Newly diagnosed with MDS as of 3/30/2011

[ramey2148]

Hi Pat and good luck with everything. I had an unrelated donor stem cell transplant. If you want too read a thread, a couple of pages back, I actually let people know how I was feeling a certain times during my transplant and before. It will be under Jersey Guy and it goes for about 5 pages. If you have any questions feel free to ask. I aam not the best at answering the medical questions but I can let you know if how you are feeling is normal. If you ask the medical questions you will get an answer because there are some smart cookies on this site. Hope everyone has a GREAT DAY.
Bob

[ratram]

Hello, this website really good.

[Russell]

Hi Andy, I am a 51 yr old diagnosed with MDS in 2009. I had been tired and not right for several months before collapsing and ending up in hospital. To cut a long story short I had the first of 3 bone marrow transplants in April 2010. The first 2, anonymous donors, did not work, the third was a Haploidentical Transplant with my 15 yr old son as donor – he was a 50% match. The long and the short of this is that I am now recovering well, not in any way fit(!) but almost normal again and feel great. Hopefully you will feel the same. My specialist was Professor Mufti at Kings College Hospital, London. The man is a genius.

If I were to give any advice it would be to be patient, don’t overdo things, let your friends know and develop your support. DON’T EVER EVER give up that you will get over this. Stay positive at all times.

This is not a good illness, but there have been massive improvements in treatment and outcomes and you are young enough to cope well. I wish you the best.

[Mary4Mike]

Andy,
My husband had a non-myeloablative stem cell transplant 9/30/09. His donor was his sister and she has a son. I have never heard about a female not being accepted for donor because of having had children. If she was pregnant, that would be different. My husband had 4 days of chemo and then was given the stem cells. He went home 12 days later. He is doing GREAT! It was easier than any chemo he did prior for the MDS. He did Vidaza, Dacogen, and Revlimid. None of them are cures and none of them work for very long. It sounds like you are young and would most likely be a good candidate for transplant. I would ask about transplant. It is your best chance of living a normal life where you can forget that you ever heard about MDS.

Also, go on the Marrow Forums. There is a lot of interaction with transplant survivors.

All the best,
Mary

[ccpat]

Mary,

I’m so glad to hear that your husband is doing so well!!! Is life back to "normal"? Sure hope so…though, I’m sure it’s not the same "normal" as before!

Did your husband not have radiation? My husband is scheduled for May 27, irradiation for a week and Atg for a week before the non-myeloblative transplant. Yikes!

Continued good wishes!
Pat

[Mary4Mike]

Hi Pat,
My husband did not have radiation. He did Fludarabine and Busulfan as his prechemo treatment. It was done over 4 days.

You ask if life is back to normal. YES! Actually it is better than it has been for 10 years. He has more energy than I can ever remember. His HGB was 18.1 at his last check up. He is doing phlebotomy once a month to rid himself of the extra iron from the many, many blood transfusions he had. He takes very few meds now and has had very little GVHD. He was in a clinical trial for GVHD. He took Vorinostat for 100 days. We have no way of knowing if this had anything to do with his good outcome. We believe that the Lord heals and the doctors collect the fees. We also believe that the Lord has blessed the doctors with their knowledge.

How good of a match does your husband have? I will pray for him and you. This will be a journey, but be thankful you only have to go through it one day at a time.

If you have questions, feel free to ask.

Mary

[Andy R]

I am being pretty patient right now. My sisters in the UK got their typing kits and are sending them back to Dana Farber. Hopefully we will hear something soon. The way it was described to me, I am an intermediate level 2 risk which is supposedly pretty serious. This means we are going straight to attempting to find a match and not bothering to do Vidaxa or other meds unless the time to find a match takes awhile.

[ccpat]

Hi Mary,

Oh, what good news about your husband!!! Soon as he gets an "average" Hgb., he’ll be "perfect"!!

It’s good to hear good news!!! Everyone listed here is so different, and there are a lot of good outcomes, I think.

My husband, has a brother and sister, both perfect matches, so they are using the brother. Yes, I believe we’re about to discover what a "real journey" is. Ron is "low risk", but just had a pre-BMT BMB to see if there have been any changes in the last 3 months. Since all 3 "lines" are down, they decided that now is THE best time. It’s more than a bit scary, but the alternative is not acceptable.

Andy, best of luck to you! Hopefully, your sisters will both be perfect matches. Guess we should all hold hands and jump in together!

Pat

[bobweinberg]

Mary for Mike:
Can you describe the extent of the match that your husband found? Sibling? Unrelated? antigens matching?

[Mary4Mike]

Hello Bob,

Mike’s match was his older sister. We were told she was a perfect match. She matched 10 out of 10. That is the extent of what I understand about it. His sister’s blood type is Type O negative. Mike was A positive, but is now O negative. I found that interesting, but I realize that matching isn’t about blood type. He had low dose chemo prior to transplant and no radiation. This was because of the match being related and perfect. Health wise other than the MDS, he was/is healthy.

Are you considering transplant? I see that you have MDS RARS, the same that Mike had. Vidaza worked for him for 15 months. The effect was almost immediate, but it stopped working just as fast. Revlimid did nothing to help, but he had no side effects. Dacogen was worse than the transplant chemo. He ended up in the hospital 3 times. We really should have stopped then, but we kept hoping that the next round would be the one to kick the bone marrow into working. Also, there was nothing else out there to try except transplant.

He decided to go for the transplant because he was sick of feeling so tired, so weighted down, short of breath, not being able to enjoy life. Of course it was his decision and I am so glad that he did (so is he!). I don’t want to give the impression that it wasn’t a scary decision.

If you have any other questions, feel free to ask.

Mary

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