New MDS

[Umaterr]

New MDS Dx, 8/19/14


Hi, my husband was just dx with high risk MDS. He has 3% blasts, low counts on all 3, red, white and platelets and he has 17q-, which is not good. He was told that there are transplants available but the chances for a good outcome, for him, were 30%. Yikes, not sure what to do now, I am reading every ii can about MDS and would love some suggestions on which way to go with this now. Also he was told that he had about a year and one half to live. Any information you can provide would be greatly appreciated. Thank you so much. My husband is 59.

[Caregive]

So sorry for the instant worry of the diagnosis of MDS. Constantly reading will help you get up to speed on some of the facts. And posting here will bring much support and info. How old is your husband? And does he have other ailments in the mix? Does he start any medication or transfusions soon? Are you near a big city with medical staff with experience with MDS? Good luck to you both.

[Cheryl C]

From what I've heard and was told by my specialist, 30% transplant success rate is fairly normal (ie 3 years after transplant) in the older age group. It's a big decision to make and I agree that you need to learn as much as you can before you decide what to do. Here is a website which may help, depending on your husband's age:

http://www.sciencedaily.com/releases...0624173242.htm

[SLB]

I agree with Cheryl... I was told 40% are "cured" (then 50% of those have chronic GVHD), 40% relapse and 20% don't make it. However in saying that secondary MDS is harder to treat again. Remember that a lot of the time when stats say you will have x amount of time to live, this is usually an estimate without having any treatment. Scroll through the forums, there are people that have lived many years on various drug regimes. My initial diagnosis told me about 8 months to live and I am still here 2&1/2 years later... Not huge I know but today is my daughter's 7th birthday and every year I see my babies get a year older is a huge blessing!!

Good luck & do all your research... However in the end I stopped looking at statistics and odds (it always seemed, I had the worst odds) because in the end 30% chance of living was always better than 100% death!

[Cheryl C]

Great to see a post from you Sharnie. I remember when you were going for transplant.

When my specialist said 30% that was without ongoing GVHD so yes we are pretty much in agreement Sharnie. I don't stress about statistics either - was originally told 18 mths to 2 years and it's now almost 3 years since diagnosis and I am feeling better than I did then, and am stable except for white cells, for which my average drops about 0.5 every year so far. MDS is a certainly a highly individualised disease.

[Umaterr]

Thank you, Cheryl C, Caregiver and SLB for getting back to me. I appreciate the responses. I am researching every thing about MDS and have been taking lots of notes. My understanding from our visit to DF was that because of the Multiple Myeloma dx and other medical issues (heart condition), that transplant would not be recommended...the specialist never came out and said that but that was our take away. My husband is 59. I am looking for anything that might give him a little more time if he decides not to transplant. Do any of you know someone who has chromosome 17p deletion with duplication of 17q? If yes, what treatment did they go with? BTW, I am really new at this type of forum as well, so I might not be doing all of this correctly, I am sure with a little more time I will get it...thanks again for the info appreciate all I can get..

[Cheryl C]

Umatr - You're doing the right thing by learning as much as you can. Knowledge is power and gives you the ability to ask intelligent questions when visiting your specialist.

I have monthly pathology done - your husband may have it more often. I find it really useful to keep an Excel spreadsheet with charts of the lower/higher than normal results so I can see at a glance how I'm going. I keep a running average so I can compare this year with previous years. Would that be helpful?