Marrowforums

Marrowforums (http://forums.marrowforums.org/index.php)
-   Clinical Trials (http://forums.marrowforums.org/forumdisplay.php?f=15)
-   -   Starting Sapacitabine tomorrow (http://forums.marrowforums.org/showthread.php?t=2332)

Al's Wife Tue Aug 23, 2011 07:47 PM

Starting Sapacitabine tomorrow
 
Well, we are starting Sapacitabine at Emory tomorrow. Since this is a Phase II, things go quite a bit differently than the Phase I Arry-614, my husband was in earlier this year. The doctor said that he would have the up and down cycle (my terminology) like he did when he was on Vidaza, where his numbers would go down and he would be very tired, but then, hopefully, go back up again.
Today his platelets were at 29, which I rejoiced in, since they were at 22 last week. I never thought I'd be happy to see 29, but with this disease, we'll take whatever we can get! The RBC's are at 10.6 and the WBC's are still in normal range.
We are just so thankful that we are able to do this here near home and did not have to do the trial in Houston.
Eventually, if this doesn't work, then we may not have any choice; but for right now, this is where we want to be.
I'm not sure why MDAA did not tell us that this trial was being offered here at Emory near where we live. But they have been very nice in forwarding the reports so that my husband did not have to repeat the bone marrow and other tests.
So I'm praying hard and hoping that this clinical trial will help my husband. He turned 74 today and to look at him, you wouldn't know anything was wrong. He's very active and loves to work in his shop on his old cars, so it's going to be hard when he's tired and feeling bad to watch him (at least that is how it was when he was on the Vidaza for 6 months) not being able to do the things he loves.
I just admire all of you with this disease and pray for a cure soon.
Thanks to all for your kind words and support.
Linda

Sally C Tue Aug 23, 2011 09:21 PM

Hey Linda and Al,
We understand rejoicing at 29,000 - and Al's RBC is good and his whites are wonderful!!
God is looking out for you both - finding a trial close to home. Keep the faith!!
We'll be thinking of you. Please keep us posted.
God Bless,
Sally - wife of Don - MDS

Birgitta-A Wed Aug 24, 2011 06:10 AM

Sapacitabine
 
Hi Linda,
Hope Al will have a good response!
Kind regards
Birgitta-A

cheri Wed Aug 24, 2011 09:07 AM

Hey Linda

Hope all goes well and Al feels good throughout the trial! So happy to hear it's close by...what a difference it makes being near home....
Wishing you a good response and great numbers!
Cheri

Snuuze Wed Aug 24, 2011 11:33 AM

I'm grateful to Al and other participants in clinical trials. He's willing to put up with discomfort in hopes that it will work for him and others. Hopefully the treatment will cause minimal side effects!

Sue

DanL Wed Aug 24, 2011 01:54 PM

best of luck to al and to you. as somebody whose platelets hang out in the 20 to 30 range, it is very easy to understand the joy of a 29.

wewillsurvive Tue Sep 6, 2011 11:05 PM

Hello
 
Hi Linda and Al,

I have followed your posts from the other replies you have posted and wanted to stop by and pass on best of the best to Al.

How is he progressing, please keep us posted, our prayers and wishes are with you and your family.

Blessings


All times are GMT -4. The time now is 07:03 PM.

Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright © 2006-2020 Marrowforums.org