New dx of Post ET-MF

Posted by becky57 @becky57, Sat, Oct 5 10:45am

Hi, I was diagnosis with post essential thrombocythemia myelofibrosis 5 weeks ago. I am classified as low risk, with my age of 62 being the only thing against me. I was pretty symptom free of ET for the 11 years I had it except for headaches and fatique. And now, with MF, I feel exactly the same. If they hadn't told me I have bone marrow cancer, I wouldn't have known it. I had a bone marrow biopsy (my 2nd in 10 years) to confirm the progression to MF. While I'm grateful I have no symptoms and I feel well, I'm wondering if there's anyone else out there with this cancer and wonder how they have coped, things they've done or not done to feel better, or even has a story similar to mine.

Hi @becky57 and welcome to Connect. That must be stress-relieving to have no symptoms while you cope with your new diagnosis.

I'd like to introduce you to fellow Connect members @shenriq and and @carlavan as they have experience with ET, although with different mutations and they may be able to offer you support.

Have you found anything that helps you feel better? What support have you found since your diagnosis?

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Hi Becky, my name is Carla & I am 78 years old with Essential Thrombocytosis and Jak 2 mutation. I was diagnosed about 1 & 1/2 ago. I have always been a doer and busy all of my life but the last 5 years, was extremely tired by late afternoon (in bed by 6:00 p.m..) lots of headaches. No one could find out what was wrong until my platelets started rising about two years ago. I am now on Hydrea (a chemo pill) and 81 mg. aspirin that attacks the platelets and keeps them in the normal range. I am still tired often, I still have headaches, but over the counter medicines help and I am very grateful to know that I will most likely die with this cancer and not from it! I still have all my hair, I am thankful and grateful everyday & I wish the very best for you. I truly believe if we learn to live with our diseases, they will not consume us and we can continue to be productive. By the way, just a side note, often I still go to bed at 7:00, but I love horses and muck stalls when the weather is nice and love to work in the garden and can my produce. I hope you keep in touch!

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@becky57, In addition to Ethan's welcome, I'd like to also invite @lisadej1, @akiannejad123, and @mjpm2406 who have all discussed essential thrombocythemia on Connect as well. @becky57, @carlavan shared some great words on living with ET and staying positive despite a tough diagnosis. How have you coped with your diagnosis?

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Hi Becky,

I have MDS/MPN overlap with Thrombocytosis and I'm also in the early stage of MF. I gave multiple gene mutations including the JAK2, SRSF2 and SFB31 genes . I was diagnosed at Sloan and like you I really have no symptoms other than some fatigue. But I'm 73 so some of that fatigue may be related to my age. I'm the same weight as I was when I was 25 so being active and relatively healthy probably helps. I also go to the gym 3 to 4 times a week and walk with my wife several times a week. I've never had a headache in my life and happily I can still say that after my diagnosis. The Leukemia group at Sloan said that while I have multiple blood cancers they are not overly concerned at this point. They indicated that my treatment plan is to have monthly blood work to determine if I'm stable or to determine if my blood cancers mutate to something more problematic. I'm currently on a daily Hydroxyurea treatment regimen because my platelet count was 847,000. It is now around 230,000. All my other blood numbers appear to be within or near the normal range. Sloan said there is a 30% chance of mutation to full blown Leukemia but a 70% chance of no mutation. So go live your best life and let the Leukemia group monitor your blood numbers. Good luck.

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