Getting closer
I am fully approved with my authorization numbers for the consult with Dr. Byrd at Ohio State to see if I qualify for the trial. Hard to imagine that if my insurance OK'd the consult to see if I was appropriate for the trial they would give me grief about enrolling in it if Dr. Byrd so recommends.
I am feeling pretty confident that Blue Shield, OSU, my docs here and I are all pulling our oars in the same direction now and it will all work out.
The reams of medical records as PDFs, photocopies, and on disc are slowly coming together.
Hotel is booked. Rental car will be done tomorrow.
My bone marrow biopsy FISH showed my 11q del in an estimated 11.5% of my cells. Surprisingly, this is the first time over the many years at UCSD at Kipps's lab or at City of Hope with all my blood tests, bone marrow biopsies and even the removal of the huge mass of CLL cells with my splenectomy that the FISH has confirmed my original finding of 11q deletion at time of diagnosis. That is a matter for a much longer post, but it will have to wait until a time I am more awake.
With the patient help of my son Ben, I have made good progress on getting the ASH videos online and they should be available by next week. I am very pleased with the project to educate primary care providers about CLL and transplants.
Watch here soon for more on a link to an audio file on handling the stress of CLL with hypnosis. Another project I am very proud of and one that I hope will not only certainly help those who listen to it, but will also raise a bit of money for CLL research. More later. I promise.
It's all getting closer.
Labels: Clinical Trial NCT01217749, hypnosis, OSU, PCI32765, stress
posted by Brian Koffman at
1:17 AM
4 Comments:
FISH tests are somewhat odd in that many labs report yes-no rather than an actual percentage. At least for del 17p in multiple myeloma, the French claim that a low percentage does not imply a poor prognosis but rather one controllable. I have not seen similar claims for CLL so lets hope the same might be true. After all, in your case there were only a few bright ones above cutoff so you have to wonder about statistics etc.
Regards, TomD
I found your blog today. I've just read a few posts, but I want to thank you for sharing and wish you the best of luck in Columbus. Dr. Byrd is wonderful--both he and a doctor in NYC, where we live, are on my husband's team. It sounds like you are on a great path! My husband was diagnosed with CLL 10 years ago. We got married 6 years ago, had our first baby 4.5 years ago, went through fcr 2 years ago, had our second baby 6 months ago, and now the CLL seems to be coming back. Knew it was coming, but oh, how I hate this. Through it all, we have a wonderful life. I teared up when I saw the post title and photo with your granddaughter--reason to live, indeed.
Ellen
Just found your blog. Thanks for writing. My husband was dx in April 2011 with 11q deletion, and all sorts of other bad prognostics. Its nice to find a Dr. that believes in vegetables! We have been on watercress since dx.
Kayansas (Kay in Kansas)
If you don't mind what was the percentage 11q from your initial test that showed it?
I had 6-7% 11q on initial FISH then after FCR BMB FISH showed no 11q.
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