Hydroxycarbamide

[Mungestar]

I’ve been taking Hydroxycarbamide at 500x2 5 days snd 500 x1 2 days for a year. My count was 1200 and it went down quickly and I was reduced to less but then creeped up quickly so it’s now fairly balanced. I’ve had very little problems on it. Fatigue and some inflammatory bone aching but really doing much better pre tablets. I’m a very healthy person for the most part. I eat a completely organic diet as I have access to a farm and I do yoga and walk to keep sane as well as knit. I have myelofibrosis and three different mutations with a chronic portal vein thrombosis. I’m a cervical cancer survivor as well. For the most part I’m doing much better before I started treatment. We will explore other options eventually. I’m 56 and also take 20 mg of rivaroxaban, a blood thinner everyday. I would say you’re at a good place at 340 and can go to 150 but I just stopped going down. You’re lucky you don’t have to take much in the scope of it. Hope that helps.

[hunter5582]

Glad to hear you are doing well. It is far better to thrive than to just survive. There is significant progress being made in treatment options for MPNs and our treatment options are expanding. All the best to you.

[jillydabrat in reply to hunter5582]

Lol Hunter, I thought Megan Markle was answering then.

[Angelinagaffer in reply to jillydabrat]

🤭😁🤣

[Cja1956]

That’s good to hear. I have post Et Mf, and am also doing well, but my platelet counts have been very stubborn and hover around 700- 800. My red blood counts and hemoglobin are always low. I’ve been stable for about a year and a half. I take 1000 mg of HU every day, as well as Fedratinib and baby aspirin. I just wish my platelets would go down, but I don’t want to take any more meds. I think they also contribute to my fatigue. I hope you continue to feel well.

[Mungestar in reply to Cja1956]

I’m surprised the platelets are not lower from HU. It did take 6 months and figuring out what the he’ll myelofibrosis is for me. At first pre biopsy we thought it was ET. The portal vein thrombosis really made me sick and when I was first diagnosed my platelets were At 1200 and now over the last 6 months in the mid 350. Went up when I reduced the HU to 3x500 and 4x 1000 so I went to 5x 1000 and 2 x 500. The only absolute cure is stem cell transplant but I’m not that sick yet and if I’m fortunate the bone marrow disease may not progress quickly or translocation. It’s really difficult because people can’t entirely tell you’re sick but some days are really painful. We have to hope that the medicine and knowledge will improve and as you aptly point out it is. I’m grateful.

[Cja1956]

When I got diagnosed with MF two years ago it was already at intermediate one. But my doctor also doesn’t think I’m ready for a stem cell transplant. The medicines caused me to have more side effects, so I didn’t want to increase them. We found some other issues this year which I’m working on like sleep apnea, so I was on a CPAP machine for a while and that seemed to improve my fatigue. I also got a herniated disc in my back a couple months ago, and I did physical therapy for a while and that made me a lot stronger. I’m 65 now and I have been struggling with blood cancer since 2008, and the window is closing for people my age to get an SCT. So I told her I want to schedule another bone marrow biopsy to see if my bone marrow changed. It’s a lot to think about. They are so many variables in this disease.Best wishes,

Cindy

[Mungestar in reply to Cja1956]

So true Cindy but you’re working really hard to manage the MF and so far it sounds like you’re doing really well given a few other serious setbacks. I wish you the very best. Blessings. Thanks for sharing🌸