Hi everyone~
Sorry for the delay in responding....it's been crazy! With less than 24 hours notice, I went on a whirlwind trip up to New Brunswick NJ to Cancer Institute of NJ--part of Robert Wood Johnson Hosp....entire staff was awesome!
My Dr down here set me up on a STAT visit with the next level institution (
Greg) where they actually do have access to clinical trials...the new Dr squeezed me in as his only patient yesterday!!!!!! Friday of 4th of July weekend! Amazing!
He mentioned that phrase "smouldering" as my counts are low (not raging high WBC) and still almost borderling MDS/AML at 27% blasts....he felt that I might qualify for 2 clinical trials.....don't know that now that I have crossed that line that Estybon would be an option.....I will ask, though....
#1-Long story short, and before reading the fine print, they are doing a clinical trial at CNIJ which would involve a short hospital stay for the first dose; once a week as outpatient for 3 weeks, then 2 weeks off....5 week today cycle for 3 cycles.......steriods and aspirin to combat side effects....24 hrs pre and post treatment.....
This is in the 2nd phase of this trial which has shown promise in China.......I will investigate and give more info later.......
Option #2 was an oral medication that is sponsored by a drug company....I think everyone feels that option #1 is better--hey, it's their study! But I believe that it may be the most realistic for results...... the Dr I was assigned and also my local Dr's mentor are directly involved in this.
I am at my healthiest since my first induction and feel physically up to another type of treatment, as my options are severly limited at this point........and it's better to be treated while before I get really sick. I feel that this a doable treatment I can live with while ever so stubbornly trying to maintain a decent quality of life. (hello, it IS summer after all!
...
This new doctor agreed that since my first course of treatment was so devastating, that more induction chemo or transplant would be risky....I feel like he is treating me as an individual, which I appreciate.....nothing about me has followed a typical path thus far and truthfully, if I can be a help to future generations by participating in a trial to help stamp out these horrid blood diseases, I feel that in itself is a worthy contribution.
I also sing the praises of Marrowforums to health professionals (often getting a raised eyebrow) but once I tell them how professionally run it is and what an awesome source of support and info it is--- I hope they will check it out...I cannot tell you all how glad I am to have been a part of this so that when I got this latest round of "difficult" news, I feel that I have advocates fighting for me that I do not have in my real life! Loved ones care, but they are clueless as to how to find information that you all are so great at getting!
I pray for us all and will continue to keep you posted the more I learn.
Have a great 4th weekend and enjoy every moment!