forgot to add that he had been on the epo shots for almost 2 yrs prior to diagnosis. they stopped working in June 09.

Hey there... I'm sorry to hear about your Dad.

I still don't know a lot about how this disease progresses. I know that it's hard to wait and see... but that is the story for a lot of people unfortunately. You are not there on your own. Every person is different too. I'm sorry I can't help you more. I understand your anguish. Hang in there... and keep asking questions.

- bionicJ

thank you for your response. It is very difficult to sit back and wait and watch. Dad is 80 and so ready to go. Guess that makes it harder on me. I am happy I found this website!

Hi, I know how hard it is to sit back and watch, it's my husband who has MDS, he is 75, we have been dealing with this for two years now, his counts just seem to go up and down....when down they start talking chemo, then they go up so they postpone the chemo, just this week he was all ready to start, and the counts went up....we know it's only a matter of time, but we take every day as it comes....can not plan on the future because we don't know what the future is....Janet

Dad told his dr on Monday that he will not take the chemo. his numbers are pretty low. as I said above he has had about 18 units of blood since the end of december. Yes it is very hard to sit back and watch but not much else we can do. I wish you and your husband all the best. My prayers are with you both.

Hi, group! I've been reading everyone's comments for quite some time & argued with myself as to whether I should add my 2 cents. However since everyone's case is a little different - - - my husband is 70 and was diagnosed with MDS in Jan. 08. He has other health issues - heart & immune system - so this is just another layer. At the onset, he was on Aranesp injections. That didn't last long. Blood transfusions started in the fall of 2008 and for most of the past year, he has received 2 pints of blood almost every week. Which creates the next problem - iron overload. He has been taking a drug called Exjade for close to a year that is supposed to reduce the iron & is now up to 5 tablets of this a day. Not working to this point. He's lucky to keep his red count at 9, platelets are in the 40's, white count not a problem. Iron count is now at 2165 - normal should be around 300-500. This is a major concern to his doctor, because it can cause severe problems to major organs however there seems to be no way to treat this. MDS is not as common as one would think and everyone's case is different. Major key - stay positive. Attitude is everything and more so for the caregiver. Take each day for what it is and be thankful for that.

Hi, I am just getting started with the chemo injections. For my situation, I welcome anything that works for me. After 2 years of prednisone, now blood/platelet transfusions and chemo; it is just great to have some energy to watch my boys play hockey. for now that is all I have to offer. Like everyone else has stated, everyone is different. Continue to pray that he will do what is best for him.

I don't know... How is he now? My Dad has the same thing. Praying my heart out. My brother told me today that the transfusions add iron - that which he is not supposed to have... I will pray for your Dad too.

I can't tell how old your post is. Is there any new news?

I will pray for him. And for you.

Caron

Does anyone know a general prognosis for MDS RARS with blood transfusions? Thanks :)

My Dad passed away May 3 this year. He fought a good fight. He had blood and platelet transfusions for over a year. Platelet transfusion since October last year.

poshshorty....My condolences to you and your family. It is hard to deal with death of parents. He was fortunate to have a daughter at his side.

thank you hon. I was very blessed to have him as my dad. as a matter of fact he died standing up in my arms. for that I am thankful

My husband passed away on May 4, 2011 after a year & half battle. My advice to everyone who has questions is to talk to their doctors and do as much research as you can. Take nothing including supplements and OTC drugs unless Dr gives the OK. Demand that all the treatment options and their risks and benefits are fully explained and understood. Contact MDS associations such as those listed on these pages. There are more and more break throughs every day. What works for one person may not be optimal for others. Good luck and prayers to all patients and their families.

Thank you Moses for your kind words and advice. I am so sorry for you loss. I know that all those first holidays are the hardest. you are in my prayers!
Have a Blessed Christmas!

My husband was recently diagnosed with high risk. From what I've learned from personal experience (two friends with MDS/AML passed in the last few years) and by educating myself, there is often a pretty fast transition from high risk to AML. While MDS can be treated and the progress of the disease sometimes contained, there's not much that can be done with AML, esp. for older patients. The wives of our friends have both urged me to NOT WAIT.
We are proceeding with Vidaza treatments. I would encourage you to pursue the options, as we are told both Vidaza and Dacogen are well-tolerated, and therefore can improve quality of life.
If you need more info, there is a lot of good (and probably misleading, too, but you've got to start somewhere) info online if you 'google.' I know Dr. Tibes at Mayo in Scottsdale AZ and have heard of Dr. Alan List at Moffitt Cancer Center in Tampa, FL; both specialize in treatment and research.
Whatever you choose, I sincerely wish you, your dad, your family well.