Because some have asked, I’ll share a little update on Jason and his clinical trial.
We returned to OSU in March. Jason had a bone biopsy, CT scan, and they took about 30 vials of blood! We went back the following week for results. I have pages of documentation that I can’t explain…information about T cells, B cells, lymphocytes, and a host of other things. The bottom line is he qualified for the trial and began taking his medication March 17. That’s three pills a day for the next two years (at least) that would cost round about $10,000 a month without participating in the trial and without insurance. Sheesh!
Here is something Jason posted on his Facebook page:
“Thanks for all the prayers and well wishes. Some of you have asked, so a quick update…No significant side effects for me so far. First couple of days are going very well. If you’re curious/bored, you can read about the drug (Ibrutinib) I am taking here: http://www.imbruvica.com/cll
It is a HUGE step forward when compared to chemotherapy. A simple explanation is that chemo is poison…it poisons cancer cells to kill them (good), but also poisons other healthy tissues like taste buds and stem cells that create blood cells (bad). This medicine isn’t chemo. It’s oral, so I can take it at home every morning instead of going for infusion. Its mechanism is to look for a specific site on cancer cells (in my case, white blood cells called B-cells). Think of the drug as a square peg that will only fit a square hole on B-cells. The cool thing is that this square hole is what the cell needs to replicate. When it is blocked, it keeps the cancer from growing and the cells that are blocked eventually die, reducing the presence of cancer. Some have had complete remission with the drug (CR), but more often than not, it is medically managed indefinitely. It is already FDA-approved for my type of cancer, but the trial I am in is combining it with a widely-used vaccines (TDAP, pneumonia) to see if it can help patients better fight infection. Infections are one of the more common issues for patients with CLL. Best of all, the side effects are very low for most (and for me, so far!).”
We decided to do the trial because we knew we were getting closer to Jason needing chemo, which is the current standard of treatment. The CT scan did show that a few lymph nodes had already become swollen, which is one of the indicators that leads to needing treatment.
As for side effects, he’s had headaches, he bleeds and bruises more easily, and unfortunately it seems to be making him very tired (which of course was already a problem just from the CLL). I am hoping, for his sake, this last part is temporary as his body adjusts to the meds. Initially, the cancer cells are drawn out of the bone marrow and there is a spike in white cells as the body begins to fight them. He has to have weekly blood tests and OSU called to say that his hemoglobin is off. This may require them to take blood in order to balance it back out. We go back next week and will know more then, as I don’t understand how all of this works.
My deepest gratitude for calls, texts, Facebook messages, etc. We have to pick and choose what we are involved in right now, and I am grateful to be home full time so he has time to rest without feeling guilty. Keep those prayers coming. I truly feel them!