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June 1, 2022 at 3:25 pm in reply to: New to MDS, any answers/stories greatly appreciated #58225
The 5yr estimate is just a guess. It is slow moving mds so there is no certainty as to how it might progress. I have had same for 3 years with some transfusions and infusions. I am batter than ever. New biologics are changing our chances. So know that she will need to rest frequently when hgb drops and will need help around the house. Walk sleep and eat good.
There is no end date. Lots of good meds your dr can try. Revlimid really good for me. Get a good doc.
Have had great results with revlimid. No transfusions over 2 yrs. Hgb 11.9 last week.
I think that must be coming from something else. Get it evaluated.
I have had good results with revlimad/retuximab.
Judging by your activity level your HGB is not low. What exactly is the indicator for a transplant. I would go slow as long as symptoms are minimal.
This is a good question to which I have had no success in getting an answer. I think it might not effect the HBG count but help with symptoms. If you can bike and run with hgb at 11.9, that is good. I do weights and walk, but don’t run any longer.
NO I have not, but will be thinking of you and praying all goes well. Best wishes, Kevin
I think you should get a hematologist who has some expertise with MDS. The fact that his doctor does not check his blood levels at each visit indicates that he may not be a specialist.
I don’t think there is any easy answer to this. Just rest when you are tired, sleep as much as you can, restrict activities, eat a good diet. You can’t do what you use to be able to do, but when you feel up to it, take a walk, get fresh air. You have to put other things aside for now, your focus has to be on yourself.
Yes I am. Revlimad did not help me. I developed AIHA. Then retuximab brought my levels back up above 11. No transfusions in over a year.
I have had very good results with retuximab with no side effects. Ask your doctor about it.
I have had great success with infusions of rituximab. Previously had several infusions. Procrit did not help. RBC btw 11-13 since getting the infusions. No more transfusions. My activity level is back to normal. No side effects. 8.2 RBC is not a good way to live. Ask your doctor.
Before jumping ship, I would make sure doctor knows what you need. Get copies of all tests, Put your questions in written form so you won’t forget. Then insist that you speak with the dr. at your next appt. If they won’t answer your questions then look elsewhere.