MDS

[Charlie]

My Husband was initially diagnoised with AML but after a second bone marrow biopsy he was found to have MDS in the intermediate stages, They are telling us that without a stem cell transplant that he may have 2 to 3 yrs of life left: He will be going through 4 cycles of Vidaza within the month to see how he responds to that before the transplant is scheduled. He had 5 brothers tested but unfortunately none were a match. We will now go through the National Registry, the bad thing about that is that the rejection factor is higher with an unrelated donor.I wonder if the Vidaza could maybe deter the transplant? It was good news that the disease had not progressed to AML but he is basically being treated the same way.I had bought a supplemental cancer policy but was denied due to the fact that their definiton of cancer included malignant cells or tumors and MDS does not fall in that catagory Any feed back would be greatly appreciated Thanks Donna

[bluegirlPA]

Hi Donna. My husband was also initially diagnosed with AML (June 2006, shortly before turning 32). After a 2nd bone marrow biopsy his diagnosis was also changed to MDS. They called his "high risk" or "high grade." Similar to you, the treatment either way involved transplant. My husband only has one brother who was not a match, so we had to search the registry. In the meantime, my husband was started on Vidaza. Fortunately for him, he started to respond at the end of the 1st cycle, just as the second cylcle was to begin. Because he was responding so well we kept hoping that the doctors would tell us, "turns out a transplant isn't necessary afterall!" Unfortunately that never happened. The doctors said that Vidaza would not work forever. And even though Joe was effectively in remission, going off of Vidaza (or hanging on until Vidaza stopped working its magic) there was a huge chance for relapse. A relapse would make the whole treatment process even more difficult.

We were blessed to find a donor within 6 months (21 year old female). Joe had his transplant this past January. Today he is 103 days out (who's counting, right?) I'm happy to say that he is doing really well. Recovery hasn't been easy, but Joe is more than aware that things could have been far worse for him. This week he is looking and feeling better than ever, and most people would probably have no idea he has been through so much.

Hope that helps. I'll be praying for you and your husband.

Karen

[Charlie]

KAREN,
We really appreicate the feed back. This whole thing is new to us so it helps to hear from someone that has been through what we are fixing to go through. Charlie was taking Nupregin shots but last Friday when he went for his CBC his counts were low and the office was out of Nupregin so he ordered Leukine 500 mg for 5 days! Today is Monday and he has two more days of the LEukine then I suppose they will check the blood evels again. He is due to get his dental work done on May 8th and 10th then after that they will start the Vidaza. I pray that he responds as well has your husband did! It is great news that your husband is doing well after his transplant! I will be praying for you as well Thanks Greatly for the response

[bluegirlPA]

Donna,

I will also pray that your husband responds as well as my husband did with Vidaza. We felt so blessed that he had such a great response. I'm happy to help in any way I can, even if it's just a little bit. Take care.

Karen

[Charlie]

initially the doctor was talking about needing stem cell transplant, husband had 5 brothers and none were a match Now that he is having to resort to the National Registry She seems to think that he is a high risk for stem cell transplant and as long as the Leukine shots which he takes approximately every two weeks is keeping the blood levels up .This is what she wants to continue as long as it works. She talked about Vidaza but she advised that this was a more aggressive form of treatment and why make him sick if he is responding to the Leukine. My concern is how long will the Leukine continue to give good results I guess we can only pray that it continues to work Thanks Donna