Hesitant on starting Hydrea for ET Jak 2

Posted by bgerges @bgerges, Aug 3 11:51am

I am a 73 year old female, diagnosed with ET, with Jak 2 mutation. The highest my platelet count has been was in the mid 600's and was just tested again today at High 500's. As of now I am on 2 baby asprins a day, but my Oncologist has been recommended me starting Hydrea since I was diagnosed 2 years ago. I am hesitant about starting Hydrea because I have no ET symptoms, worried about the side effects of Hydrea and the fact that my platelet count has not been climbing. My WBC and RBC are on the high side of normal and I am also concerned they will be negatively effected. What did other oncologists order when their patient's platelets were in the high 500's? Interested in hearing comments.

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1995victoria | @1995victoria | 5 days ago

I would be more worried about getting a stroke or heart attack from clotted elevated platelets. but it's your choice.

scienceteacher | @scienceteacher | 5 days ago

In reply to @jodyjazz "@scienceteacher I agree with you. I have been taking HU for a couple of years. Am..." + (show)

@jodyjazz
I love my evening wine spritzer!

ladyplumber7 | @ladyplumber7 | 3 days ago

In reply to @1pearl "Hi @ladyplumber7 , I feel for you. The doctors who are supposed to be experts and..." + (show)

@1pearl

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.

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@1pearl aa
My Ms Daisy will problem never come back the rescue refuses, i gave her up when a doctor didn't tell me of the side effects and the grout unbarable pain to walk was from the drug not the cancer,and they told me to go to my gp, they didnt' treat it, they are so wrong, i only gave her away under that duress, i would never part with her. i just found out that the doctor i suppose to see and most the time is her Np or assistant is being sued by two patients right now for some similar problem i've had at the cancer clinic private owned but big money. i have never been ill.. i want my life back. i know all of you do too, but what you can handle and each of us it's different.

mdramsey48 | @mdramsey48 | 2 days ago

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.

jville42 | @jville42 | 1 day ago

I was diagnosed with ET in 2023 - I am now 56 - also have the JAK2 and CHEK2 gene mutations.
My platelets have gone up now to 597 - just found out my B12 levels are super high, and LDH is climbing - been super tired, etc - I am active, eat healthy, plenty of protien, etc. I do not plan to do HU...so many unknowns...just joined this today so hoping to enter some good and informative discussions.
I wish only the best for you in your decision making -
Thank you - JT

jville42 | @jville42 | 1 day ago

In reply to @mdramsey48 "I am 58F and HU damn near killed me. Anagrelide was no better. I finally got..." + (show)

@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 | @mdramsey48 | 1 day ago

In reply to @jville42 "@mdramsey48 I have been studying up on interferon - many promising things I've read. If you..." + (show)

@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!

mdramsey48 | @mdramsey48 | 1 day ago

In reply to @jville42 "@mdramsey48 I have been studying up on interferon - many promising things I've read. If you..." + (show)

@jville42 Oh! I am also very active and healthy. I can tell you that puts us way ahead of the game!❤️

jville42 | @jville42 | 1 day ago

In reply to @mdramsey48 "@jville42 My platelets were generally between 680 and 771. They went down on HU and anagrelide..." + (show)

@mdramsey48
Yes on interferon - I have been listening to many podcasts promoting it over HU - I was diagnosed in late 23/early 24 - my docs didn't raise any red flags until I moved back to Montana - was in Indianapolis for years and my docs didn't say a word - my numbers started changing after my covid shot - so I honestly believe that is a big part of it - I am adopted with no health history. It took almost 6 months and many tests before they referred me to a hemotologist - but I now have the most amazing oncologist here in MT - recently my platelets have gone up, along with my B12 and LDH levels - been tired etc more than normal. Waiting for a message back from my doc. I do have the JAK2 mutation along with the CHEK2 - which puts me at higher risk for breast and colo-rectal cancers - just turned 56 and they say after 60 I am high risk - but if my numbers aren't horrible and I am still active and healthy, i will refuse the HU treatment.

ckmrust | @ckmrust | 1 day ago

In reply to @mdramsey48 "I am 58F and HU damn near killed me. Anagrelide was no better. I finally got..." + (show)

@mdramsey48
hi there, can you clarify how the HU was impacting you? I just started on it and trying to understand longer term side effects and whether I should be requesting interferon instead. 67F with PV.

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