLL Patients Get Vaccines?

Patients with chronic lymphocytic leukemia (CLL)/small lymphocytic lymphoma (SLL) face a compromised immune system, heightening the risk of infections. Vaccinations are often recommended for people with CLL/SLL but patients may still have questions.

To address CLL and vaccinations, we invited a CLL expert panel to discuss the question specifically. Our panel featured Dr. William Wierda, MD, Ph.D., from MD Anderson, Dr. Nicole Lamanna, MD from Columbia University Medical Center, Dr. Adam Kittai, MD from the Ohio State University, and Jackie Broadway-Duren, PhD, DNP, APRN, FNP-BC from MD Anderson.

In addition to the video above, read the audio transcript of the conversation to learn more about the shingles, RSV and COVID vaccines for CLL patients.

The Let’s Talk CLL live discussion held at MD Anderson Cancer Center on October 14, 2023. To watch the video conversation, click here.


Thank you to AbbVie & BeiGene for their support of our patient education program! The Patient Story retains full editorial control over all content. This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

Abbvie logo

BeiGene



Shingles Vaccine

Patient: Dr. Wierda, is the shingles vaccine okay with CLL?

Dr. Wierda: You should not get the live virus vaccination for shingles. The one that’s used most commonly now, SHINGRIX, is not a live virus. It’s two doses separated by 2 to 6 months. You should not get live virus vaccinations if you have CLL.

In general, we favor continuous therapy for patients with deletion 17p.

Dr. Adam Kittai

17p Deletion

Patient: Ten years ago, the FISH test seemed to be a big deal and if one had 17p deletion, you didn’t have much time left. Is 17p deletion worse than anything else now?

Dr. Kittai: 17p is still one of our most important prognostic tests. The classic FISH testing that we do is deletion 13q, which is a good prognostic factor, deletion 11q, which used to be a bad one but now seems not to matter as much anymore, trisomy 12, which is intermediate, and deletion 17p.

We knew that patients who had deletion 17p on FISH did not respond well to chemotherapy. Our new agents work for patients with 17p.

In general, we favor continuous therapy for patients with deletion 17p. Not to say that you can’t get time-limited therapy with 17p, but it appears that 17p may matter more with time-limited therapy than it does with continuous therapy.

Typically, 17p goes hand in hand with TP53, which is done on next-generation sequencing. Sometimes they can be discordant. It’s pretty much the same thing.

In the clinical trials, when we talk about these combinations, we’re trying to see if these alternative strategies will be better in higher-risk disease individuals versus non-high-risk disease individuals.

Dr. Nicole Lamanna

Dr. Lamanna: Patients who had these features were considered more adverse or worse, but these new targeted therapies have done great for those individuals.

In the clinical trials, when we talk about these combinations, we’re trying to see if these alternative strategies will be better in higher-risk disease individuals versus non-high-risk disease individuals. How do we tailor our therapies better depending on the features of your disease?

Patients with 17p and TP53 are doing so much better on these targeted therapies. They’re still important but compared to the chemoimmunotherapy days, folks are doing much, much better because of these targeted therapies.

RSV Vaccine

Patient: What is the consensus on the RSV vaccine?

Dr. Wierda: I don’t think there’s a consensus yet. It’s a new vaccine. We heard a little bit of data at the International Workshop on CLL meeting. We need more data on its effectiveness in patients with CLL.

I don’t see a lot of drawbacks in giving it but we haven’t entered an era where we’re recommending it for every patient like we do for the flu shot. That may come, but because it’s a new vaccine and there’s limited data in the general population, there’s not any data available for us in the CLL community.

Even though there are risk-benefit ratios for everything you do in life, including side effects potentially from some vaccines, we don’t want you getting sick and being admitted to the hospital due to these infections.

Dr. Nicole Lamanna

COVID Vaccine

Dr. Lamanna: We think about vaccines because we’re trying to mitigate infectious complications in patients with CLL. In general, for many CLL patients, the immune system is impaired so your ability to mount the same type of antibody response to some vaccines compared to patients without CLL is generally not as good, but that doesn’t mean you shouldn’t get them.

The point is that you can get the flu shot and still get the flu, you can get the COVID vaccine and still get COVID, but if it diminishes the severity of those illnesses and prevents hospitalizations, that’s what we’re trying to do, right? We’re trying to give you any armamentarium that you might have to protect yourself from bacterial or viral infections that are running around so you’re not as sick.

One of the complications we see in CLL patients is infection — pneumonia, sinusitis, cellulitis, and hospitalizations. Infections and recurrent hospitalizations inhibit the quality of life. We have many patients who go through this day in and day out. We try anything we can use to diminish infections.

Vaccines may not be perfect, but we still recommend the COVID vaccine. Despite all the potential side effects, you should get the vaccine. We lived through 2020 and saw how bad it was. We saw how many people died. CLL patients had one of the highest mortality rates due to COVID.

Even though there are risk-benefit ratios for everything you do in life, including side effects potentially from some vaccines, we don’t want you getting sick and being admitted to the hospital due to these infections.

There is no evidence that the COVID vaccine causes CLL.

Dr. Adam Kittai

Jeff: Dr. Kittai, I know the answer to this question, but I need for this to be reinforced in our community because it is a pervasive belief. There are a large number of patients who believe the COVID vaccine gave them CLL. Can you talk about why they think this?

Dr. Kittai: There’s no data to state that the COVID vaccine gave patients CLL. Honestly, it comes back to the statement that Dr. Nicole made. A lot of people think that they get the flu vaccine then they get the flu. Ultimately, when COVID was first happening, we were recommending our older patients to get the COVID vaccine.

Given that CLL is a disease of older patients, there’s going to be a chance that any older patient might develop CLL at any given time. It may have also been that someone may not have seen the doctor for a while, got COVID, went to go see the doctor, and finally had labs. Remember that CLL is usually diagnosed incidentally so it just might be timing, but there is no evidence that the COVID vaccine causes CLL.


CLL Patient Stories

Susan K. feature profile

Susan K.



Symptoms: Swollen lymph nodes on the neck, high white blood count
Treatment: Venetoclax & obinutuzumab

Hannah D.



1st Symptoms: fatigue, high WBC



Treatment: Imbruvica, Venetoclax
Andrew SchorrDiagnosis: Myelofibrosis, Chronic Lymphocytic Leukemia (CLL)Treatment: Clinical trial, Gazyva, Jakafi, Increbic, Reblozyl and steroids

Jeff F.



1st Symptoms: Fatigue and night sweats



Treatment: Clinical trial of ofatumumab

Leesa T.



1st Symptoms: Bruising



Treatment: Imbruvica (ibrutinib),
Brukinsa (zanubrutinib)
Michele Nadeem-Baker

Michele N.



1st Symptoms: Slow healing, scalp infection, enlarged lymph nodes



Treatment: Clinical trial of ibrutinib, fludarabine, chlorambucil and rituximab; acalabrutinib
Tamsin W. feature

Tamsin W.



1st symptoms: Out of breath, dizzy, nauseated, tiredness, palpitations
Treatment: Obinutuzumab & venetoclax

Bill M.



1st symptoms: Tightness, lumps in left side of neck, severe pain in left shoulder, enlarged spleen
Treatment (CLL): 6 cycles of EPOCH, clinical trial for DuoHexabody-CD37

Stephen B.



1st symptoms: difficulty swallowing and fatigue
Treatment: Rituxan, Bendamustine, targeted therapy BTK inhibitor (ibrutinib)

Sean R.



1st symptoms: No apparent symptoms; went to ER for unrelated shoulder pain
Treatment: Clinical trial, Ibrutinib & Venetoclax

Lacey B.




1st symptoms: Extreme fatigue and elevated WBCs
Treatment: FCR chemo and Venetoclax+R

Tony D.



1st Symptoms: Lump in back of neck that got bigger in a couple weeks
Treatment: Targeted therapy - orall pill (Imbruvica), takes 3 pills a night


Categories
Latest News & Research

Significant Disparity: Myeloma Real-World Results Show Striking Contrast with Clinical Trials

Worse Outcomes for Myeloma Patients in Real-World Results vs. Clinical Trials

Multiple myeloma patient outcomes are strikingly different in the real-world versus controlled environments according to data presented at the ASH Conference 2023 (Abstract 541). In the real world, multiple myeloma patients demonstrated a 44% reduction in progression-free survival (PFS) and a 75% decrease in overall survival (OS) compared to participants in clinical trials.

The study titled “Comparison of the Efficacy in Clinical Trials Versus Effectiveness in the Real-World of Treatments for Multiple Myeloma: A Population-Based Cohort Study” explores the gap between clinical trial efficacy and real-world effectiveness of treatments for multiple myeloma.

Conducted by a team led by Dr. Alissa Visram, the research focused on assessing the outcomes of patients treated with standard-of-care multiple myeloma regimens in routine practice compared to those in registration phase III randomized controlled trials (RCTs).

Key Findings:

  1. Efficacy-Effectiveness Gap: Real-world (RW) patients experienced a 44% worse progression-free survival (PFS) and a 75% worse overall survival (OS) compared to RCT patients across various multiple myeloma regimens.
  2. Patient Characteristics: RW patients were generally older, and for relapsed regimens, there was a longer time between multiple myeloma diagnosis and the start of the regimen in the real-world compared to RCTs.
  3. Regimen Performance: Most multiple myeloma regimens evaluated showed worse PFS and OS in the real-world setting, except for pomalidomide/dex (Pd), which demonstrated a trend towards better performance.
  4. Safety Profile: The safety profile, measured by inpatient hospitalization rates during treatment, was comparable between the real-world cohort and reported serious adverse events (AEs) in RCTs.

Implications: The study emphasizes the significant efficacy-effectiveness gap between registration RCTs and real-world usage of multiple myeloma regimens. The findings underscore the importance of ongoing evaluation of real-world data to inform clinicians and patients for shared treatment decision-making.

Find out more

This link will take you to an external site

Patient Stories by Multiple Myeloma Type

Explore our multiple myeloma stories below, where patients describe things like:

  • First myeloma symptoms
  • What treatments they underwent
  • Living with multiple myeloma

Active myeloma

Clay

Clay D.



Diagnosis: Multiple myeloma
1st Symptoms:
Persistent kidney issues, nausea
Treatment:
chemo, radiation, stem cell transplant
...
Melissa

Melissa V.



Diagnosis: Multiple myeloma, stage 3
1st Symptoms:
Frequent infections
Treatment:
IVF treatment & Chemotherapy (RVD) for 7 rounds
...

Elise D.



Diagnosis: Multiple myeloma, refractory
1st Symptoms: Lower back pain, fractured sacrum
Treatment: CyBorD, Clinical trial of Xpovio (selinexor)+ Kyprolis (carfilzomib) + dexamethasone
...
Marti P multiple myeloma

Marti P.



Diagnosis: Multiple myeloma, stage 3



1st Symptoms: Dizziness, confusion, fatigue, vomiting, hives



Treatment: Chemotherapy (Bortezomib/Velcade), Daratumumab/ Darzalex, Lenalidomide, Revlimid) and stem cell transplant
...
Ray H. feature

Ray H.



1st signs: Hemorrhoids, low red blood cell count
Treatment: Immunotherapy, Chemotherapy, Stem Cell Transplant
...
Valarie T. feature profile

Valarie T.



Symptoms: Nose bleeds, fatigue, back pain
Treatment: Chemotherapy, stem cell transplant
...
Jenny A. feature profile

Jenny A.



Symptoms: Nose bleeds, fatigue, back pain
Treatment: Chemotherapy, stem cell transplant
...
Keith G.

Keith G.



Symptoms: High levels of protein
Treatment: Chemotherapy, stem cell transplant
...
Julie C.

Julie C.



Symptoms: Queasiness, food aversions, lack of appetite, fatigue
Treatment: Stem cell transplant, chemotherapy (D+PD), bispecific antibodies (talquetamab & cevostamab)
...
Erin H. feature profile

Erin H.



Symptoms: Back pains
Treatment: Chemotherapy, stem cell transplant
...
Gregory P. feature profile

Gregory P.



Symptoms: Back pains
Treatment: Chemotherapy, stem cell transplant
...
Laura E. feature profile

Laura E.



Symptom: Increasing back pain
Treatments: Chemotherapy, stem cell transplant, bispecific antibodies
...

Typical myeloma

The majority of people diagnosed with myeloma fall under this category:

  • IgG k (kappa)
  • IgG λ (lambda)
  • IgA k (kappa)
  • IgA λ (lambda)

Scott

Scott C.



Diagnosis: Multiple myeloma, relapsed/refractorySubtype: IgG lambda (majorityof myelomas)
1st Symptoms: Pain in hips and ribs, night sweats, weight loss, nausea
Treatment:
Clinical trial, chemo, kyphoplasty, stem cell transplant
Jude

Jude A.



Diagnosis: Multiple myeloma, stage 3
1st Symptoms:
Pain in back, hips and ribs; difficulty walking
Treatment:
Bilateral femoral osteotomy, reversal due to infection; chemotherapy

Light chain myeloma

It’s estimated that light chain myeloma makes up about 15% of all myeloma diagnoses. There are times when malignant plasma cells produce only the light chain component of the antibody. Patients diagnosed with these cases have what’s known as “light chain myeloma.”


Carlos C.



Diagnosis: Multiple myeloma, Light Chain, Stage 2
1st Symptoms:
Back pain and spasms
Treatment:
Back surgery to fuse T1 and T2, chemotherapy (RVD) and stem cell transplant

Non-secretory myeloma


Beth A.



Diagnosis: Multiple myeloma, relapsed/refractory
Subtype: Non-secretory (1-5% of myelomas)
1st Symptoms: Extreme pain between shoulder blades, sternum, head, burning sensation
1st Line Treatment: VAD chemo, radiation, stem cell transplant
RR Treatment: 8 chemo regimens, successful combo→selinexor+bortezomib+dexamethasone

Inactive myeloma

Smoldering myeloma


Maui B.



Diagnosis: Smoldering myeloma
Cancer Details:
Smoldering myeloma is pre-symptomatic or pre-treatment multiple myeloma
1st Symptoms:
Inflammatory eye disease, uterine bleeding
Treatment:
N/A
...

Categories
Medical Experts

Should Cancer Patients Reconsider CAR T-cell Therapy?

Should Cancer Patients Reconsider CAR T-cell Therapy?

Explore CAR T-cell therapy insights with Dr. Joshua Brody amid FDA investigation.

https://youtu.be/swIpc_DeMtM

The headlines about the recent FDA investigation into CAR T-cell therapy have raised questions about the cancer treatment for many patients.

To provide some answers, we sat down with Dr. Joshua Brody, Director of the Lymphoma Immunotherapy Program at The Tisch Cancer Institute at Mount Sinai, at the ASH conference in San Diego 2023.

Dr. Brody live from ASH conference 2023

As background, the FDA is investigating T-cell malignancies associated with BCMA- or CD19-directed autologous CAR T-cell immunotherapies.

Dr. Brody addresses pertinent questions about CAR T-cell therapy. Given the ongoing evaluation of the identified risk of T-cell malignancy and the potential serious outcomes, including hospitalization and death, patients and their caregivers must stay updated.

In this Q&A with Dr. Brody, we aim to empower patients to make informed decisions. Understanding the risks and benefits, the personalized nature of the treatment, and the latest advancements in cancer immunotherapy become paramount.


What prompted the recent FDA investigation into CAR T-Cell therapy?

Dr. Joshua Brody: The FDA starting a new investigation because of some new data. And the data was that there were a total of 20 reported cases of a bad type of lymphoma called T cell lymphoma, that occurred in patients who had previously gotten CAR T-cell therapy.

Why is this investigation considered significant?

Dr. Brody: While 20 cases out of 30,000 might seem small, it’s crucial to investigate further to ensure the accuracy of these numbers and determine if there might be another 20 cases that we haven’t heard about yet.

Can you provide insights from a specific case that is being discussed at ASH?

Dr. Brody: It involved a patient with myeloma, not Dlbcl, who got CAR T-cell therapy. And in that case, it sounded very clear that the T cell lymphoma that they got months to a year after the CAR T-cell was because of the CAR T-cell therapy, not just a coincidence.

What are the known risks associated with CAR T-cell therapy?

Dr. Brody: The risks of CAR T-cell therapy we know about, are still probably of greater consequence for our patients than this super rare, but now new and therefore kind of exciting and interesting thing.

How does the risk of T cell lymphoma compare to other potential side effects?

Dr. Brody: If you have lymphoma, you’re probably going to get some therapy one type or another. And all of these therapies have some risks. So this new thing, the T cell lymphoma that developed in some number of people after the CAR T-cell therapy is still proportionally a very small risk compared to these other things.

Should patients alter their plans for CAR T-cell therapy based on this information?

Dr. Brody: So I don’t think that people should have to change their plans or pump the brakes on that plan, but they surely should have the conversation with their oncologist, their lymphoma doctor, as there are different types of monitoring that we should do afterwards just to keep an eye out for this.

Is there any identified higher-risk group for developing T-cell lymphoma?

Dr. Brody: Not that we know of yet.

Why was the occurrence of T-cell lymphoma not entirely unexpected?

Dr. Brody: This side effect was both surprising and should not actually be super surprising. Because CAR T is a type of gene therapy.

How does the risk of T-cell lymphoma compare to other therapy-induced cancers?

Dr. Brody: So it is kind of related. But just again, a pretty rare thing.

What questions should patients be asking about their treatment options?

Dr. Brody: Patients should be asking, you know, what’s right for me specifically. That answer may have been clear five years ago, CAR T-cell was, you know, the immunotherapy now, maybe bispecific antibodies by themselves or maybe bispecific antibodies in combination with some standard therapies.

Can you elaborate on the process of CAR T-cell therapy and its personalized nature?

Dr. Brody: So you sit there on the Leukapheresis machine for maybe four hours, and we get some T cells from that, some of your immune cells, and they send those T cells to one of the manufacturing labs, and they take those T cells and put this gene inside. And the gene is called a car.

CAR T-cell therapy is both immune therapy and gene therapy. We have patients give some blood. It’s a little more than the normal, you know, blood poke in an arm because we do this thing called pheresis or leukapheresis. You give some blood, we keep one part of it and then give you back all the blood so you’re not too drained afterward.

What is the significance of the personalized aspect of CAR T-cell therapy?

Dr. Brody: CAR T-cell therapy is a personalized product made for each person. And then before we re-infuse those CAR T-cells, people get some chemotherapy right beforehand. And that chemotherapy sometimes call it lymphodepleting chemotherapy.


Explore More from Medical Experts


David Miklos, MD



Date: Jan. 2021
Focus: Who benefits from CAR T, ZUMA-2 clinical trial, Stanford's CAR 22 Work
Provider: Stanford Medical

DLBCL Patient Stories

Lena V. feature profile

Lena V., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 1



Symptoms: Blood in urine
Treatment: Surgery, chemotherapy (R-CHOP), radiation
Cindy M. feature profile

Cindy M., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4



Symptoms: Itchy skin on the palms and soles of feet; yellow skin and eyes
Treatment: Chemotherapy (R-CHOP)
Harriet C., Diffuse Large B-Cell Non-Hodgkin Lymphoma (DLBCL) Cancer Diagnosis: Diffuse Large B-Cell Lymphoma (DLBCL)Symptoms: Weight loss, difficulty walking, stomach pain, feeling unwell Treatment: Chemotherapy, EPOCH, methotrexate
Sammie shares her non-hodgkin's lymphoma story
Sammie F., Diffuse Large B-Cell Non-Hodgkin Lymphoma (DLBCL) Cancer Diagnosis: Diffuse Large B-Cell Lymphoma (DLBCL)Symptoms: Chest pain, back pain, bump on neck, night sweats Treatment: Chemotherapy, CAR T-Cell therapy
Alesia A., Diffuse Large B-Cell Lymphoma (DLBCL) Cancer Diagnosis: Diffuse Large B-Cell Lymphoma (DLBCL)Symptoms: Fatigue, shortness of breath, swelling, night sweats, anxiety Treatment: Chemotherapy
Tony W. feature profile

Tony W., Relapsed T-Cell/Histiocyte-Rich Large B-Cell Lymphoma (T/HRBCL)

1st Symptoms: A lot of effort needed cycling, body wasn’t responding the same; leg swelling
Treatment: R-CHOP chemotherapy, CAR T-cell therapy

Jonathan S., Diffuse Large B-Cell (DLBCL), Stage 4



1st Symptoms: Severe shoulder pain
Treatment: 6 rounds of R-CHOP chemotherapy, 10 rounds of methotrexate, 12 rounds of focal radiation, autologous stem cell transplant

Leanne T., Follicular Lymphoma Transformed to DLBCL, Stage 3B



1st Symptoms: Fatigue, persistent cough
Treatment: R-CHOP chemotherapy, 6 rounds
Paige C.

Paige C., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4



Symptoms: Weight loss, extreme fatigue, swollen lymph nodes in the neck
Treatment: R-EPOCH chemotherapy
Stephanie Chuang

Stephanie Chuang



Stephanie Chuang, founder of The Patient Story, celebrates five years of being cancer-free. She shares a very personal video diary with the top lessons she learned since the Non-Hodgkin lymphoma diagnosis.
Kris W.

Kris W., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4



1st Symptoms: Pain in the side of the abdomen
Treatment: R-CHOP chemotherapy
Robyn S. profile

Robyn S., Relapsed Diffuse Large B-Cell Lymphoma (DLBCL), Stage 2E



Symptoms: Enlarged lymph nodes
Treatments: Chemotherapy: R-CHOP, R-ICE, intrathecal, BEAM; autologous stem cell transplant, head and neck radiation, CAR T-cell therapy

Barbara R., Diffuse Large B-Cell (DLBCL), Stage 4



1st Symptoms: Abdomen and gastric pain



Treatment: Chemotherapy R-CHOP, CAR T-cell therapy, study drug CYT-0851

Luis V., Diffuse Large B-Cell (DLBCL), Stage 4



1st Symptoms: Persistent cough, fatigue, unexplained weight loss



Treatment: Chemotherapy R-CHOP and methotrexate

Nina L., Diffuse Large B-Cell (DLBCL), Stage 4



1st Symptoms: Hip and lower extremities pain, night sweats
Treatment: Chemotherapy R-CHOP

Richard P., Relapsed/Refractory Follicular Lymphoma & DLBCL



1st Symptoms of relapse: Swelling in leg, leg edema Treatment:1st line - R-CHOP chemotherapy, 2nd line - clinical trial of venetoclax-selinexor

Shahzad B., Refractory Diffuse Large B-Cell (DLBCL), Stage 4



1st Symptoms: Extreme fatigue
Treatment: R&B, R-ICE, R-EPOCH, CAR T-cell therapy (cell-based gene therapy)
FDA approved: October 2017

Erin R., DLBCL & Burkitt Lymphoma, Stage 4



Cancer details: Characteristics of both subtypes
1st Symptoms: Lower abdominal pain, blood in stool, loss of appetite
Treatment: Chemotherapy (Part A: R-CHOP, HCVAD, Part B: Methotrexate, Rituxan, Cytarabine)

Emily G., Diffuse Large B-Cell (DLBCL), Stage 4



1st Symptoms: Pain in left knee
Treatment: R-CHOP chemo (6 cycles), high-dose methotrexate chemo (3 cycles)


Categories
Momelotinib Targeted Therapies Treatments

FDA Approves Momelotinib

FDA Approves Momelotinib (Ojjaara) for Myelofibrosis Patients with Anemia

Benefits and Considerations: Navigating Momelotinib’s Usage with Dr. Mascarenhas

In a significant development, the US Food and Drug Administration (FDA) has granted approval to OJJAARA (momelotinib) for the treatment of intermediate or high-risk myelofibrosis (This includes cases of primary myelofibrosis and secondary myelofibrosis occurring after polycythemia vera and essential thrombocythemia) in adults with anemia, according to a media release by GSK.

Myelofibrosis, a rare blood cancer affecting approximately 25,000 patients in the US, often leads to severe complications such as anemia, constitutional symptoms, and splenomegaly. About 40% of patients already have moderate to severe anemia at the time of diagnosis, and nearly all patients are estimated to develop anemia during the course of their disease, as reported by the American Cancer Society.

Dr. John Mascarenhas is a myelofibrosis specialist at Mount Sinai.

With the FDA approval of momelotinib, myelofibrosis patients likely have questions about its usage and possible benefits of the drug.

Dr. John Mascarenhas (Mount Sinai), an expert in myelofibrosis treatment, highlights the unique features of momelotinib: “Momelotinib is a JAK inhibitor so it’s much like ruxolitinib (Jakafi) except there are some nuances that make these drugs a little bit different,” he says. “It also inhibits ACVR1, which is another pathway that regulates iron availability for red blood cell production.”

The journey of momelotinib to FDA approval involved the MOMENTUM study. While initially expected to be approved in late June, it faced a delay for re-review by the FDA, as reported by GSK.

Regarding potential benefits and considerations in momelotinib’s use, Dr. Mascarenhas explains, “Momelotinib is a JAK inhibitor so it’s much like ruxolitinib (Jakafi) except as I mentioned before, there are some nuances that make these drugs a little bit different. It also inhibits ACVR1, which is another pathway that regulates iron availability for red blood cell production. In its long development history, it’s differentiated itself from other drugs in large part by its ability to improve hemoglobins in a subset of patients.”

In terms of treatment, Dr. Mascarenhas emphasizes the importance of personalized care: “I encourage patients to discuss with their physicians if that drug might make sense for them or any of the other drugs that we’ve talked about, whether it’s fedratinib, ruxolitinib, or pacritinib. As we’ve said, it really has to be tailored to the patient.”

In conclusion, the FDA’s approval of momelotinib marks a significant step forward in addressing the challenges faced by myelofibrosis patients, especially those with anemia. Dr. Mascarenhas’s insights provide a deeper understanding of the drug’s unique attributes and its potential to benefit those affected by this blood cancer.

The Latest Myelofibrosis Clinical Trials

If you’re interested in learning more about the latest myelofibrosis clinical trials, explore our conversation with Myelofibrosis experts Dr. Mascarenhas and Dr. Tania Jain (Johns Hopkins Medicine), and Clinical Trial Nurse Ashley Giacobbi (The Leukemia & Lymphoma Society) as they explain cutting-edge therapies.

But there are an unprecedented number of clinical trials that, again, if a patient is out there and has myelofibrosis and things are not doing well, or their spleen is too large, or they’re not feeling well, or they’re having side effects from medicines, one or more of these clinical trials may be an option for them.

Dr. Ruben Mesa |MF Clinical Trials

Myelofibrosis Patient Stories

Stacy S.

Stacy S.



Diagnosis: Myelofibrosis with CALR and ASXL1 mutations
Symptoms: Fatique, cold hands and feet
Treatment: Agrylin (for thrombocythemia), Ruxolitinib (Jakafi), Fedratinib (INREBIC), stem cell transplant
Ruth R. Diagnosis: Myeloproliferative Neoplasms (MPN) Treatment: Chemotherapy, Bone marrow biopsy, clinical trial
Natalia's Myelofibrosis Story
Natalia A. Diagnosis: Myelofibrosis Symptoms: Anemia, fatigue, weakness, shortness of breath Treatment: Phlebotomies, iron pills, blood transfusion

Mary L.



Diagnosis: Myelofibrosis (MPN)
1st Symptoms: Fatigue, extreme dizziness (later diagnosed as vertigo)
Treatment: Pegasys, hydroxyurea (current)
Kristin D.

Kristin D.



Symptoms: None; caught at routine blood work
Treatment: Stem cell transplant
Joseph C. feature profile

Joseph C.



Symptoms: None; caught at routine blood work
Treatment: Clinical trial: VONJO (pacritinib)

Jeremy S.



Diagnosis: Myeloproliferative Neoplasm (MPN), Polycythemia vera (PV) and Chronic Lymphocytic Leukemia (CLL)

Doug A. feature profile

Doug A.



Symptoms: Fatigue
Treatment: ruxolitinib, selinexor (clinical trial)
Cathy T. feature profile

Cathy T.



Diagnosis: Myelofibrosis

Symptoms: None; caught at a routine blood test
Treatment: Stem cell transplant
Andrew SchorrDiagnosis: Myelofibrosis, Chronic Lymphocytic Leukemia (CLL)Treatment: Clinical trial, Gazyva, Jakafi, Increbic, Reblozyl and steroids

Categories
Latest News & Research Multiple Myeloma Relapsed and Refractory Targeted Therapies Treatments

FDA Approves New Treatment Options for Relapsed/Refractory Multiple Myeloma Patients

FDA Approves New Treatment Options for Relapsed/Refractory Multiple Myeloma Patients

In a significant stride forward for the field of multiple myeloma treatment, the U.S. Food and Drug Administration (FDA) has recently granted accelerated approvals for two innovative therapies, elranatamab-bcmm (Elrexfio) and talquetamab-tgvs (TALVEY).

These approvals mark critical advancements in addressing the complex challenges faced by adults with relapsed or refractory multiple myeloma, a condition characterized by resistance to previous therapies. Elranatamab and talquetamab offer renewed hope to patients who have exhausted prior treatment options, providing novel avenues to combat the disease’s progression and improve clinical outcomes.

Let’s delve into the details of these groundbreaking treatments and explore how they are reshaping the landscape of multiple myeloma care.

How bispecific antibodies work

Dr. Alfred Garfall profile

“A bispecific antibody is a molecule that’s got two arms. One arm grabs a T-cell and the other arm grabs a multiple myeloma cell by recognizing a target on the multiple myeloma cell, just like the CAR T-cell does.

This bispecific can grab a myeloma cell with one arm, grab a T-cell with another arm, bring them together, and force that T-cell to recognize the multiple myeloma cell.”

Dr. Alfred Garfall | Explore Expert Q&A on Bispecific Antibodies 

Talquetamab-tgvs FDA Approval

Another treatment option has been added for multiple myeloma patients after the U.S. Food and Drug Administration (FDA) granted accelerated approval to talquetamab-tgvs (TALVEY) for adults with relapsed or refractory multiple myeloma (RRMM). To get access, these patients must have already gotten four lines of therapy, including an anti-CD38 monoclonal antibody, immunomodulatory agent (“IMiDs”), and proteasome inhibitor. 

“Recent approvals have focused on triple-class refractory patients (refractory to IMId, PI, Mab), by using BCMA-based therapies ( ide-cel, cilta-cel, teclistamab). Talquetamab looks beyond this to patients who have progressed beyond BCMA-based therapies and offers new hope.”

Dr. Joshua Richter

The approval comes following a phase 1/2, open-label, multicenter clinical trial dubbed MonumenTAL-1, a study that included 187 RRMM patients through at least four lines of therapy as described above. The drug manufacturer, Janssen Pharmaceutical, made the announcement in this Aug. 10 press release. It’s important to note that the approval hinges on “continued approval for this indication is contingent upon verification and description of clinical benefit in confirmatory trial(s).”

Talquetamab, or TALVEY, is a bispecific antibody approved for myeloma patients, targeting the GPRC5D receptor, with a reported 70-percent of durable responses that include a patient population that had already undergone a different bispecific antibody or CAR T-cell therapy.

“Recent approvals have focused on triple-class refractory patients (refractory to IMId, PI, Mab), by using BCMA-based therapies ( ide-cel, cilta-cel, teclistamab). Talquetamab looks beyond this to patients who have progressed beyond BCMA-based therapies and offers new hope,” said Joshua Richter, M.D., Director of Multiple Myeloma at the Blavatnik Family-Chelsea Medical Center at Mount Sinai in New York.

Myeloma advocacy organizations seem aligned in offering another treatment option to people who’ve already been through so much treatment and had more limited options.

“Although options for the treatment of multiple myeloma have expanded significantly in recent years, the disease remains incurable, and therefore, patients are in need of new treatment options,” said Michael Andreini, President and Chief Executive Officer, of Multiple Myeloma Research Foundation in the Janssen release. “[The] approval of talquetamab provides patients with a new treatment approach for relapsed or refractory disease that is a welcome addition to the myeloma community.”

Elranatamab-bcmm FDA Approval

For the second time in a month, the FDA has granted accelerated approval to a bispecific antibody for refractory multiple myeloma patients. Elranatamab-bcmm (Elrexfio) is a bispecific B-cell maturation antigen (BCMA)-directed CD3 T-cell engager.

The approval is aimed at adults facing relapsed or refractory multiple myeloma, who have undergone a minimum of four prior lines of therapy, including a proteasome inhibitor, an immunomodulatory agent, and an anti-CD38 monoclonal antibody.

According to the FDA press release, the accelerated approval for elranatamab was grounded in findings from the phase 2 MagnetisMM-3 clinical trial. This multicenter, open-label, single-arm study involved individuals battling relapsed or refractory multiple myeloma, who had undergone previous treatments, including a proteasome inhibitor, an immunomodulatory drug, and an anti-CD38 antibody.

“Most multiple myeloma patients will experience relapse or resistance of their disease to treatment, often facing increased symptom burden and lowering their chance of surviving longer with each attempted line of therapy,” said Ajay Nooka, MD, MPH, director of the multiple myeloma program at Winship Cancer Institute of Emory University in Atlanta, in a press release from drug manufacturer Pfizer. “By offering durable clinical response with an established safety profile and the convenience of subcutaneous administration, [elranatamab] provides a much-needed new option for heavily pre-treated multiple myeloma patients who are struggling with relapsed myeloma.”

»MORE: The Future of Multiple Myeloma Treatment: Expert Q&A on Bispecific Antibodies 

Multiple Myeloma Stories

Clay

Clay D.



Diagnosis: Multiple myeloma
1st Symptoms:
Persistent kidney issues, nausea
Treatment:
chemo, radiation, stem cell transplant
...
Melissa

Melissa V.



Diagnosis: Multiple myeloma, stage 3
1st Symptoms:
Frequent infections
Treatment:
IVF treatment & Chemotherapy (RVD) for 7 rounds
...

Elise D.



Diagnosis: Multiple myeloma, refractory
1st Symptoms: Lower back pain, fractured sacrum
Treatment: CyBorD, Clinical trial of Xpovio (selinexor)+ Kyprolis (carfilzomib) + dexamethasone
...
Marti P multiple myeloma

Marti P.



Diagnosis: Multiple myeloma, stage 3



1st Symptoms: Dizziness, confusion, fatigue, vomiting, hives



Treatment: Chemotherapy (Bortezomib/Velcade), Daratumumab/ Darzalex, Lenalidomide, Revlimid) and stem cell transplant
...
Ray H. feature

Ray H.



1st signs: Hemorrhoids, low red blood cell count
Treatment: Immunotherapy, Chemotherapy, Stem Cell Transplant
...
Valarie T. feature profile

Valarie T.



Symptoms: Nose bleeds, fatigue, back pain
Treatment: Chemotherapy, stem cell transplant
...
Jenny A. feature profile

Jenny A.



Symptoms: Nose bleeds, fatigue, back pain
Treatment: Chemotherapy, stem cell transplant
...
Keith G.

Keith G.



Symptoms: High levels of protein
Treatment: Chemotherapy, stem cell transplant
...
Julie C.

Julie C.



Symptoms: Queasiness, food aversions, lack of appetite, fatigue
Treatment: Stem cell transplant, chemotherapy (D+PD), bispecific antibodies (talquetamab & cevostamab)
...
Erin H. feature profile

Erin H.



Symptoms: Back pains
Treatment: Chemotherapy, stem cell transplant
...
Gregory P. feature profile

Gregory P.



Symptoms: Back pains
Treatment: Chemotherapy, stem cell transplant
...
Laura E. feature profile

Laura E.



Symptom: Increasing back pain
Treatments: Chemotherapy, stem cell transplant, bispecific antibodies
...

Categories
FAQ Support

Living with an Ostomy: Discovering Confidence, Community & Choices

Navigating Life with an Ostomy: Tips from Patients and Medical Experts

Undergoing an ostomy procedure involves major changes. To offer guidance, The Patient Story hosted a live discussion with colorectal cancer patients Amy Hart and Jason Randall, who both have ostomies, along with Dr. Vanessa Wookey, a gastrointestinal oncologist from Fox Chase Cancer Center

From their real-life expertise, they offer practical advice about living with an ostomy, from diet and clothing tips to cleaning and skincare. Plus, Amy and Jason share how they wear an ostomy with body-positive confidence.

Living with an Ostomy full video conversation

https://www.youtube.com/watch?v=9cSK97yVCN8

What is an Ostomy?

An ostomy is a surgical procedure that brings a section of the intestine or urinary system through an opening (stoma) in the abdomen. Waste passes through the stoma into an external pouch or ostomy bag attached to the skin. 

Ostomies allow the bowels or bladder to function after injury, disease, or birth defects. Reasons for getting one include colorectal cancer, Crohn’s disease, bladder issues, and birth abnormalities according to the United Ostomy Associations of America, Inc.

Catherine has an ostomy and shares her experience.

“You can still do everything you could do before. You can swim and go in hot tubs. You can do everything. It’s not limiting like you might think it is. There’s so many different kinds of bags you can use, so figuring out what’s best for you is a process.”

Catherine P.| Explore her Stage 3 Adenocarcinoma Rectal Cancer Story

Seeking Support for Daily Living Tips

Jason, who has had both an ileostomy and colostomy, highly recommends joining an ostomy support community. “It’s really helpful to ask people questions and dive into the more in-depth stuff,” he says.  

Amy, who shares her experiences online, agrees. “Seeing other people, maybe four years down the road, allows you to see what your life could look like after this massive change.”

Dr. Wookey stresses the value of connecting with those living with ostomies day-to-day: “The best thing patients want is someone who can help them figure out some of the troubleshooting.”

Finding the Right Bag System

There are various ostomy pouching systems available. Jason emphasizes trying different products patiently to see what works best. 

“What one person may work well for them, may not work for another person,” he explains. He started with a two-piece system but found a one-piece pouch simpler.

Amy switched her ostomy bag based on a friend’s recommendation. “It worked out great,” she says. Reaching out to manufacturers for samples helps find the optimal ostomy bag.

Jason modeling for On The Rise, a Colon Club magazine

“Any closed system is not a good idea if you have an ileostomy, because you’d be changing it all day long. Whereas with a colostomy, it’s a little more predictable. It’s easier to manage. People tend to go with closed systems for convenience. 

I used to be a 2-piece ostomy person for both my ileostomy and my colostomy. I’ve had about 2 years of colostomy and 3 months of ileostomy. With the colostomy, I’ve gone down to a 1-piece system.”

Jason Randall | Explore Jason’s Stage 4 Colorectal Cancer Story

Diet Tips

According to Dr. Wookey, there’s no singular best ostomy diet. She advises starting with a low-fiber, low-fat diet after surgery and then slowly reintroducing foods. 

Amy adds, “I eat everything. I just introduced it in small quantities and with a lot of liquids.” She stresses thoroughly chewing food to aid digestion.

Jason recommends tuning into your body’s signals if certain foods cause discomfort. He takes supplements to relieve symptoms of obstruction when needed.

Preventing Leaks and Skin Irritation 

To prevent ostomy pouch leaks, Jason uses special rings around the stoma opening for protection. “Getting a pre-cut bag and not cutting it yourself creates a much better seal,” he says.

For skin irritation, Dr. Wookey advises gentle cleaning around the stoma: “Using just water or a gentle soap is really the most you need.” See your doctor for significant redness or wounds.

Ostomy Clothing Tips

“My life as far as using the bathroom is altered but the only part that’s really impacted by that is the part that happens when I close the door and no one’s in there with me.

[As] life does, it takes a really long time for it to re-settle down, but it does settle back down.”

Amy Hart. | Read Amy’s Stage 3B Colorectal Cancer Story

Amy suggests stretchy, high-waisted clothing styles to accommodate ostomy pouches. She also wears bike shorts under dresses for security. 

For men, Jason fuses a belt called Stealth Belt to keep his pouch securely in place during activity. This also helps prevent abdominal hernias.

Life after ostomy surgery involves adjustments. But support groups, finding optimal products, and an adaptable mindset makes thriving with an ostomy completely possible.

Colorectal Cancer Stories

 

Shannon M., Colon Cancer, Stage 1




Cancer Details:
Found the cancer as a result of her Lynch Syndrome
1st Symptoms: Routine colonoscopy found polyp
Treatment: Partial colectomy

Hugo T., Colon Cancer, Stage 1



Cancer Details: Diagnosed 2 weeks after 5 years remission from testicular cancer
1st Symptoms: Inflamed bowel
Treatment: Subtotal colectomy, immunotherapy

Rachel B., Sigmoid Colon Cancer, Stage 1



Cancer Details: The sigmoid colon (or pelvic colon) is the part of the large intestine that is closest to the rectum
1st Symptoms: Stomach discomfort, nausea, bloating, blood in stool
Treatment: Colectomy

Chris T., Colon Cancer, Stage 2



Cancer Details: Discovered Lynch Syndrome after genetic testing
1st Symptoms: Found the cancer as a result of family history, early colonoscopy
Treatment: Partial colectomy

Shannon C., Colon Cancer, Stage 2A



Cancer Details: Diagnosed at 29, tested positive for Lynch Syndrome
1st Symptoms: Severe pains after eating
Treatment: Partial colectomy
Barbara smiling

Barbara M., Colon Cancer, Stage 3



Cancer Details: Family history wasn’t flagged, should have had colonoscopy earlier
1st Symptoms: Stomach discomfort, difficult to process food
Treatment: Colectomy, Chemo (FOLFOX, CAPOX)

Shelley B., Colon Cancer, Stage 3B



Cancer Details: Had no usual first symptoms, found as a result of routine colonoscopy and endoscopy
1st Symptoms: None
Treatment:Partial colectomy, chemotherapy (FOLFOX)
Lindsay

Lindsay D., Colon Cancer, Stage 4



Cancer Details: Diagnosed at 32, cancer spread to ovary and lung
1st Symptoms: Lump in pelvic area, funny-smelling food, weight loss
Treatment: Chemotherapy, colectomy (surgery)
Lee

Lee J., Colon Cancer, Stage 4, Recurrence



Cancer Details: Recurrence then remission
1st Symptoms: Discovered stage 4 cancer from unrelated CT scan
Treatment: Neoadjuvant chemo (FOLFOX), hemicolectomy (partial colon surgery), adjuvant chemo (FOLFOX), chemo post-recurrence (FOLFIRI), liver surgery

JJ S., Colorectal Cancer, Stage 4



Age at Diagnosis: 27l



1st Symptoms: Abdominal pain, blood in stool



Treatment: Surgery to remove tumor, chemotherapy, clinical trial of Keytruda (pembrolizumab)
Haley P. feature profile

Haley P., Colon Cancer, Stage 3C



Symptoms: Constipation, fatigue, shortness of breath
Treatment: Surgery, chemotherapy
Amanda G. feature profile

Amanda G., Colon Cancer, Stage 2A



Symptoms: Gurgly stomach, blood in stool, chronic constipation
Treatment: Surgery (hemicolectomy), chemotherapy (CAPOX), Zarxio
Jason Randall describes his colon cancer journey
Jason R., Colorectal Cancer, Stage 4 Diagnosis: Colorectal Cancer Symptoms: Abdominal pain, constipation, belly button discharge Treatment: Liver surgery, chemotherapy, radiation
Angelica A., Bowel Cancer, Stage 3

Symptoms: Fatigue, anemia, irregular bowel movements, loss of appetite, heavy periods Treatment: Laparoscopy, chemotherapy, partial hysterectomy
Danielle shares her stage 4 metastatic colon cancer
Danielle A., Colorectal Cancer, Metastatic Stage 3 Diagnosis: Stage 3 Colorectal Cancer Symptoms: Abdominal pain, constipationTreatment: Surgery, Chemo
Keith shares his stage 4 colorectal cancer story
Keith H., Colorectal Cancer, Stage 4 Diagnosis: Stage 4 Colorectal Cancer Symptoms: Abdominal painTreatment: Surgery, Chemo
Sherrie shares her stage 4 metastatic breast cancer story
Sherri O., Metastatic Breast Cancer & Colon Cancer Diagnosis: Colon & Metastatic Breast Cancer Symptoms: Shortness of breath, lump under armpit, not feeling herself Treatment: Chemotherapy, Transfusions
Dania M.

Dania M., Colon Cancer, Stage 4, with Liver and Peritoneal Carcinomatosis



Symptoms: Constipation, diarrhea, terrible bloating, swollen belly, as if pregnant
Treatment: Surgery, immunotherapy (KEYTRUDA)
Stephanie K.

Stephanie K., Colon Cancer, Stage 3



Symptoms: Very bad cramps, bloating, indigestion, burping
Treatment: Surgery, chemotherapy (CAPOX)
Jason A. feature profile

Jason A., Colon Cancer, Stage 3B



Symptoms: Abdominal pressure, fatigue, small amounts of blood in stool
Treatment: Surgery (colon resection), chemotherapy (FOLFOX: folinic acid, fluorouracil, and oxaliplatin)
Kelly shares her cancer story
Kelly B. Diagnosis: Stage 3 Colon CancerSymptoms: Blood in stool, cramping, bloating Treatment: Chemo, surgery
Courtney shares her colorectal cancer story
Courtney H. Diagnosis: Stage 1 Colorectal CancerSymptoms: Blood in stool, fatigue Treatment: Chemo, oxaliplatin, capecitabine, surgery
Zykeisha shares her stage 4 colon cancer story
Zykeisha L. Diagnosis: Stage 4 Colon CancerSymptoms: Anemia, stool changes, blood in urine, back painTreatment: Chemo, Avastin, FOLFOX, FOLFIRI, surgery, Neupogen shots
Kyle R.M. Diagnosis: Stage 4 Colon Cancer Symptoms: Constipation, blood in stoolTreatment: Chemo, FOLFOX