Essential Thrombocythemia: Making treatment decisions

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.

@emma1971 I took Hydroxyurea in the 90’s for about 4 years. I did great on it with no side effects. I had ET. 6 months ago ET progressed to MF and presently not on medication. Wishing you well.

@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).

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.

@nohrt4me I have had the FNA they did do anaesthetic, so that was good. Had to do 2 lots, had 2 large nodules they wanted to get biopsies from, so had to have anaesthetic for each one. Should have answers next week. Was very happy with how it went. A bit bruised but okay. Fingers crossed 🤞

@lynnevb do you have ET or have you progresssed to PV? Why does your doctor say you have similarities to Cal R patients? I am also TN and trying to understand what that means in terms of my future treatment options.

@lynnebgraham Glad that went OK with anesthesia! Relief to have it over, eh? Keeping my fingers crossed for results next week. Let us know. Would be esp interested in any connection between these thyroid deals and ET or HU. Rest up!

Thank you, Jean, it really makes it a bit easier having someone who is going through a similar situation. I do not actually have any problems with my thyroid, other than the nodules on each side. It worries me that they are getting bigger, I will ask my GP for a referral to a throat specialist, surprised that he has not done that already.
Cheers Lynne

@lynnebgraham Yes, any mysterious lumps that get bigger are always worrisome and involve needles. Like you, my thyroid tests are always normal. I see the GP Nov 3, and the neck lumps are on my list.

I was diagnosed with ET back in May of this year. I am 71 years old, and had no symptoms other than the increas d platelet count. Initially, after a bone marrow biopsy, my doctor put me on a daily baby aspirin. After a few months, when I went for my follow up, my platelets increased, so he decided to start me on one daily 500 mg Hydroxyurea. I was resistant and frankly scared to take it. One month later, my follow up blood work indicated my numbers dropped over 100 points.
I will be going for monthly blood work and monitoring until my doctor feels numbers have stabilized.
I continue to eat as healthy as possible and take daily walks.
Prayer is definitely part of my daily routine!
I feel everyone must make a personal decision that is right for him or her. Wishing you the best and may God guide your decision .