Since May 2018 my husband’s platelets have been rising and are now at 908. Neutrophils are also a bit high at 7.9 and Haematocrit at 0.49. All very technical and neither of us are sure how worried we should be. Thought someone out there might know. He’s just on venesections and clopidrogel and they’ve had problems getting the blood out as it is so sluggish. His age is 59 and he was diagnosed 3 years ago. He’s pretty proactive and he made a video link appointment with our nearest haematologist for 2 July. Meantime, is there anything he could do, self help- wise? He already drinks gallons of diluting juice every day. Also, at the appointment they’ll discuss possible new medications and I’m a bit concerned that being so remote they won’t have all the best options to offer. And anyway, what ARE the best options anyway?
Trying to stay calm but I can see the stress in his face. Any comments, suggestions etc welcome!
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MarybellM
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I am thinking the diagnosis is polycythemia, but not sure. Would think the docs would be considering one of the chemotherapies at this point. Hydroxyurea (HU) is a common first choice. Pagasys (peg-interferon) and Jakafi are other common choices. HU is the cheapest med and has been around a long time so the docs know of it. Not everyone (me included) can tolerate HU. Pegasys and Jakafi each have benefits and different risks. It is important to understand how each of these meds work and what the risk-benefit profile looks like for each individual. There are also things the docs frequently forget to tell patients. (e.g if one member of a sexually active couple takes HU, barrier (condom) contraception is recommended as HU passes into semen/vaginal secretions). All of the chemotherapies have their own potential adverse effects, so you have to work with the doc to figure out what is best for you. We are all different in how our MPN presents and respond differently to the meds. Re. the phlebotomies, they do get easier as the blood gets less viscous. All the best to both of you.
Thank you so much for such a detailed and honest response. Yes, I forgot to say my husband has PV. I sometimes feel that with this illness there’s more onus on the patient to take charge of the care. The haematologist seems out of reach and unavailable. Our GPs are pleasant but do they really know enough about it to advise? I feel there’s no-one to ask questions such as how serious is this platelet count? Should he push for a sooner appointment? Is there anything in particular he should do/not do? Etc. Etc. That’s why I’m so grateful for your reply and this forum. Much appreciated.
I found an MPN-expert consulting doc on this list pf patient recommended docs mpnforum.com/list-hem/ . I had to travel close to 2 hours to go see the more specialized hematologist, but it was worth it. This doc is the Director of the MPN Clinic at Johns Hopkins hospital and now consults with me and my regular hematologist re. my treatment. He has a different perspective than many docs based on having treated hundreds of MPN cases rather than just a handful. He does not always agree with my regular hematologist or even with the "Standard" treatment packages. I find his input very useful in that he bases his recommendation s on my individual presentation of PV rather than the generic treatment approach. Here are a few tidbits I have learned - it is not just the platelet count that matters. Leukocytosis and erythrocytosis in combination with thrombocytosis is what creates the greatest risk.
It I also important to understand the role that the JAK2 mutation plays in the disease process. Here is a previous post with some more information. If your husband does not know what his mutant allele burden is, the test is called a JAK2 Mutation Quantitative Analysis (or similar).
JAK2 = Janus Kinase 2 gene. The JAK2 gene is comprised of a set of alleles. When some of these alleles become mutated, then you are JAK2+ - typically results in either ET or PV. The percentage of the alleles that are mutated = JAK2 Mutant Allele Burden. Speaking broadly, people with a JAK2 burden less than 50% will have a milder course of the MPN. There are a number of factors why this is so. JAK2 signaling drives hematopoiesis (thrombocytosis, leukocytosis, erythrocytosis). It is also thought to trigger thrombosis. Emerging research is focusing on the role JAK2 signaling play in increasing the production of inflammatory cytokines. The cytokines appear to be responsible for many of the secondary symptoms we all experience.
There is a lot more out there on these topics. Takes a bit of effort to find the information - but knowledge is power and worth the effort. Hope this helps.
Wow - thank you for such a detailed post. I only just noticed it - so sorry for not acknowledging it earlier. I’m now going to go through it carefully and read all the links. I am so genuinely grateful and overwhelmed that you took time to give such a thorough response to my question.
I agree with the excellent post above...see a MPN specialist. I don't think there is much you can do to bring the platelet levels down in the meantime but he has the right idea by staying hydrated.
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