People living with ET and taking Hydrea: Anybody setting records?

My platelets started at 2900 (crazy, I know). I take 1500mg of Hydrea 5 days a week and 1000 twice a week. It was 1500mg daily but my wbc dropped too low (still are low). Platelets are down to 1000 WITH meds. I’m only 53 and yes I do worry about the lifelong relationship with Hydrea. My problem is I also have aVWD (acquired Von Willebrand Disease)… the opposite of many of your fears of clotting. I don’t have the ability to clot. Super counter intuitive. So my fears are if there’s an injury/accident… I will bleed out not to mention the bruising and random bleeding you all have too 🙁
ET (CALR) and aVWD. Good luck to all

Well, you sound like a very WISE man, who is young at heart. I thank you so much for sharing your experience with Hydra these past five years. Yes, we are all so different and will react differently to the drug but how nice it is to be able to have this forum in which we can hear from others with ET. I did not know that Anagrelide was not a chemo drug and will look into it further. Meanwhile, I wish you the best in your transition to the drug and hope this will be the panacea you are looking for to bring you back to your former self with much less fatigue. Would love it if you would keep me/us posted on how you are feeling.

Hello, Pumpkin. I'm 85, ET, CALR + and have been taking Hydrea for a little over five years, but just started the switch to Anagrelide. This morning as a matter of fact. The reason for my switch is a small ankle ulcer that has been slow to heal, but is now a week or two away from being cured. At this late date of 37 weeks of wound treatment--there was discussion about calling victory and declare the excellent treatment I received at two separate wound doctor facilities a success--there is little likelihood that Hydra is now much of a factor. It is likely, however, that it did play a major role in the ulcer materializing in the first place. Turns out there is a slight chance that an ulcer will develop in Hydra user very near the five-year mark for those who are taking a gram a day. Mine arrived right on schedule. Had I known about it, I would have requested a smaller dose and shouldered the risk because there doesn't seem to be much evidence to support the '450 platelets or bust' approach of many Hematologists. As to numbers, I've yet to find any trial that establishes a linear relationship between platelet count and circulatory accidents. However, common sense would, of course, suggest that if platelets are the cause of such events, then the more platelets we have, the greater the likelihood of a bad outcome. Over my five-year dance with Hydra, I became a wall flower (COVID didn't help). At any event, the fatigue induced by the Hydra was such that it became harder and harder to get motivated, and I slowly but surely stopped doing things I had done much of my life. The drug I'm switching to, Anagrelide, is, as you likely know, NOT a chemo drug, and I expect to become more active once the transition from Hydra is complete. I pass this along as my experience only, and, if I've read it once I've read it a thousand times, WE ARE ALL DIFFERENT, and react differently to the drugs. So take this with a shaker full of salt and I wish you well.

Hi everyone, I am newly diagnosed (Fall 2021) and have the JAK2 V617F mutation. In my mid 60's and currently on low dose aspirin and 500 mg Hydrea daily, although at this time my platelets sometimes get a little too low and we have to halt the HU temporarily. The platelets go right back up and I begin the HU...so I'm at the beginning of my ET journey. My hematologist did tell me that she has one other patient with the same diagnosis that has been on HU for over 25 years quite without any major side effects, which calmed any anxiety I had about side effects. So far I only have tingling feet which I believe is one possible symptom of the disorder? My feet have been tingly for many years and no-one could ever tell me why. I just found this group recently. Thanks for all of the positive posts!

Hi all,
I have been taking HU since about 2012. 500mg per day and a baby asprin with it. I'm now 70 years young, some days...lol I think, from what I have gathered, if you don't take the HU, you open yourself up to the real possibility of strokes. That scares me a lot more than taking the HU! It was only very recently I heard ET described as a rare blood cancer! No doctor ever called it that. I also bruise terribly. All I have to do is scrape against something and I get a huge purple/red bruise! I hate that...it is so ugly. I tried anagrelide at first too but had tremendous headaches with it. They switched me to HU and thankfully I have had no major side effects. My counts are starting to jump higher so now I take an extra HU on Monday and Thursday.
We all just do what we have to and try to be as health as possible. Good luck all...

Hello pumpkin -I’m also 81 and have been on Hydrae for two years. It took a few months to get the correct dosage, 1 x 500mg too little but 2 x 500mg just too much. I’m now on 2,2,1, regime.
My skin became very dry, red and blotchy plus after a year I started to lose my hair. My haematologist is adamant if I don’t take preventive medication I will suffer either a stroke or heart attack sooner than later.
My hair loss seems to have stabilised, so am reluctant to start an alternative medication. I am not prepared to take the idk, especially an immobilising stroke. AnnO from Australia.

Though I was diagnosed with ET, and JAK2 this summer, I still hesitate to take Hydrea because of my age (nearly 81) and CBC numbers are still in 600s. Does anyone know what statistics are of life expectancy of those who do not take a chemo drug? Have any studies been done re. this? What exactly is low risk and high risk? Any input you have will be appreciated.

I found MPN Voice on healthunlocked.com. I was diagnosed with ET JAK2 in June 2022 so I am just starting the journey,
Eileen G. In Pennslyvania

It is also wonderful to hear from you! I have begun to wonder what life will be like for me in the next decade, thus I decided to ask people on this site what experiences they've had. Because I was diagnosed in my late 30s, I now think about the possibility of increasing symptoms from the disease. I have been very blessed to not have significant issues with the disease or HU thus far. But I have had severe migraines since I was in my 20s. And just after I turned 54, I suffered a nearly fatal, sudden brain aneurysm hemorrhage and subsequent stroke. I have asked physicians since that time if it was related to ET, but they claim not. So, most of my ongoing issues are actually from the aneurysm/stroke and not from ET or HU (at least I don't think so!) I am encouraged that you are 75 and doing so well, despite your other issues. Carry on! Life is a gift not to be taken for granted, as we daily learn!

Hi lefsequeen, I am new to this group also. Hope I'm doing this correctly.....
I was very encouraged to read your post as I also have ET and have searched for others to connect with.
I sent a lengthy message yesterday explaining my situation but haven't seen it on the board yet.
I was diagnosed in 2013 at age 68 and had a bone marrow biopsy in 2017. The bone marrow biopsy confirmed a JAK2 V617F gene mutation with easy bruising . I take 500mg HU along with 81mg asprin daily. This keeps my platelet count in check. Over the past year I have struggled with many increased physical symptoms which have slowed me down considerably and I am searching for answers as to the correlation of symptoms to the ET and the HU.
I do all I can to eat well , take my vitamins and live a natural healthy life style . My symptoms include worsening neuropathy with varying levels of tingling, tightening, and numbness in my feet, legs, hands , face and head. These come and go... I bruise easily and have Raynaud's syndrome with intolerance to cold in my hands. I also have spinal stenosis in my lumbar and cervical spine , In August of last year I had three horrific headaches during a two week period, with neck pain so severe I could not more my head . The MRI of my brain showed evidence of blood from a previous possible thrombosis . I saw a neurologist along with my oncologist and neither seemed concerned about the findings. What caused the headaches and neck pain is a mystery and I haven't had them since, although I do experience periodic pressure in my head and eyes. Most people would not know I struggle with any of these issues and I stay as active and upbeat as possible. In general life is very good and I am thankful and blessed. My primary care physician tells my husband and me that of all of his patients my husband and I are two of the healthiest! We are 82 and 75 respectively....haha.