Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.
Randy:
Hi, my name is Randy Riley. And my daughter has the essential thrombocytosis. But I had a question. She just recently decided to alter her diet to be vegan. And her platelet levels have dropped from the high 800s down to the 500s. And then, we were feeling glad. And then, we read things on some of the support groups even that that could be an indication of it progressing.
Like if it gets back to a normal range that could be not a good thing. So were just really confused about that.
Beth Kart Probert:
Well, and that’s a great question. Dr. V, can I ask you to address that question?
Dr. Verstovsek:
Okay. So there are two aspects of this. One is the change in diet. I think that change in diet to vegan, if it suits you, and you do enjoy that type of diet, and it makes you feel better, along with the exercise along the lines that we discussed, that’s really good. There is no real evidence that the diet would change the outcome of the disease or prevent the clot or progression. It just makes your quality of life possibly better. But it has to be individualized. So we do not really advise patients to change to vegan diet. But it’s good to do it if it fits you.
The other issue is the progression. Progression is not just the change in the blood cell count. The blood cell count becomes in your testing is a reflection of the bone marrow activity. So, one would say, if there is some change from high to lower, that might be progression. But this is also related to the type of white cells, the degree of change, continuous change, not just one time, change not just in white cells but also in platelets and red blood cells, progression in the size of the spleen, and systemic systems, which would be weight loss, bone aching pains, night sweating, and low grade fevers.
So this is a complex progression in multiple aspects not only in one. And knowing that the blood count can be affected, in your case, affected perhaps by the diet. In other cases, perhaps affected by inflammation that is happening at the same time in the body or by the medications that one takes or by when the sample was obtained or by the laboratory setting.
There are many variables that affect the numbers. One needs to really look at the person overall, not just one number, so not to be too anxious about progression. If it’s going to happen, it’s going to happen in multiple ways that will be easy to understand by the doctor and by yourself over longer periods of time, not overnight.
Beth Kart Probert:
Thank you. Great feedback.
Samantha Trahan:
Beth, can I jump in for just one more minute? You have on your patient panel people who have had disease for a long time. And I can tell you, it’s so easy, as a patient, to look at one report. This week, my platelets are high or low. Or my white cells are high or low. Or what’s this change? I have a blast, a 1 percent blast or not. That one report doesn’t matter, and it’s hard to let go of that as a patient.
But that one report, honestly, does not matter. It is only when you see consistent data that you can identify an issue of importance that’s coming up. And I keep my own data. I know MD Anderson also keeps my data. But I keep my own spreadsheet. And I’ve marked mine so that I can see what my counts looked like when I was taking pegylated interferon (Pegasys) or momelotinib or not on treatment. Or when was my last phlebotomy? So when I get a crazy result because it happens every once in a while, I can look back at my own data and be like well, it’s actually not that crazy because it happened last year, or it happened five years ago. And to let go of that one report and really focus on your own overall health.
Beth Kart Probert:
Samantha, that is excellent advice. I’m glad you jumped in with that. And I always like to tell people who are newly diagnosed before our diagnoses, we weren’t having our blood taken sometimes every four weeks. And we didn’t know what the heck our platelets were doing or whatever. And we do, sometimes, we’ll see our results. They’ll have a critical or a high next to them. And it can be very shocking. I noticed that, in one month, everything went haywire. But, four weeks later, it went back. So, again, it’s the points of communication with your care team.
Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.
