I'd love to report that I can no longer feel any swollen lymph nodes on my body, but the last of them just refuses to go away. I mean, it's still not growing, and hey, it does seem to be the last one, so I shouldn't complain. But it might have adopted some of my stubbornness. My next CT scan is in a couple of days and it will tell me the full story of what's happening on the inside. I'm pain-free, have for a while been absent the stabbing sensations in my lower spine, and am exercising again, which is all good. So hopefully the scan just confirms what I'm feeling.
From what I can tell the magical Brentuximab is still working. I wish it was a first line treatment for this kind of cancer so folks could avoid going through painful chemos that are unlikely to work, but I suppose the $10k per dose price tag of the brentuximab relegates it to an option of last resort. Hopefully that all changes once the medical community is able to study the drug's effects in the longer term (and hopefully I don't grow any horns or tails from it).
Brentuximab works like a smart bomb, targetting very specific proteins that exist in tumour cells and dropping a toxic payload after it binds to them. Meanwhile, it wreaks (relatively) little havoc on the rest of my body. Contrast this with the first two chemotherapies I tried, which were less targetted and more like a napalm carpetbombing that obliterated a whole host of cells, tissues and processes in my body (my fingernails still look like they belong to something that crawled out of a swamp this morning).
I had my fourth treatment of the Brentuximab a few days ago. It wiped out my energy for a few days this time, and I've got a tingling sensation in my toes and in a couple of fingers. That's not uncommon, but considering the alternative it's a small price to pay. If the numbness spreads the hospital will cut my dosage back in order to prevent any permanent nerve damage, but I say full speed ahead. I won't need fingers and toes if I'm dead.
That said, my hematologist thinks that might've been my last treatment anyway. The stem cell transplant team at the Ottawa Hospital has apparently found some closely matched donors for me on the international registry -- not 100% matches, but matching in 7 out of 8 HLA markers. Those are human leukocyte antigens: proteins in cells that your immune system can use to determine if cells belong or need to be rejected. In a transplant situation, a patient's HLA markers are compared with a donor's, and if 8 out of 8 markers or 10 out of 10 match, it's perfect. The better the match, the less likely you are to face a risky graft-vs-host rejection situation (although sometimes that can actually be good in terms of the new immune system rejecting any remaining cancer). So it is slightly disappointing to not have a perfect match, but as some people don't find matches at all I'll consider this lucky. I think the individual donors still need to be contacted to make sure they remain healthy and willing, so it's not a done deal yet, but things seem to be on track for an October transplant. I'll find out more about the plan next week.
Bethematch.org has a good description of this stuff. Once again, I'd encourage everyone to check it out or the Canadian equivalent at onematch.ca and consider being a donor. Think about it: Brentuximab is likely not a cure, just a temporary treatment, so this transplant might be my one shot at a permanent cure for this disease, and out of millions of people on the registry there are as few as two matches for me - two people who don't know me, but who have signed up for this regardless. You might be the one match for someone else out there.
They won't tell me where the possible donors are from -- they like to tell everyone "they're from Cleveland." I might have the option after a year or so to find out. I wonder how much it costs to send a case of beer overseas.
What else is new? Well, it's been a few weeks since I got my lung catheter removed, and I couldn't be happier. I no longer have to sleep with something that feels like a spoon jammed in my back. Showering is once again pleasant and my lungs remain clear. I'll spare you the story of its removal, but it did involve a not-so-awesome (but kind of awesome-in-hindsight) kurosawa-esque splash of blood.
Finally, I saw a naturopath last week. I had some reservations going in. Given the effectiveness of my current pharmaceutical experience I don't fully buy in to the benefits of alternative treatments, especially considering the junk science around cancer and nutrition that pollutes the internet. Nevertheless, it was a positive meeting. I learned a bit about the functioning of my body and how healthy and unhealthy cell growth works. After some discussion, he has me trying out the ketogenic diet which has (apparently) shown (supposedly) good results in (maybe) limiting cancer growth by limiting glucose levels and the development of "insulinlike growth factor 1", or IGF-1, which is an important hormone to support growth. Unfortunately, it also is key to tumour growth. So yeah, I'm basically on a low-carb, adequate-protein diet. I'm not really confident that this will have any impact on the cancer, and there seems to be no peer reviewed research on it, and it's kind of counterintuitive, but A) I feel good and B) it can't really hurt at this point.
But, my new hobby, baking bread, was ill-timed.
I'm realizing that most of the "keto" community on the internet has absolutely no idea what good food should taste like, so I might have to start putting some recipes on here.
If I die during the transplant having spent the last month of my life eating this low carb garbage instead of pizza and focaccia, I'll be very upset.

John, I'm sure horns or a tail would be quite becoming.
ReplyDeleteAndrew
Beautifully written, once again. All the best.
ReplyDeleteYou are going to do great.
ReplyDelete