I was told by NIH that the clinical trial was still in its very early phase with the lowest dose possible. It was already done on two patients, both of which initially responded but relapsed after only 4 months. It's promising but at the moment it doesn't have very good odds to convince me to go through it all. So at the beginning of the week, I sent an urgent email (or two...or three...oops) to my oncologist explaining the situation and begging him for any other possible options.
While I was sending him one of the emails, I recalled what happened when I first relapsed in January of 2016. My oncologist at the time told me she estimated I only had 5 years to live (yeah I didn't stay with her for very long afterwards), briefed me on a transplant and told me that I was to do a very intense chemo treatment known as ICE. Eventually, I got a second opinion and we went with a different kind of treatment...one that wasn't so toxic but ultimately ended up being not very effective. And then it dawned on me...there was a chemo that I hadn't tried!!! ICE chemo was also statistically proven to be successful with primary refractory Hodgkins Lymphoma (the 1% of lymphoma patients...aka me). Immediately I sent my doctor an email with this information and asked for his opinion expressing my strong desire to aim for a transplant (even though there is no guarantee that I will respond to anything).
So as I waited for his response, every trip I took to NIH to proceed with screening I did so with the hope and prayer that I may not need to go back there and resort to a clinical trial that most likely wouldn't work and under the doctors who treat me like a lab-rat and not a human being. God knows I have been a bit weary in my faith these past 2 years with cancer....but I went to the NIH chapel after every appointment and prayed for one more chance at a transplant. Just one more chance.
About an hour ago, I received the call from my oncologist. He is definitely willing to give the ICE chemotherapy a try!! It will be tough, I'll be sick, I'll lose my hair...but he and I definitely think it's a shot...my only shot...at a transplant. He warned me if/when the time comes for transplant, I cannot hesitate or delay. And I told my doctor that if he told me I needed to get a transplant tomorrow, I'd be packing my things up right now and going first thing in the morning to Baltimore. I know what the stakes are now and I'm ready to get to work. BRING. IT. ON.
(If chemotherapy was a college course...)
So I'm supposed to get a biopsy done this week to double check and make sure I'm not dealing with a hybrid cancer (that would change the whole outlook entirely if it is...hopefully, that's not the case). During the rest of the week, my oncologist is going to get in touch with my transplant doctor again to get their opinion. If they aren't on board anymore, he's going to speak with other transplant specialists at Johns Hopkins and even the transplant coordinators at NIH if necessary. But it looks like my prayers have been answered and there's a chance transplant may actually be in my future. The fight isn't over yet and the battle to stay alive has begun. This has already been the best Christmas present I could ask for, to be honest. I'll update again as soon as I start the treatment which will be in the next week or two. I'm going to pray that I don't experience any adverse reactions and I tolerate it well. More to come but tonight is a victory!!
The following video was essentially what was going through my head this week...(the king and sheriff are the two NIH doctors I've been seeing)
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