Tag Archive for: myelofibrosis symptoms

Myelofibrosis Care | Impact of Diet & Lifestyle Modifications

Can diet and lifestyle help manage myelofibrosis symptoms? Dr. Pemmaraju explains how the Mediterranean diet and practices like yoga may improve quality of life for patients. 

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

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Transcript:

Katherine Banwell:

“Can diet play a role in either manifesting the disease and or helping with healing? Also, how important is exercise to the healing?”  

Dr. Naveen Pemmaraju:

I give a lot of credit to this area, to my colleagues, Ruben Mesa, Dr. Angela Fleischman, and Dr. Robyn Scherber. A lot of data that’s come out of these groups, which has shown two major findings in our MPN patients of potential clinical significance. One is as the questioner is asking about diet. It is true that we’re, several studies are pointing towards the anti-inflammatory Mediterranean diet as a potential benefit to our patients with MPN. Lots of different ideas there when they measure cytokines. 

These abnormal protein signatures that are in MPN patients can cause fatigue and some of the bad quality of life can be dramatically improved in some cases by following a strict Mediterranean diet over weeks and months. So, that’s something important. People should check it out. Obviously, diets have to be addressed with each patient and each provider because sometimes a diet may work for someone and not for you because of comorbidities, vitamin deficiencies, electrolytes, etc.  

Then the second aspect, if I may include in this question, is also the concept of yoga/meditation. Dr. Ruben Mesa and others have shown, the same thing, that you can have a potential downregulation of some of these abnormal cytokines. However, the caveat is it must be done right with a guided trainer in a real program over a certain period of time. What I think both of these non-pharmacological interventions tell us is that there are things beyond medicines and pills that may really help our patients in some aspect of the disease.  

Well, if that aspect is fatigue, night sweats, headaches, I think that’s a really important thing. So, let’s say together on this program that these data sets are evolving, they’re interesting, they’re intriguing. For some people, it may be an easy incorporation. Frankly, some people may already be doing these things, but as you ask nicely, let’s include in the discussion non-pharmacologic as we heavily investigate the pharmacologic as well. We’re all open to that. Let’s see the data, and the data is evolving.   

Staying [ACT]IVATED: My Journey with Myelofibrosis and the Power of Proactive Care

As an avid climber who made healthy choices, Jason never envisioned he would be diagnosed with myelofibrosis (MF). Watch as he shares his path to diagnosis, challenges with finding a good fit for an MF specialist, and advice for optimal care. 

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Novel Therapies and Clinical Trials for Myelofibrosis | Updates and Innovations

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Transcript:

Being informed and proactive is crucial in managing myelofibrosis, a relatively unknown blood cancer. My name is Jason, and I was diagnosed with myelofibrosis at age 46. Being an avid climber and overall a healthy person, the news came as a huge shock. Now, with my experience, I want to share my story to help others who might be experiencing unusual symptoms, just as I did. My desire is to raise awareness and to stress the importance of early detection, ultimately aiming to improve outcomes for all those affected by myelofibrosis.

Even though I didn’t realize it at the time, my myelofibrosis symptoms began with fatigue and abdominal pain. I dismissed the symptoms and didn’t see my doctor until I noticed that my skin had become strangely itchy. My doctor ran a full blood panel and referred me to an academic cancer center. I was fortunate that I lived in the same city, but it made me think about what would have happened if I lived in a rural area. I received further testing followed by my diagnosis of myelofibrosis.

I was referred to a doctor who specializes in treating myeloproliferative neoplasms (MPNs). I met with the doctor but wasn’t sure that she was going to be the best fit for me. I’m a naturally curious person, and she didn’t seem open to answering a lot of my questions. After connecting with some other myelofibrosis patients in an online support group, I decided to meet with another specialist to see if I could find a better match for my care. I was fortunate to find a good match with the next MPN specialist. I’ve been under his care since, which started with active surveillance followed by an autologous stem cell transplant. My transplant was incredibly challenging, but my myelofibrosis support group was always there for me with words of support and taking action to support both my wife and me during my treatment journey.

Following my experience with myelofibrosis, I’ve become dedicated to educating others about its unique symptoms to raise awareness of this type of blood cancer. Like me, you can empower yourself by connecting with patient advocates and support groups that can assist you in navigating your healthcare journey.

Stay [ACT]IVATED in your myelofibrosis care with these tips:

  • Ask your care team questions to learn about the status of your treatment options, and what to expect during and after treatment.
  • Join a patient support group to offer and to receive emotional support. This was a saving grace for me and my family.

These actions for me were key to staying [ACT]IVATED in my myelofibrosis care.


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