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Old Thu Jan 29, 2015, 12:45 PM
Peachy Peachy is offline
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Join Date: Apr 2013
Location: Colorado Springs, CO
Posts: 59
Revlimid RAEB 2 18% Blasts UPDATE

My husband is very encouraged.

We are so glad we went for a second opinion, because had he started with Revlimid alone as suggested, he would have not been even considered for clinical trial (below). We are also thankful to our Doc for getting us the appointment for the second opinion so quickly.

Yesterday we met with the University of Colorado, had an additional BMB, and he is being considered for 2 trials.

One is for the gene mutation of IDH - which he is being checked for (thus the additional BMB), which has the best remission rate, so far.

Second - Azacidine (Vidaza) and letolinimide (Revlimid) with the hope to get blasts down to "remission" level. If accepted, he will have vidaza shots for a week followed by 21 days of Revlimid (50mg), which is a really high dose. While this combination is not easy to tolerate early signs show it could have up to a 50% response.

We will know in a week to 10 days after results of new BMB.

(Thanks DanL and Ballie for making us sound good - the doc was surprised we even knew the names of the drugs! I forgot to ask about the other trial, but will do so next week when we get the BMB results). The fact that the combo worked for you Ballie is also very encouraging.

If accepted, we will then meet with another BMT doc to see if he now qualifies for a BMT. He was disqualified last year because of squamous cell cancer in lymph nodes. Those lymph nodes have now been removed. While we have not met with Doc yet, it is encouraging. The goal is remission then right into BMT.

I thank you all in advance for listening and your support.

On another note - I mentioned we were so thankful that we traveled. I need to clarify that by saying we traveled extensively Pre-MDS to Alaska, Europe and many other places. Our travels since our MDS diagnosis have been minimal, in between shots, transfusions, chemo and when not living in our neutropenic "bubble" at home. MDS and AML and the treatments required always come first for us.
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Husband 69 dx MDS/RARS 4/2012,Arenasp 2013; dx RAEB-1 5% Blasts - transfusions, Vidaza - BMB 12/2013 35% blasts - dx AML M6b (Pure Erythroleukemia) - Induction/Consolidate complete Aug 2014 - BMB 5%; Not accepted for BMT ; New BMB 18% Blasts with dropping whites and platelets avg HGB 9
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