Just wanted to let everyone know that after doing tons of research and getting opinions from 3 different hospitals, I have finally settled on a plan of action to get rid of this stupid lymphoma once and for all! I am committed now to a clinical trial at the National Cancer Institute (NCI) in Bethesda, Maryland and am set to start treatment December 1. I am excited and ready to kick some ass!
The trial will involve 2 rounds (as long as it's working when they test after the first round) of a pretty intense chemo regimen called DA-EPOCH-FR that is given over 5 days as an out-patient, which means I get to wear a super stylish chemo-filled fanny pack around town...Woo hoo! I have to go to Maryland for each round but get to come back home for 2 weeks in between so I will still get to see all of your beautiful faces at my Kickin Cancer Benefit at Crandalls on Dec 12.
As long as things go according to plan, after the chemo rounds I will proceed to a "mini" allogenic transplant of one of my sibling's hopefully super amazing stem cells! In an amazing twist of good luck, which I usually don't have in matters of health, 5 out of 6 of my siblings were perfect 10/10 HLA matches to me even though the odds of a sibling match are only 1 in 4 (so Keegan, you better never need a transplant because we can't help you!). Whichever one the doctors deem the best fit for me will get the honor of saving my life, which is a pretty cool opportunity I must say!
The transplant is called a "mini" one because while they will give me some chemo right beforehand, they won't totally destroy my bone marrow-they'll just give me enough to knock out my immune system enough for my brother or sister's to take over. Then after 14 days, they will infuse my sibling's T-cells into me after they do some magic to them in the lab to make them extra-amazing. I will most likely be in the hospital for around 2-3 weeks and then have to come into the clinic almost every day for a while so they can check my bloodcounts and make sure everything goes well as I heal and adjust to my brand-new immune system. All in all, I'll have to stay in Maryland until I am +100 days post-transplant and then hopefully I'll get to move back to Illinois healthy and cancer-free!
Even though this is a clinical trial, I feel 100% secure in my decision. NCI is home to some of the most well respected and renowned experts in lymphoma in the whole country. This particular trial has been in effect since 2004 and I have personally talked with 2 people whose lives were saved by participating it and I am confident that it can do the same for me. Plus, being involved in a trial offers me the opportunity to help others and advance cancer research through what the experts will learn from my experience :)
If anyone would like a really exciting read (just kidding!) or wants to sift through the medical jargon and learn more about the trial you can look it up on the National Cancer Institute, clinical trial # NCI-04-C-0055, NCT00074490-Allogenic HSCT Without Preparitive Chemotherapry or With Low-Intensity Preparitive Chemotherapy Using Sirolimus and Sirolimus Generated Donor Th2 Cells for Therapy for Refractory Leukemia, Lymphoma, Myeloma, or Myelodysplastic Syndrome.
Thanks for posting this Amberley. This sounds like a fabulous plan. And I must say that it is really cool that 5 out of your 6 siblings were matches! Maryland is going to love you! But, they don't get to keep you, you have to come back to Illinois-we have the Blackhawks!
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