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Essential Thrombocythemia: Making treatment decisions
Blood Cancers & Disorders | Last Active: 1 day ago | Replies (323)Comment receiving replies
I was diagnosed with ET in 1992. I was 46. It was found on a routine office visit. My platelets were 1,700,000. I was put on Hydrea. A year or so after that I tried Agrlin (is that a good spelling) but was unable to take it. I thought I got along really well with Hydrea. Lost a few hair on my head an the hairs on my arms and legs. Then about 2023 I began having trouble with UTI and skin cancer. No one had told me that skin cancer was a side effect. Not really sure they knew what would happen when someone took it for 31 years. Long about that time I was told there was a new test and would I take it. SURE!! After this test, I had a new dx: ET/CALR and I'm a bleeder. Then this year my doc told me about Jakafi. My sister, nephew and son all in medicine, encouraged me to take it.
I was having UTI every month to 6 weeks and one of the side effects of Jakafi was severe infections. My doc really wanted me to take it. On April 18, 2025 I took my first Jakafi. It's not for ET but it lowers platelet counts. Started slow but as of this month my platelets are about 500. Jakafi also has a side effect of skin cancer so I will have to stay on that. The minute I quit taking Hydrea, my UTIs stopped. Now remember, I had been taking chemo for 32 years. I do feel different on Jakafi. My son says, Hydrea gave me time to live but then it began to kill me. I'm grateful to Hydrea because I got to see my children grown and successful and my grandchildren in college. I've had a wonderful life and part of that is because of Hydrea. I am now 79.
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Hello @sanjb,
I have a similar story. I was diagnosed with ET in 2002 at age 49. I am now 71 yo. I have been on Hydrea since age 60. Still doing well. I get my blood drawn monthly and see the oncologist hematologist every 3-4 months. I am a triple negative but my oncologist says my platelets and how I respond to hydrea seems to indicate I have similarities to patients with CALR. Good luck to everyone. I think finding a good hematologist who specializes in ET/PV is key to survivability of this rare cancer. Also Baby aspirin has helped me not have any blood clots so far.
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@sanjb My story is not as extended as yours, but I was on HU for about 5 years, constantly increasing dosage to keep platelets in a "safe" range. Then had really bad issues and move to Jakafi 3 years ago. It has kept platelets under control, but symptoms still progress - for me especially fatigue and related; this can really affect your QOL. Hoping to start a phase 3 clinical that may help with this.
Yesterday had my first screening for this clinical - typical blood test (and extra tube) and bone marrow biopsy - also had to take 2 cores. I know many worry about the BMB, but these being my 5th and 6th in one day, just relax and they are not too bad. As I joked with the tech taking the samples - Lidocaine is our friend - mine as I do not feel much and what I do is not really pain per se just a bit of pressure and for him, I do not jump or move and it is less stress for both.
Wish all well in their journey, just know there are many support areas to take advantage of, don't pass on them. I have found a friend with PV, we get together often - not the same but similar - that we can discuss our experiences (both on Jakafi).