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![]() My uncle in 63 years old and was diagnosed with MDS in February.
![]() Is there any "new" treatment out there???? I can't find any information with regard to the progress of this disease.....I would appreciate any help that anyone could give me. ![]() Any information would be greatly appreciated!!! Rhonda
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Rhonda niece of Ron age 63;diagnosed MDS;Treated with Revlimid (no response) current treatment with Vidaza....Waiting ![]() |
#2
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Rhonda,
I am sorry I don't have much info for you. Just wanted you to know I read your post. I do know that MDS doesn't always turn into AML. Also, many people live for years being transfusion dependent. I read on another forum that the former director(?) of the AA/MDS Foundation lived 18 years transfusion dependent. I don't recall the man's name, or if he was the director, but he had some significant position with the Foundation. You will want to watch his iron levels for iron build up from the transfusions. Sorry I don't have more info for you. Zoe
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Diagnosed MDS-RA 5q- at age 47 (November 2006). Aranesp 2/07, good response. |
#3
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Hi Rhonda? You might suggest the drug dacogen to the dr? Also inquire about clinical trials too...please keep us posted and best wishes
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#4
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Quote:
Diagnosed with MDS at age 57, Bob Carroll lived an active and fulfilling life, to age 72, receiving regular blood transfusions (hundreds of them) for those 15 years. He helped countless others afflicted with bone marrow failure diseases, worked tirelessly toward a cure, inspired others, and led by example. He's still missed by those of us who knew him. A well-deserved Tribute to Robert Carroll was read into the Congressional Record in 2006. ![]() |
#5
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Hi Rhonda - I went through 4 cycles with vidaza, and it didn't help me either. In fact, my counts dropped dangerously low, that's when the doctor and I decided it wasn't for me. Revlimid at 10mg didn't work for me either, and after a short hospital stay because of fever and low counts, I went back on it at 5mg. It is about the same time I started taking shark liver oil. I have been transfusion free for 15 weeks now. I do not know if it is the chemo, the shark liver oil, or all that praying, but something is sure working for me. The shark liver oil is relatively cheap and you can find it online. My doctor was fine with my taking it. I would suggest asking the doctor about the slo and then ask for some divine guidance. It can't hurt to ask. Good luck and I hope your uncle finds something that will work for him.
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Tom, age 56, diagnosed with MDS RAEB Oct of 2006. Previously treated w/ vidaza, unsuccessfully. Revlimid successful 1 year. Progressed to AML 4/08 w/ 20% blasts, now in remission. BMT to take place 10/08. |
#6
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Neil,
Yes, thank you for sharing the specifics. I am off to read your links. Zoe
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Diagnosed MDS-RA 5q- at age 47 (November 2006). Aranesp 2/07, good response. |
#7
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Sad News in Ohio
On September 5th my Uncle passed away due to a 4 wheeler accident. My heartfelt appreciation to those who offered advise, prayers and information on his MDS. My thoughts and prayers are with you all!!
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Rhonda niece of Ron age 63;diagnosed MDS;Treated with Revlimid (no response) current treatment with Vidaza....Waiting ![]() |
#8
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Rhonda,
I am so sorry to hear about your uncle. It sounds as if he was enjoying life to the fullest in spite of his disease. My condolences. Zoe
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Diagnosed MDS-RA 5q- at age 47 (November 2006). Aranesp 2/07, good response. |
#9
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Oh Rhonda I am so sorry for your loss...Deb
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#10
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Dear Rhonda,
I'm very sorry to read that you've lost your Uncle so suddenly and in such an unexpected way. He was lucky to have your support in his battle with MDS. With sympathy, Ruth
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Diagnosed AA 10/96, MDS/RA 6/98, MUD/BMT 10/6/98 |
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