Worried in Ohio

[Rhonda]

My uncle in 63 years old and was diagnosed with MDS in February. Since then he has been tried on Revlimid (didn't work) and Vidaza (didn't work). Since February he has been transfusion dependant (2-3 units bi weekly...His red blood cells are extremely low) The Dr. says that now we just wait.....I am assuming that she means for the MDS to grow to AML. I have done some research on the net with no luck!!! Meanwhile, my uncle is a worrier, and I try to keep the negative things away from him and try to keep an upbeat attitude. Yesterday when he was getting his transfusion, a nurse asked him if he was scared........I know that she meant well.

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. The Vidaza has lowered his white count to 2.9 and his red count to 7.1 his platelets are low but rising. I think I have read just about everything that there is on this disease. His Dr. keeps saying that he is considered RA, < 5% blasts, no chrom. deformaties, no excess iron. Other than feaver and conjestive heart failure, I don't know what else to watch for.

Any information would be greatly appreciated!!!

Rhonda

[Zoe's Life]

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

[Debster01]

Hi Rhonda? You might suggest the drug dacogen to the dr? Also inquire about clinical trials too...please keep us posted and best wishes Deb

[Neil Cuadra]

Originally Posted by Zoe's Life

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 were reading about Robert Carroll, former President and then Chairman of the Board of the AA&MDSIF.

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.

[Tom M]

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.

[Zoe's Life]

Neil,

Yes, thank you for sharing the specifics. I am off to read your links.

Zoe

[Rhonda]

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!!

[Zoe's Life]

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

[Debster01]

Oh Rhonda I am so sorry for your loss...Deb

[Ruth Cuadra]

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