Dad has MDS and going on Vidaza soon

[sbk007]

There's a member on here still posting that had an 8/10 match with the same odds, they figured 20-30 % was better than 0%. That poster is still posting.. Keep in mind none of these SCT's have high odds
One day I most probably will have to make the same decision, and after reading the many success stories on here I have to say my confidence level is much higher than it was and the decision will be a lot easier.
Yes, people have had SCT when MDL transformed to AML and are here to talk about it. The Vidaza question is one for the transplant team but after a while it stops working. However, the fact that he had this treatment could be beneficial and increase his odds for the SCT.
The best you can do for your parents is to be supportive and ask the questions they might not think to ask. I'm sure you'll get some better answers from the more savvy members but hope this helps in the meantime.

[SLB]

Hi.. yes I had an 8/10 transplant on the 6th of march this year so today I am day + 89. I haven't had a bone marrow biopsy yet (scheduled for 2 weeks time) but so far my blood counts show good things. My platelets & white cells have been in normal range since about day +30 however my red cells are still trying to convert blood types so I am getting tranfusions about every 2 weeks. I have had a little gvhd but quickly under control with steroids (which they are still tapering off).

I had MDS and did 8 rounds of vidaza and probably for first 4-5 rounds my blood counts improved but it didn't last & I transformed to AML. So went through 2 rounds of induction chem prior to transplant. My doctors spoke of it being a risk thing.. when at first they could only find an 8/10 match, they said the risk of undergoing transplant was higher than staying on vidaza (however if they had found a 10/10 they would of gone straight to transplant) they were hoping vidaza would give them more time for a perfect match to come along. Once I transformed to AML the risk balance changed & transplant was really my only choice. In hindsight, I probably should of gone to transplant straight up because by the time I had my transplant, 2 rounds of chemo , infections and many many transfusions later had left me in a less than ideal state to face that challenge!

It is a hard decision because you just can't tell how long vidaza will work for and when it stops working it can happen fast. And of course the healthier you are leading into transplant certainly helps! The statistics I was told were 40% are cured (some with gvhd issues), 40% relapse & 20% don't make it through transplant.. they later told me 20-30% don't make it but that could be because I was less than healthy going in. I did say to the doctors at least I was younger but they said that really wasn't a factor. The whole thing was definitely tough but I am thankful I have made it this far. I have stayed out of hospital since day +22 just going twice a week for appointments (touch wood ).

Not sure if any of that helps but good luck.. it certainly a tough decision. I just heard last night that one fellow Australian forum member didn't make it and my heart goes out to his family. Sharnie.

[Birgitta-A]

Congratulations Sharnie!!!
Kind regards
Birgitta-A

[sbk007]

Originally Posted by sbk007

started 5/13/13 ended 5/19/13. No problems or side effects from the treatments that I can feel.
Had blood pulled today 5/23/13, 4 days after cycle 1.
WBC is now 3.9 it was 5, plates 110,000 it was 130k, and HGB 7.7 it was 8.1. Doc was happy(tolerated well & no WBC booster or transfusion needed and will pull blood next week 5/30/13.

Was supposed to start cycle 2 on 6/10/2013.
Doc pulled blood today 6/6 - WBC fell to 2.5, plates 108k,and HGB 7.5

Doc wants to wait a week for the WBC to come up but is encouraged by the stability of the RBC and Platelets before starting and now.. If WBC don't come up then I start cycle 2 6/17/2013 and get a neuprogen shot after to boost WBC. I was disappointed but he says its common..He could just give me the neuprogen and go as scheduled but says a week wont make a difference this is how he wants to play it. Frustrating..

[sbk007]

Doc pulled my bloods today. After looking at the counts he asked the technician to pull my blood again, didn't trust the results as my HGB was 7.5, plates 108, WBC 2.5 last week 6/6.
HGB is now 10.1, platelets 230k,and WBC back up to 3.2. Doc was very happy. Said its rare to get a response after the first round but it happens.
Not sure about the neulesta booster as the WBC''s seem to be coming up to pre-vidaza levels of 5 on their own. Set to begin round 2 6/17. Waiting the extra week turned out to be a good call.

[Birgitta-A]

Hi sbk007,
Wonderful with such a positive response!
Kind regards
Birgitta-A

[sbk007]

Thanks Birgitta for all the info you provide us and the well wishes.