Hesitant on starting Hydrea for ET Jak 2

@scienceteacher
I agree with you. I have been taking HU for a couple of years. Am 79, and believe that being tired after lunch is ok. A nap takes care of it, and I go again. I take it five-days a week and platelets are hanging around 450 down from 550 when diagnosed. I do drink wine several times a week, eat healthy, am about 15lbs overweight, and walk my dog twice every day. I cannot take aspirin so I don't. I love this forum for the ideas and support.

Hi @ladyplumber7 ,
I feel for you. The doctors who are supposed to be experts and care for us as their patients really do not in many cases. I have been similarly frustrated with my experience after being told I have blood cancer 1/2025 from a routine blood test that showed high platelets 12/2024. I also have had four basal cell carcinomas removed in the past and just did not care to even take Hydrea and never have. I asked and read about other FDA approved med options but they come with side effects too. Some are just a lot more expensive and really are not a cure according to a medical doc I actually trust, a bone marrow transplant surgeon, who told me that. So I just take low dose aspirin most days. What really was and is my chief complaint is my very now deformed right ring finger and I am getting a further run around on that with no answers since this began in 2023. No doc or specialist seems to know what it is! I have even been sent to an Infectious Disease doc who seemed much more concerned and interested in my case, helping me, and thought a biopsy would be needed to run special tests for uncommon organisms. She sent me to a fifth hand surgeon who blew me off yesterday and said it was psoriatic arthritis. I saw a rheumatologist right after my platelets were found to be high who said she did not know what I had and sent me for ultrasound guided needle biopsy of my finger joint that was not approved by the insurance. The rheumatologist never diagnosed me with psoriatic arthritis! I actually would not want that fifth doc as my hand surgeon as I am not sure of his skill level for my situation. He said I should go back to the rheumatologist for treatment of psoriatic arthritis which I do not even have! I am just being “ping ponged “ back and forth between specialists at this point. I liked the fourth hand surgeon who sent me to Infectious Disease but he is just a local older hand surgeon not dealing with the infectious disease component of my case. So, although I am complaining, I count my blessing as I have no pain and full range of motion as well as have not been cut up by one of them just doing something and causing me a worse outcome like not being able to write at all. So my visits to supposed specialists were pretty useless including a MPN specialist as she did not even read my chart and thought I had JAK2 mutation which I do not. Perhaps she is an expert in JAK2, but I have CALR mutation and she seemed to not be up on latest information on what I have. She also thought my finger had gout and it does not! In the meantime after a year and a half of being told I have blood cancer I still feel exactly the same as I always have with no symptoms and like you consider myself a very healthy person at age 66 and will keep it that way myself, God willing.
I am so sorry to hear that you did not feel well enough to keep your special puppy. I do hope you can get Daisy back at some point. I know our house cat here is very helpful and calmly for me. We got her from a rescue.
Anyway, thank you for listening and know you are not alone in your frustration with the medical system in current times.

I am 58F and HU damn near killed me. Anagrelide was no better. I finally got referred to an MPN specialist who said he would have started me on an interferon from the beginning. I have been on Pegasys now for a month and it is so much better! Switching to Besremi in a few months when insurance will pay for it. I would highly recommend you see a specialist, fact is I would demand it. It makes all the difference in the world! Good luck! Oh I’m high risk after an arterial clot in my calf a few years ago and I have symptoms.

@mdramsey48
I have been studying up on interferon - many promising things I've read. If you don't mind me asking, what were your levels when you started taking it? I am about the same age as you - 56 - with ET, JAK2 and CHEK2 mutations.
Thank you -

@mdramsey48
I have been studying up on interferon - many promising things I've read. If you don't mind me asking, what were your levels when you started taking it? I am about the same age as you - 56 - with ET, JAK2 and CHEK2 mutations.
Thank you -

@jville42 My platelets were generally between 680 and 771. They went down on HU and anagrelide but shot up quickly once I stopped taking them. I am considered high risk due to symptoms and an arterial clot after a hysterectomy in 2023. My platelets have been high for years but no one ever mentioned it until last year when I went to my PCP for a variety of symptoms. I was dx with breast cancer right after my ET dx so I had to go thru active treatment for that before I could start treating for my ET. I asked to see an MPN specialist but my onc asked me to give him a shot since he was already treating my BC. I agreed and then went thru hell for 3 mos. He said I was complex and referred me to a specialist. I cannot understand why MPN patients aren’t immediately sent to a specialist. And why aren’t interferons the first line of treatment since they can stop disease progression and potentially reverse it? Good luck to you! Do you have symptoms? I can’t remember if you said you did or not. You may have symptoms you didn’t recognize as related. I know I did!

I am 58F and HU damn near killed me. Anagrelide was no better. I finally got referred to an MPN specialist who said he would have started me on an interferon from the beginning. I have been on Pegasys now for a month and it is so much better! Switching to Besremi in a few months when insurance will pay for it. I would highly recommend you see a specialist, fact is I would demand it. It makes all the difference in the world! Good luck! Oh I’m high risk after an arterial clot in my calf a few years ago and I have symptoms.