Coronavirus and MPN Clinical Trials: My MANIFEST Story

Ned Weinshenker was diagnosed with primary myelofibrosis in November 2018. He first shared his story with Patient Power in How I Advocated for a Clinical Trial. Here, Ned provides an update on his treatment and how he is coping with the COVID-19 pandemic.

I have continued to participate in the MANIFEST Clinical Trial of CPI-0601 (Constellation Pharmaceuticals). The clinic and the sponsor have been very flexible with my visits since I must travel 800 miles from home to the UCLA Clinic where I am enrolled in the study. Luckily, the drugs that I am on are all taken orally, and they can send me doses for each three-week cycle.

Coronavirus Travel Tips for Cancer Patients

Since I have several co-morbidities that would make contracting COVID-19 dangerous I have chosen not to fly at all, but drive. Luckily, I have friends that are allowing me to utilize their winter home in southwest Utah as a stopping and resting point both going to Los Angeles and returning to my home in Providence, UT.

I carry all my own food for the trips and do not frequent any restaurants. I stay one night at Tiverton House in Westwood Village, which is primarily for patients of the clinics at UCLA and I assume is very carefully cleaned. I also carry a spray bottle of isopropyl alcohol in the car and use it to clean my hands whenever I pump gas or after using a public restroom.

When I am driving, I try to find rest stops where the restroom doors are propped open and the interiors have good ventilation, so I do not have to touch any surfaces. I always wear a mask whenever I make a stop and carefully stay far away from others who are not masked.

Normally I have had to be at the clinic every six weeks. However, they have agreed to let me get local tests and an examination by my local oncologist if I do not require a bone marrow biopsy or MRI. So lately, I only need to travel to UCLA every 12 weeks. This has significantly simplified life and hopefully, they will continue to allow me to do this.

Update on My Primary Myelofibrosis

As far as my condition is concerned my need for transfusions has decreased. For the first nine months it was every 3-4 weeks, then for a while every six weeks, then every 10 weeks and the latest one was 13 weeks! My constitutional symptoms are mostly non-existent, and I have been able to live a relatively normal (PMF/COVID-19) life. I still walk/hike several times a week averaging about 12-15 miles/week to get exercise which I feel is helpful to my health.

Managing the Side Effect of CPI-0601: Dysgeusia

The worst side effect of the CPI-0601 seems to be taste modification (dysgeusia). Some foods have lost most of their flavor (e.g. bread) and many just have an off taste that is unpleasant. From the reports, this is known for the study drug and 14%-28% of patients in the five cohorts experience this.

I have tried many ways to combat dysgeusia. The only things that work are eating more flavorful foods such as pizza and spicy meats. Lately, I have been utilizing freeze-dried Miracle Fruit berries. They are from a West African plant and have long been known to have a protein (Miraculin) that affects the taste buds to make acidic foods taste sweet. The effect usually lasts from 15 minutes to one hour. I usually only use it before dinner and now I can eat tomatoes again. They had been tasting awful before.

IHC Logan Regional Hospital Infusion Center
The team at IHC Logan Regional Hospital Infusion Center. Ned says, “The nurses/aides that work there are the best!”

Frequency of Blood Draws and Transfusions

I do need to get weekly blood tests and occasional transfusions which are done at the IHC Logan Regional Hospital Infusion Center. The nurses/aides that work there are the best! It is a pleasure to have them take care of me for blood draws and transfusions of red cells. I always feel cared for and safe in that environment.

Due to the many transfusions over the past 18 months, I have needed iron chelation therapy. This is an oral drug that is easy to take as a suspension but carries a lot of potential side effects. The one that I have been acutely aware of is decreased kidney function. I have had to stop the iron chelation therapy several times to let my renal function recover. So far it has been easily reversible in a few weeks.

Currently, I am off the therapy since my transfusions are less often and we are seeing if the iron load stays stable or potentially slowly drops on its own. My local hematologist monitors my kidney function weekly and ferritin levels occasionally and will determine when, or if, I need to resume the therapy.

Being Proactive in Learning About MPNs

Each of us copes with these myeloproliferative neoplasm (MPN) cancers differently. For me, more knowledge about my disease reduces my anxiety. I read about MPN’s regularly and attend many of the online webinars and download and read newsletters, such as the ones on Patient Power and the MPN Foundation websites. I participate in the databases that are collecting genetic information to study markers of progression in disease. I am also a member of the MPN Foundation Impact Council and help guide the direction of sponsored research.

I hope that readers of this blog find this information helpful. I would be pleased to email or video chat with any MPN patients who would like to discuss this further. Please email to get in touch. The Patient Power team will pass along your message.

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If you are a Myelofibrosis patient interested in participating in a clinical trial, use our online tool to start your search. For other MPNs visit the MPN Research Foundation to find open trials.

This article was originally published September 29, 2020 and most recently updated April 9, 2021.
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Ned M. Weinshenker, PhD, MPN Patient and Advocate: