Forum Replies Created
-
AuthorPosts
-
Devon Grosskopf
ParticipantWere you chemo before the transplant?
My bone marrow specialist said I have to be in remission with chemo before the transplant. I was diagnosed with AML with MDS. They start 1st to treat the AML but it didn’t work went from 20% to 40% did 1 round of decitabine for 5 day and blast went to 2%. 3 weeks off 10 day of decitabine and I’m in remission but they found a match for me to get a bone marrow transplant.
I would go see a specialist. I’m sure this website could help find some better resources and opinions. Most of the ppl with MDS are in their 60-70s. I’m 32 and I have read many success stories.
ParticipantI have MDS but the chemo I was on was decitabine for 10 days and 3 weeks off only had to rounds and my biopsy came back clear….horrible body aches but nothing else.
How often does he get Revlimid?
ParticipantI had body aches horribly for 2 and half weeks right now it not that bad. As long as he doesn’t have a fever he’ll be fine. My oncologist recommended taking claritin it helps somewhat with the aches. And since his platelets are low he can’t take motrin. Tylenol doesn’t do anything. Is his oncologist recommending a bone marrow transplant? Or are they just going to continue chemo? What was the results of his bone marrow biopsy? With just 1 round of the 10 day my blasts went from 40% to 2%.
ParticipantDiagnosed with AML with MDS at 32. I constantly hear your so young to have this disease.
ParticipantOh and counts drop within 3 to 5 days after. My WBC has never been above a 3….platelets and red blood usually recovers quickly
ParticipantMy chemo rounds for decitabine/dacogen for 10 days then 3 weeks off. I have AML with MDS. During chemo I didn’t have any side effects they came a week later and lasted 2 weeks. Joint, body aches, shortness of breath and weakness. It’s common with that medication. It’s not fun feels like the flu so I constantly think I’m sick.
ParticipantI also am so sorry for your loss! I have AML with MDS, it’s definitely a disease that changes you physically, mentally, and emotionally. Thoughts are with you and your family!
ParticipantHello Ashley,
Im 33 and I was diagnosed with AML with MDS related changes in December 2016. When they get my blood work to check for leukemia it came back negative but the bone marrow biopsy it showed cancer. My platlates levels were the only thing that was low but previous to being admitted to the hospital I was getting infection after infection. So you did have a bone marrow biopsy? My biopsy came back after a week. When did you have yours? I hope you get some answers soon.
-
AuthorPosts
