Published on August 30, 2021
One Myelofibrosis Patient’s Clinical Trial Experience
Ruth Fein was diagnosed with essential thrombocythemia (ET) at the age of 43. Decades on and having progressed to myelofibrosis (MF), Ruth Fein is participating in a clinical trial that requires her to travel three hours to New York City every three weeks. Follow her as she travels and reflects on her experience as a participant in a clinical trial.
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Transcript | What Does It Take to Participate in a Clinical Trial?
Ruth’s Clinical Trial Story
Ruth Fein: Hi. When I decided a year and a half ago to enter myself into this clinical trial, it never occurred to me the details, even though I read them and signed them. I think it's the best thing I ever did because, of course, it's made me healthy. But just to give you a little window into what has to happen here. Every three weeks, there's something else. It's always blood work. I think every four months, I have an MRI to check on the size of my spleen. And then, every five months or so, give or take, I have to have a bone marrow biopsy.
I travel into New York every three weeks, which is about three and a half hours, and three weeks seem to come and go really quickly.
So, here are all the things I can't forget tomorrow morning at six o'clock. And I'm not a good morning person. I have my empty bottles, and I have a diary that I need to fill out every three weeks and a symptom assessment form, et cetera, et cetera.
I'm on a drug for two weeks, and then I'm off for a week. The week I'm off, I do a symptom measurement sheet where I, every day, rate a certain number of symptoms. What that does is not just remind me that this is important, but it also keeps me very aware of my symptom level, which I never was. I used to always say I was asymptomatic, when in fact, I was not really asymptomatic. I just blew it off as not related or not big enough to be bothered with.
I'll leave early tomorrow morning and try not to be anxious about my bone marrow biopsy. The only thing I'm really nervous about is the IV. We'll get up at the crack of dawn and hit a train.
What Advice Do You Have for Other Patients Who May Join a Clinical Trial?
I think it's important not to forget that you can advocate for yourself even with a clinical trial that has set protocol. For instance, I'm doing my bone marrow biopsy with interventional radiology. The protocol was without sedation, and I had a really bad experience my first bone marrow biopsy. And I just said, "No, I'm not going to do this." So I negotiated that. They were fine with it. Also, when I go into New York, if I have to be there for two procedures and blood work and a doctor's appointment, I can't fit all of that in with a three-and-a-half-hour train ride in each direction. I said, "I am willing to do all of this, but I can't do all this in one day, and I can't afford to come and stay in a hotel every three weeks." So, they put me up in a hotel. They didn't offer that. I asked for it.
So I'm all settled in. I'm going across the street in a few minutes to get set up for my bone marrow biopsy. I'm sure it will all go well. I will catch up with you after.
Hi, I'm back overlooking busy First Avenue in Manhattan. Everything went great. I'm a really hard stick with an IV. It always takes them four or five times, and everybody gets frustrated. So, I mentioned it yesterday before I got here. And a big surprise to me, they sent over an IV specialist from the hospital across the street to where I was having the procedure, who got me first stick. It took a lot of anxiety out of the whole process. For me, I get more nervous about the IV than the bone marrow biopsy.
The emotional response to being in a clinical trial is obviously very personal. For me, I didn't deal with my disease for decades. I was told early on it wasn't going to affect my life much. I had essential thrombocythemia at 43 years old. So for me to enter the clinical trial was just one more step in the process of my acceptance, and it honestly didn't freak me out. To tell you the truth, it made me very excited that there was another hopeful option. And again, that I could help others that maybe weren't in the same position.
Danny Revell: Cheers, my love.
Ruth Fein: Cheers to you.
Danny Revell: My name is Danny, and I'm with Ruth, my beautiful bride. And we just got such wonderful news yesterday.
What Stage Is Your Myelofibrosis in Today?
Ruth Fein: I got the results from my bone marrow biopsy this week, and there is zero, as in zero, evidence of fibrosis in my bone marrow. A year and a half ago, when I started this study, I was at two, which was intermediate. It started to go down toward one, and now, it's at zero. And I have all mature stem cells, which means the fibrosis isn't getting in the way of healthy bone marrow at the moment. It's just pretty extraordinary. So, we needed to say cheers to that. And cheers to good research and taking a chance and good results, and most of all, hope.