F/w PV- JAK2-pre-mylelofibrosis SCARED to start Hydroxyurea. Help!

Hi, I have been on Hydrea since 1992. I'm 78 years old. I have essential thrombocythemia, negative for JAC, recently DX as ET/CALR. I'm contacting you to answer your questions about taking Hydrea.
I began taking by taking 5 - 500mg capsules because when I was diagnosed my platelet count was almost 2million. Normal is 150 to 350. I doubt you will be taking that much.
My counts have gone up and down in the last 32 years. The last time I took hydrea, I took 3 capsules or 1500 mg a day.
I raised a family of 2 boys during the last 3 decades. Don't worry about hydrea hurting them. You can hug and kiss anyone without hurting them. Just make sure you are the only person who handles the capsules. If you must go into the hospital for any reason, you will be given a private room at no charge to you because you are on chemo. I have had several surgeries that didn't have anything to do with my blood dx.
I have never been nauseated or vomited. I did gain about 30 pounds when I began taking the drug. I had very little hair loss. I can eat anything I want, I have always been unable to eat anything dairy all my life. Nothing to do with hydrea. I do get tired more easily but I belonged to a hiking club for years. Had to stop hiking because of a bad knee not hydrea.
Ask me anything. I took hydrea for 32 years. I am now on a trial drug.
Hope this has help a little bit. I was told when I began hydrea, it is the best of the worst. Just be glad there is something to take to help with your dx. When I began taking hydrea, I was told it was the first drug to help people with my dx. I've always been so grateful that it has given me time with my family.

Hello, Sophie! A scary diagnosis with no explanation or support -- I'm so sorry this happened to you.

Hydrea (HU) can have side effects, but thousands of us take it with no problems at all. For generations, it has helped people with MPNs and sickle-cell anemia.

Still, I'll be honest: I was terrified to swallow my first HU capsule!

Now I know it's my saving grace. HU has brought down my platelet count and given me my energy back. Every dose protects me from blood clots and strokes.

I'll share what I learned when I first came to this forum: Don't take HU on an empty stomach. Drink LOTS of water. Find an activity you love (walking, swimming, playing with your kids) to keep your blood circulating.

And remember we're here for you!

Been on HU x 6 years. Also ET-CALR x 17 years. I'm 70 now. Highest my platelets went was 800. Now in 400s and stable. No unmanageable side effects.

The biggest problem with this disease is lack of info from the docs. They don't explain anything about hydroxyurea or chronic (vs acute) cancer.

The reality of having a chronic cancer in America is having to deal with overworked docs who only have 10 minutes to spare per visit.

Given the info in yr post, I would tell the doctor that you are scared of taking the hydroxyurea and ask these questions:

1. Why am I on the BMT list? (Most of us will not need BMT.)

2. Am I a good candidate for interferon-based injections (besremi or ruxolitinib) vs hydroxyurea? Patients under 60 often do better on these meds. They are not chemo.

3. What are the risks of just taking daily low-dose aspirin and continuing with blood monitoring for the next year or two?

4. How will you help me with any side effects of hydroxyurea--nausea, diarrhea/constipation, hair loss, and fatigue?

5. Will I need an ultrasound for spleen enlargement (thus is a common side effect with MPNs, and meds can help this).

Keep us posted on how it's going.

Thank you for sharing with me. This has been helpful to know that you are doing well on this drug and to not worry about loving my family thru this. I wish you the best.

I have bern on and off hydroxy for CMML which turned into AML I didn’t have any side effects. Now they want me to start chemo infusions. I go 5 days a week and then 3dsys the next week and Also take an oral pill. Twice this has Bern brought up but my counts are good again. Then they postpone it. It is a roller coaster ride. I have yo say my oncologist is thorough. She sends my bone marrow biopsy to two of the top hospitals and meets with the board. I am not the regular patient the way I react to AML but I do have blasts so the treatment is inevitable. Good luck on the hydroxy. I felt better on it and more energy.

Hi Sophie, I started on Hydroxyurea 4 months ago. I was scared to take it because it IS a chemotherapy. It did, however, bring my platelets down, rather rapidly so I am grateful for it. I'm also on a low dose aspirin every other day. I was at 1200 and now at 370 (millions I think--don't know the number factor exactly, but 150-400 is the normal range I was told. So I'm normal today! I am continuing to take 500mg of HU every night before bed but I hope it will be decreased since I am in the normal range. I was told to eat a Mediterranean diet (can't do that, but I try). I was told to exercise 20 minutes a day every day (can't do that when I'm just too tired, but I try). I am 73, female, JAK2 positive with TET2 and ASXL1 mutations; pre-myelofibrosis and pre-leukemia. I had the bone marrow biopsy to learn of the mutations, as you mention you did, also. If anyone reading this and is recommended a bone marrow biopsy, opt for a little sedation...I didn't. Dr. said to expect a big and lasting pinch--that was an understatement! Don't be afraid to take Hydroxyurea, and I hope it also helps you. I'm sorry you're on the BMT list. I hope you don't need it! I'm 20 years older than you, so it's an unlikely option for me. I have had some side effects with Hydroxyurea but nothing I can't handle. The most depressing is slight thinning of my hair, SLIGHT not balding. I get occasional headaches when I don't drink enough water and occasional leg cramps in bed. I think this is due to dehydration, too. Never had nausea and I take the pill on a full stomach usually. I don't like the idea of taking a chemo drug, but a stroke would be much worse and my high platelet symptoms are gone. No more painful and lasting jabs in my toes and feet, no more brain fogginess and confusion, less worry regarding my health because I'm getting answers! The answers aren't what I wanted to hear, but in contrast, my sister is fighting bowel and secondary liver cancer and my daughter is a recent recovering breast cancer survivor; I can do this! Wishing you the very best! You can do it, too!