New to Hydrea for ET

Hi! I’ve been on Hydrea for 19 years. No hair loss or any problems other than feeling a bit tired. Although I’m 69 years old now, could be age related, ha, ha! Best of luck to you on your journey!

@1pearl hi I was interested in your post as I too was diagnosed with ET with the CALR mutation , I had a bone marrow biopsy before Christmas and have been told I have grade 1 scarring on my bone marrow so I’m interested to know why your diagnosis was changed to primary myelofibrosis ? Was it as a result of a biopsy and if so did they say what grade you have as I’m not sure what my diagnosis is going forward, I had been taking 500mg of Hydrea up till Christmas but i was having a lot of side effects so stopped taking it and now I’m taking it Monday Wednesday and Friday to see if I can tolerate it better I’m also on 75mg aspirin which incidentally my cardiologist (who I attended for atrial fibrillation ) which thankfully was ok but he has suggested I go on another blood thinner which also addresses any minute clots in smaller arteries which aspirin doesn’t address as it only thins the blood so I’m interested to hear how you’re managing your symptoms and also about why you got the diagnosis of primary myelofibrosis

There is a research study which implicated Jak2 mutation to endometrial cancer, If you're interest in study, check it out on Google Scholar.....I think it was from China

@ebertolis Hi Thx for your post.. I was diagnosed with Jac2 a couple of years ago... I am very anti-medicine however I know sometimes we have to take it.. I will be 70 years old in June I have never been sick really a day in my life.. all the sudden I have high platelets and my blood pressure was high.. I did lose 35 lb I took the Hydra for 2 months and I got off of it I did not like how I felt and it was so against my whole being.. so now I take beetroot I take one baby aspirin in the morning last time I had my platelets read they were 730.. I do feel that stress makes them worse.. I went to California for a fast and I went on juice for 26 days my platelets went down to 612.. I am going to take my chances I'm going to do what you said and go on garlic and I did start exercising by jumping on my little trampoline everyday for a half an hour.. and I am a musician and I got back into playing and I have my first gig on March 7th I'm very excited it takes my mind off of everything so I'm keeping my fingers crossed and praying because I just don't want to take that medicine thank you for your encouragement.. and I wish you and everyone else dealing with this all the best whatever path you decide to take.

Hi @roughanne ,
My bone marrow biopsy was graded 1.5 so my former O/H changed my diagnosis from ET to PMF. Honestly, I have no symptoms still one year later and had a CT scan which showed my spleen is normal size. I have no cardiovascular risk and no clots ever. I do have have high platelets so I take low dose aspirin daily but not when I had a recent Moh’s for another skin cancer. I have never taken Hydrea and do not plan to ever take it as I have already had at least five skin cancers (which have been removed) over the past four years. I wear sunscreen daily, polarized sunglasses outdoors, a large brimmed hat, and cover up outdoors anyway but still have gotten the skin cancers! I am blonde with some gray now and blue eyed so I guess more more to skin cancer and did spend time outdoors riding hoses and swimming when I was young. What kind of symptoms are you having?

Tip to those taking dietary supplements for ET: Let your doc know what you are taking and at what dose. Some may interact with aspirin and thin your blood too much.

Also be alert to spleen enlargement. Without cytoreductives like hydroxyurea or interferon injections like besremi, enlarged spleen can be uncomfortable and interfere with appetite.

It's also very good practice for all ET patients to reduce overall stroke risks with a heart-healthy diet. We adopted this after my husband's heart attack. My cholesterol was not a problem to begin with, but without taking any drugs, it dropped to where it was in my 20s and 30s (I'm 71 now).

Just a few things I learned in 17 years with ET, coming up on 8 yrs with hydroxyurea.

Hi, @guitarjane74

I would like to know if it is not too inquisitive what side effects did you experience during these two months because I began just today to take Hydrea but with much anxiety. I did this because my platelets are at 1113 and red blood cells at 6,56 and leukocytes at 13,16, and in almost continuous growing since the January 8th when it was discovered. I have no intention to take it for years and perhaps I'll stop in a few months. The beetroot is it a food supplement or in form of vegetables?

I too was very concerned about starting Hydrea- but it hasn't been too bad- some hair thinning at first. taking L-Lyzine can really help with any mouth sores that you may have. I say slather on the sun screen and keep moving on.

( L-Lyzine is an essential amino acid crucial for human health, serving as a building block for protein, collagen synthesis, and calcium absorption)

@ebertolis I've been on Hydroxyurea four years, it's brought my blood components into the normal range. Side effects no big deal, nowhere near real chemotherapy.

@ebertolis I've been on HU since my diagnosis in October, 2023. Zero side effects so far, and my platelets dropped from 792 to hovering around 220. I started with 2 500 mg capsules daily and now take them only 4 days a week. It's a little scary at first but not as scary as what can happen if we have ET and are untreated.