View Single Post
  #16  
Old Thu Mar 26, 2009, 10:20 PM
launch launch is offline
Member
 
Join Date: Mar 2009
Posts: 193
Question Update - We have to choose Treatment option...???

Went back to Emory 3/25/09 (Yesterday). Ron's IPPS was inter-2 although we were hoping for a low or inter-1. The chromosomal aberations were more extensive than what we had first believed. Ron has 5-6 different chromosomal aberations, making his MDS more of a challenge to treat. We've been offered the following options:

#1 - Vidaiza and/or Dacogen as one treatment
#2 - Remlvid & Arsenic (Very Toxic ... he doctor discourages this option).
#3 - Clinical Trail (E1905 - PHase II Trial of Azacitidine with or without the Histone Deacetylase Inhibitor MS-275). In this trial, you receive a lower than normal dose of Azacitidine, but, receive it for 10 days vs the usual 7 days. Also, in addition, one control group will also receive the MS-275 and the other group, a placebo.

Right now we're leaving toward the clinical trial, but, it's all so confusing because we just want to get something started now.... to put Ron on the path of recovery/remission. If we want the clinical trial, starting next wednesday, we need to decide tomorrow... or wait another week.

Ron is very tired and his HGB was down on 3/25/09 (yesterday) again. He's getting another BMB tomorrow at Emory, more blood work, and the 4th Procrit shot that hasn't had any affect on his condition. We were told they give you at least 4 shots before determining you're not responding to it.

I personally believe Ron will get another transfusion tomorrow afternoon or Saturday... He looks pale and is very weak. At least we go back tomorrow.

The main stressor right now is making the right treatment choice....

I will pray that when we get up tomorrow we'll be at peace with our decision and be reassured by God's Grace that whatever we've decide is the correct choice...

I appreciate all of you out there! I told Ron, it would be helpful for him to participate in this Forum as well.... hopefully I'll get him here soon... right now, he doesn't like to talk that much about the actual "CONDITION".... we both are still in a bit of shell shock still....

so much has happened in the past 6-7 weeks and our lifestyle has been greatly impacted. He's been hit really hard because his passion & Love is for us to travel... this condition has really slowed us way down... for now...

Please keep us in your prayers... that we find peace in our decision... tomorrow.... Sincerely, Cindy:
Reply With Quote