My Myeloproliferative Neoplasm Diagnosis

By shellydawn73

1 min read

I was diagnosed with a myeloproliferative disorder 5 years ago. My white blood count runs a little high, but the trouble is my platelets. I recently starting doctoring with a new oncologist after mine retired. He has taught me a lot about my disorder and having thrombocythemia.

Making progress

On my first visit, my platelets were 900. Having no other choice, I started taking a chemo pill. My platelets are slowly coming down after 4 months of taking this medicine. My doctor will be able to decrease the medicine dosage once we get down to 500.

My heart goes out to each and every person who has shared a story. Many prayers for all of you. Is there anybody out there with the disorder that I have?

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Daniel Malito Moderator
<inline-mention user-id="3655552" username="shellydawn73"/> I don’t share your exactly illness, but I did share your medical adventures, so to speak. Chemo, platelets, and all of the above. It’s certainly a daunting thing, isn’t it? I’m glad to haer it’s working, though, and we are here for you no matter what. Keep on keepin’ on, DPM
1. mpn-nhl-mike Member
 Shelly, did you experience headaches before your diagnosis? And have you had a genetic make up done, blind test wise? Just curious, if you dont mind. Mike
2. shellydawn73 Member
 Hello. When my family doctor realized my counts were far from normal she sent me to an oncologist. He did bloodwork in which he found i tested positive for JAK 2 gene. From there he did a bone marrow biopsy. I did suffer from migraines frequently. The oncologist i was seeing retired and i went a year without seeing one. Big mistake. My new oncologist is great and is helping me along. The exhaustion is one my chief complaints. My friends feel i need a second opinion. Im not sure about that because im happy my counts are getting back to normal.
mpn-nhl-mike Member
Ah, a fellow sufferer. I believe we have the same cancer, myelofibrosis. It all started with headaches, daily, terrible, headaches. I finally went to my PCP with tears asking for help. She gave me pain meds via injection and did bloodwork. My platelets were 904,000. On my own, I did the research and found that myelofibrosis was the only answer. I made apt with an oncologist, who did complete bloodwork and bone marrow biopsy. When the cancer diagnosis came back, I went to Dana Farber in Boston for a second opinion. It was confirmed, but I did not yet have the JAK2 conversion, but they said it would definitely show at some point. They gave a prognosis of 8-10 years. That was in 2011, and before the addition of my Non Hodgkin's lymphoma. So I now deal with both, plus a whole list of related ailments, fatigue being at the top of my list. I get up in the am, have coffee, and take a nap. Then sleep on and off throughout the rest of the day. When I applied for disability, it got approved on the first attempt, so I've been on that since 2012. My days go up and down. I have more specialists than I can type here. I went through chemo, rituxan, and that did nothing. Second round of chemo added bendumustine (spell), to the rituxan. That mixture shrunk my NHL, but did nothing for the myloproliferative issue. So now it's just bloodwork every two weeks, and oncologist visits monthly. Bloodwork looks good, but fatigue is out of control. Sleep is my favorite word. I tell my doctors I can do anything others can do, but only for a brief time, then I'm done for the day. If I do too much, I'm down for the next day also. My condition, symptoms, ability, and status are different than probably anyone else. Along with the myelofibrosis & NHL, I've had surgeries to remove lymphnodes, removal of an adrenal gland, a tumor in my thyroid, severe arthritis in my knees, shoulders and back, and other things that persist daily. Related to you, I take hydroxyurea (500mg) daily, along with 25 other pills daily. I'm male, 57. I'm tired of writing, but if you have specific questions, please ask. Good luck.
1. Ann Harper Moderator & Contributor
 You have a lot going on. I hope you can find some type of relief from your fatigue. Good luck.
2. shellydawn73 Member
 Thank you for your reply. I wish you the best of luck. Bless you
Ann Harper Moderator & Contributor
I don't have your disorder, but I wish you the best as you move forward on this journey. Please keep us informed.
1. shellydawn73 Member
 Thank you! My plateletes are coming down. I am currently on the chemo pill every other day. I still feel exhausted. I tired i can not describe. I am happy my blood count is getting back to normal. Bless you and take care.
rhonda Member
Hello fellow MPNers I was diagnosed with Polycythemia Vera about 6 years ago. I'm triple negative for the JAK2 mutations. Early on I had a BMB. I get regular therapeutic phlebotomies and have high white counts as well as red counts. I've had two TIAs. The exhaustion is our worst symptom from what I hear from my other on line MPN friends. Staying as stress free as possible seems to be important as well as a good support system, although I get my treatments alone. To those of you who have commented, know that you're not alone in this journey.
1. shellydawn73 Member
 Wishing you the best of luck. Thank you for your reply
shellydawn73 Member
Thank you all for your replies
Deb Wesloh Moderator & Contributor
I am assuming you have essential thrombocythemia, correct? have polycythemia vera which is also considered a MPN. I have high platelets too. I would be interested on how you are doing with the treatment you are currently on.