Yesterday I received the dreaded call from NIH. After spending a good 15 minutes going over health questions and reviewing the risks involved with the clinical trial, I got some of my own questions cleared up along with a general schedule of events which I'm not crazy about.
They told me that if all goes well with the blood tests, scans, and biopsies, then I can start on the clinical trial as soon as the 18th. If that's the case, I go in on that Monday to get the T-cells taken out of my blood through a catheter. Then I have no plans until that Friday or Saturday when they will want me to come in and do 3 days of chemo (this means I could very well be doing chemo on Christmas morning...lovely). During this time they are genetically modifying my cells so that by the 27th, I'll go into NIH as an inpatient, receive my cells and then be monitored until January 6th...guess I'm not celebrating New Years either...yay...so much for celebrating the holidays.
While I'm inpatient, there is a very good possibility that I will have to deal with CRS (cytokine release syndrome). This is like when your body responds to the flu or a virus...except ten times worse. I can experience fevers up to 106, high blood pressure, quick heart rate, and even neurological side effects like problems with speech. They told me this is common and even deadly, but also reversible if caught in time.
As if that wasn't enough to scare the living daylights out of me, I also found out that only 2 other Hodgkin's Lymphoma patients have done this clinical trial...both of which initially responded, but in a matter of a couple months relapsed. Currently, they are still in the first stage of the trial and that means they are only administering the smallest dose. Meaning...if this doesn't work or I relapse, I can't go in and get a higher dose...it could be years before they go to the next phase. I would have to resort to "some other therapy" and I'm already low on options.
So although I'm prepping going through hell and back again for this clinical trial, I've already sent my oncologist an email with this information and have told him that if there is any other trial with better odds (even out of state or country) I would rather shoot for that. I'm that desperate. I will not go down without a fight but at the same time, I must admit, I'm starting to wonder if there will ever be a cure for me. As much as I want to keep pushing for answers and options, I can sense I'm already starting to lose hope. After everyone told me how "promising" this clinical trial is, it doesn't seem to be for my particular cancer. I don't want to surrender but I also don't want to fool myself into doing something mentally traumatizing if it will have hardly any effect on me.
In the end, I'm just going to have to wait to hear back from my oncologist. I have an appointment to get A TON of bloodwork done and an EKG tomorrow. I told the doctors at NIH that I refuse to go forward with any other scans or biopsies until I receive the blood test results. I'm not doing a repeat of this past February. And why bother testing anything else if I may not even be doing this trial at all (either because the blood tests come back and I'm not ready, or I find a better option)? Nothing to do but wait and see, I guess.
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