The 1966 film Fantastic Voyage involved injecting a
miniaturized submarine with miniaturized scientists into the body of a scientist
to hunt down and destroy an otherwise fatal disease in his body. Essentially, that’s what’s happening inside
me right now.
Instead of Raquel Welch in a form fitting cat suit, I have a
compound that is weaponizing my own T-Cells into hunting down and destroying
leukemia cells. The process is called
Immunotherapy. It differs from standard
chemotherapy in that it is not an outside agent that unselectively kills cells
that look like cancer, but rather a way of stimulating my own immune system to
identify and kill the cells.
My last biopsy revealed that I still have some leukemia
cells, despite 9 months of intense chemo.
I’m sure you’re aware that fighting bacteria with antibiotics can lead
to “super bacteria” that is resistant to antibiotics. This is similar to what I’ve
experienced. The cancer cells that
survived the chemo are apparently resistant to it, meaning that another tool is
necessary. So, I’m currently being infused with Blinatumomab (trade
name: Blyncyto), which is in a class of immunotherapy drugs called BiTEs (which
stands for bi specific T-Cell engagers).
It is bi specific in that it does 2 things. It identifies and puts a receptor antibody on
the cancer cells and puts what amounts to a seek and destroy molecule on my
T-Cells that will enable these immune cells to locate and explode the cancer
cells. Kind of like having that miniature
submarine from Fantastic Voyage inside of me.
The Blyncyto is fed through a pump attached to my
PICC line and infuses me 24/7 with the medicine. I’m into my second week of this and side
effects have been very minimal…apart from having to lug around a fanny pack
that contains the pump and the medicine.
I’ll be continuing this protocol until mid-April when I’ll get unhooked
for two weeks and then reconnected for another 28 days. After that, I’ll be undergoing a stem cell
transplant from a donor.
The 10/10 match donor I mentioned in my last post
disappeared from the registry. No reason
was (or ever is) given. That leaves us
with a 9/10 donor who seems to be willing to move forward. I know nothing about this donor other than
that he is in the US. I’m continuing to
search for a 10/10 donor, although my doctor seems comfortable with moving
forward with the 9/10, since the missing protein is not a real important one in
terms of success or rejection. So, if things
go to form, next steps are to have the donor tested for things like HIV, hepatitis,
and other things what would be problematic.
Similarly, I’ll be evaluated on a “co-morbidity index” to make sure I’m
up to the transplant procedure. If all
goes well, I’ll begin the procedure in early June. It will involve wiping out my own immune
system with heavy duty chemo and replacing it with the donor’s bone marrow stem
cells. I’ll have a new immune system that
is cancer free and, if all goes well, cured of BOTH leukemia and multiple myeloma.
Note: even though my myeloma has been in
remission for many years now, it is not cured. It could reappear, although the
longer it stays quiet, the less chance there is of this happening. The transplant is the only avenue for curing
it completely.
There IS a bit of a silver lining to my recent
relapse. Although it was disappointing, having
it happen now gives me the flexibility to do all this crazy stuff…wheras if it
happened 5 years from now when I’m in my 70s, I might not clear the “co-morbidity
index” and therefore would not be able to do the transplant. Under that scenario, I would have just had to
continue to tamp down the disease…essentially kicking the can down the road…until
the next best treatment protocol is approved.
For now, I’m still on the lookout for a donor. The ideal donor will probably be of Ashkenazi Jewish heritage. Individuals over age 60 will not be considered, as the cells I need DO deteriorate over time. I’m told that the “fresh date” for these donor cells is between the ages of 18-44. If you know anyone in the “sweet spot” and willing to donate, please pass along my individual link to the registry: http://join.bethematch.org/ForEd. The donation kit is sent out at no charge for individuals between the ages of 18-44. They will charge $100 for the kit to individuals between the ages of 45-60.
Right now, life is pretty calm. Other than the constant companion of the fanny
pack, I feel fine. I’m very optimistic
with how this will all turn out and consider myself fortunate to be able to
take advantage of these new treatments and techniques.