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Anyone else find the side effects of Hydrea 500MG frightening?
Blood Cancers & Disorders | Last Active: Oct 20 6:16pm | Replies (139)Comment receiving replies
I have skin only Langerhans cell histiocytosis (LCH), a rare blood disease, chronic myelomonocytic leukemia (CMML) (an MDS/MPN crossover), and immune thrombocytopenia (ITP). These three rare blood diseases may be related, but it is not known because of a lack of research in rare diseases.
Diagnosed with the painful skin lesions off LCH in 2016, I tried many topical treatments and brachytherapy (radiation) without relief.
After a CBC in 2019 showed a platelets count dangerously low at 2, a bone marrow biopsy showed a diagnosis of CMML. My team of hematologists, and a cutaneous oncologist, decided to try hydroxyurea, often used for LCH and forCMML. It has been a miracle for me. I have had occasional headaches that are gone by 10 or 11am and a weight gain of 8-9 lbs. This is a small price to pay for the relief to the painful skin lesions and stability of my blood counts!
This is a very old medication, from the 1960s, that is commonly used very long term for Sickle cell disease in young people and usually with minimal side effects. If it is beneficial for our chronic blood diseases, we can be grateful. I understand that a few people have side effects that may be serious, but it is generally well tolerated and certainly proven!
Replies to "I have skin only Langerhans cell histiocytosis (LCH), a rare blood disease, chronic myelomonocytic leukemia (CMML)..."
Hi there: can I ask how old you are and what dosage you are taking. I have been diagnosed with CMML and I am 76 and my doctor put me on hydroxy 2(500)mg after my white cell count was 50. After the first week my count came down to 24. Second week it came down to 14. My oncologist couldn’t believe my blood tests and how good everything was. It has been 3 weeks now and I go for blood work tomorrow. I went on vacation. I have never felt better since being on this drug. I hope they lower the dosage.
I have more energy now than before. I did read the life span of someone with CMML is 20-30 months. How long have you had CMML.
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This is so encouraging for me. I have been diagnosed with CMML however they are going to treat me as if I have AML. I have started hydroxy 1000mg in the morning but will have to go up to 2000. I have been on it for a week now. I am going to
Ask if I can take the extra dose at night. My hematologist is also talking about a chemo injection 5 days a week. It was a board of doctors in a big hospital who met and have decided in this treatment. I am 76 yrs old. I originally diagnosed 8 yrs ago with low risk MDS. I read on google that the life span for someone with CMML is 20-30 months. Scary.
I meet with my oncologist Tuesday to discuss it all. I did accelerated chemo 17 yrs ago and radiation for breast cancer.
Apparently this blood cancer has nothing to do with the breast cancer.