It's been a tough winter for most people, although here on the island it was mostly mild and not very wet. It's always my favourite time of year as it is symbolic of the hope of renewal.
On Thursday March 27th I saw my treating specialist Dr. Yee who had been away since July. Although I had been seeing other doctors regularly it is Dr. Yee who has been seeing me for almost 8 years now, is most knowledgeable and whom I have total trust in. On the positive side he said that I am doing really well. My response to iBrutinib is great. My lymphocytes and white blood cell counts are almost normal and my platelets are in triple digit territory which is great. One of the things I really respect about Dr. Yee is that he does not sugar coat anything. So unfortunately, he confirmed my suspicion: iBrutinb will likely stop being effective at some point. This means that the disease will mutate to become resistant to the drug and continue to progress. The history of this drug is only about 10 years or less and there is a subsection of people who have "fallen off" it. CLL is a very difficult disease to treat because it is relatively slow growing and has time to evolve and resist most known treatments. Just as a reminder here is a great definition of CLL.
It's important to put this into context. There was a recent study which concluded that there was a tremendous response rate (89%) with patients on iBrutinib for over 5 years. But, as I have learned, given my genetic testing (FISH) results which puts me into a higher risk subset, and that my CLL was resistant to traditional chemo (FR), it's good to be prepared for the day when iBrutinib stops working. So what's next? Currently there is only one other drug option avaialble to me in BC. It's called Venetoclax. Basically it inhibits the cancer cells from ingesting a protein and thereby inducing cell-death. Similar to iBrutinib but a different and more aggressive mechanism. Here's more information. It's only available in BC on "compassionate grounds." This means if all other treatments fail. It usually only works for about 2 years.
My ultimate options are not for the feint of heart. The first one is a stem cell transplant. I was accepted as a candidate for this years ago, but age is a factor. As I get older the procedure becomes too dangerous. There is really only a 4 - 5 year window. The risks are very great. A 30-40% chance of mortality just from the procedure. In other words a third to almost half die in the process. And if I survive there is about a 60% chance of HGD (host graft disease) or of GHD (graft host disease.) In plain language either my body rejects the cells or the new cells kill me, one organ at a time. Here's a really simple explanation. I would be a candidate for an ALLO (another person's ) stem cells. It's a very tough choice because if I survive I might be worse off than before or if it's successful it could potentially be close to a cure.
The final and most experimental option could be CAR-T therapy. You may have read about this latest innovation in medicine. It's part science and part voodoo. The theory is that my killer T cells (which currently are not working properly) are removed from my body. Then they are exposed to a virus and trained to be more active. Once they learn they are multiplied in a lab and then reintroduced into my body to kill the cancerous cells. Here is a great comic book-like explanation of the process. There has not been great success for CLL and in fact quite a few have died from the treatment. Plus the cost is prohibitive: about $ 500,000.00 US. Currently it is only being done in the USA however the Vancouver Hospital Bone Marrow Transplant Unit will be starting a program very soon. Dr. Brian Koffman who started the CLL Society and who is also a patient, had FCR (chemo), a stem cell transplant, and iBrutinib for 6 years all of which failed, is now undergoing a pioneering trial of CAR-T in Seattle. He has been a long time support leader and blogger. Currently he is blogging about this treatment and you can follow his incredible journey here. Let's hope he does well. One day I may have to follow in his footsteps!
Hopefully iBrutinib will keep on working for me and I won't have to make any of these decisions for a while.
So there's a lot to think about and a lot to celebrate at the same time. So it's important to remember that I am feeling really great! My health has improved to a level I have not seen in many years. But, as usual it's a real mixed bag. Glad to be doing well. But at the same time fully aware that it's borrowed time. Over all, happy to be alive and feel the warmth of the Spring air.
Remember to stop and smell the blossoms!
It looks like their might be more challenges ahead. I know it's been a bumpy ride hasn't it? But it's sure not dull! Until the next time, thanks for ridding along and for all your support. Don't forget to get updates by filling in your email address at the bottom of the page.
