I know it's been a while and I'm sorry I haven't posted here more frequently. I've been keeping up Ron's caringbridge website if anyone wants to check in, I've put Ron's site at the end of this post.
By the time Ron was to sign up for the clinical trial ABT-348, it did not have openings that week, so, he was again offered and accepted the study drug TG02-10 (Citrate). This study is still at Phase 1, meaning, of course, while proven in laboratories to be effective, they now have to determine what is the maximum dose a human can safely take and if they can achieve response to the drug. Ron was started with 70mg 5 days, then, 2 days off, then, another 5 days on and then 2 wks off.
Ron's fevers and sweats were getting better, but, the blood counts are not improving. Ron is transfusion dependent on RBCs weekly and PLTs twice per week. He's also on Amicar 3 x per day, and the Doctor allowed the PLTS to get down to 4 and 5 (4,000 and 5,000), but, over the past month, Ron has had nose bleeding. He has purple spots all over his arms too. And, he remains very very tired. He has had 2 falls in the past 2 months, the last one being, just in the carpeted bedroom, he was standing beside the bed and just went down while using the urinal bedside. He skinned his arm really bad, lifting off the top layers of skin. It left a mess, but the Amicar did work at keeping the bleeding minimal. It clotted up very quickly.
What Now? We were stunned when we went in yesterday, expecting to begin cycle 3 of the study drug, but, the doctor told us the drug is not showing any response for people with Ron's conditon (MDS) and I suppose at his chromosomal classification. He was told, continuing it would be non-productive and that he did not show others getting responses with the other clinical drugs (Phase I). So, an option for Ron is not available. He wanted to know what Ron wanted to do? He said they could continue transfusions as he needed them, or we could get them locally to make it more convienent for us. (We were Floored). This is not the news we expected to here.
So, basically, we were being told, they can do nothing else for Ron's condition. We still have Faith in the Lord and I know, it's not over until God withholds the last breath. Ron's been fighting MDS, transitioned into AML, then, came out of remission, and back to MDS. I rebuke my prior post of MDS being Ron's thorn in his side. I believe Ron's been healed and I cling to that belief. My Faith has grown so much of the past year, especially, I don't say that I believe his healed just to make myself feel better, but, I say it because I truly believe it in my heart. I pray that God Manifests it real soon.
We asked the doctor to allow Ron to stay on the trial another cycle. I personally have seen symptomatic responses, like the fevers and the sweats decrease immensely! I pray that we're able to "Stun the Doctors!"
Meanwhile, I'm searching for a Phase II or III trial that Ron may qualify for at another facility. I am not against taking him for another opinion, even out of state.
Any recommendations?
Thanks,
Cindy
www.caringbridge.org/visit/rallison