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JAK2 Mutation - Effects and Questions
Blood Cancers & Disorders | Last Active: 2 hours ago | Replies (296)Comment receiving replies
Thank you so much for all your encouragement, you are super positive & determined to keep going, which is half the battle. I believe that some medical staff have a tendency to 'write off' older folk! I am 76 & was diagnosed 2 years ago with Polycythaemia Vera Jak2 mutation. I always thought it came under blood cancer category. What a relief when I read your explanation of the condition. Am on Hydroxy 3 days a week. Havn't had phlebotomy since January this year as Hct was 45 or under.
I had started off with Hydroxy on alternative days, combined with phlebotomy. The higher doses of Hydroxy initially were leaving me exhausted with little energy. I informed my Haematologist of this, he gave me 3 options,
1 to change to another med.
2 to reduce Hydroxy to 3 days a week
3 To have regular venesections only without any med.
I opted for Hydroxy, and have wondered since, if I had opted for venesection only, how would my platelet count be? 6 weeks ago platelets were 434 (Normal range = 140-450). Have a consultation on Monday 20th Nov. so hopefully platelets won't have increased since?
In addition, I am on daily warfarin since the year before my PV diagnosis, due to a clot in my leg. Was on warfarin for 6 months back then, taken off after 6 months, approx 3 months later I developed a clot in my lung which led to investigation for Polycythaemia, which was positive. I asked Haematologist assistant if it was necessary to be on warfarin & Hydroxy concurrently, he couldn't give me a definite answer! To be very frank, I find having to go to the warfarin clinic weekly more stressful than attending the Haematoligy clinic every 4 to 6 weeks.
Just wonder if anyone else on here is on a combination of warfarin & Hydroxy. I cannot be changed over to Apixiban from warfarin as am on another drug which interacts with Apixiban.
Well done on your determation to remain a carer for your son & manage your own health issue by just getting on with life.
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@mags17 It is lovely to hear from you.
I've been on baby aspirin. Five years ago I was on Warfarin.
On my! My skin tears and I bleed for hours. That should not happen. I can blame it on the docs who did not watch my blood counts well enough - or the schedulers who would not get me in for labs. But it boils down to that I have to advocate for myself by stopping being "such a nice girl that I was raised to be."
You said, "To be very frank, I find having to go to the warfarin clinic weekly more stressful..." Yep, I can understand. Can you share why that clinic is more stressful? (Besides the fact that you are 76. I'm 73. and find that some clinics are a royal pain in the arse. For weird reasons - I hate going.)
The meds will have to do with what your blood counts are. My son is on Eliquis, a blood thinner because he has blood clots in his lungs due to inactivity. He would get blood pouring into his catheter - I had to stop the drug without doctor orders because no one had the time to call me back for days, basically. Fortunately, I made the right call. That is too stressful to make that call without a doctor's order - I don't recommend it.
You may want to try to call the pharmacist to ask if you can word your question better to the doctor. (Tho' you are very articulate in your writing.) Getting information from the pharmacist is their job. It may be he/she can call the doctor to help get an answer to your question.
Side note: I was reviewing the paperwork on Eliquis. I must have forgotten or did not think about it, but he is not supposed to eat or drink Vitamin C within a few hours of that med as it interferes with the function. I'm not sure what that means exactly. I give him juice in between doses.
Warfarin and Eliquis are different drugs. But, you may want to ask the pharmacist if anything like that affects your med.
At my hematology clinic, we have a pharmacist who visits me every doctor visit. Her job is patient education. I enjoy picking her brain.
I hope I have shared some helpful ideas. It is nice to chat with someone else who has similar concerns.
NoNon-cents