This has been quite a month. At my last appointment with Dr. Shah, we were told about her suspicions about a genetic mutation called “translocation” that showed indications on my March BMB (bone marrow biopsy). So they did another one this past month. During the waiting game, besides having a total knee replacement which was just loads of fun, we did quite a bit of research on translocation. I had way too much time on my hands! If anyone were curious, regarding my situation, it would be like 17p switch instead of 17p deletion. And it did not look good!
Because of the pain from my surgery, time was not flying by, and what I thought had been three weeks had only been two! I kept emailing my PA checking to see if my BMB results had come back. Finally, on a Friday, I saw on my MDAnderson webpage that there were results back. I knew that I’d be getting a call on Monday. I did. I usually follow Dr. Shah without any problem, but this time it was all so confusing. I tried to convey the message to Paul when he got home, but we both still had questions. So the next day, I sent an email asking for some clarification. They were very sweet as always and understood how it had gotten a bit puzzling.
The long and short of it is that the March BMB had indicated a possibility of translocation. The October BMB clearly showed 17p deletion (not the switch which would have indicated translocation.) So the point of this is that they needed to definitively determine that the CLL was back and then “type” it. I have been in what was referred to as “Minimal Residual Disease” (MRD) for the past couple years. I was in remission for two years after the stem cell transplant, then MRD for the next couple years. Now it’s moved forward to the level that it can be “typed.”
The fact that the 17p deletion has returned is not good, but it’s not as much of a death sentence as it was the first time. 17p deletion typically makes CLL not respond to treatment. That was the main reason for my stem cell transplant (that and I had all the other negative markers as well). Since the time of my original diagnosis, researchers have developed a couple new targeted agents that have shown incredible promise. They have actually replaced one of the old tried and true medications. So when the time comes, Ibrutinib will probably be my first go-to choice. And if all else fails, a second stem cell transplant is always an option. I don’t intend to go down without a fight!
But we’re still a ways from that. My WBC and platelets are still holding. They could look good for months, years, or days. My doctors will continue to monitor those numbers now that they have the typing determined. That is why we will continue with the same mantra…One Step, One Day, One Prayer at a time.
“Therefore the LORD longs to be gracious to you, And therefore He waits on high to have compassion on you for the LORD is a God of justice;
How blessed are all those who long for Him.”
Isaiah 30:18
“But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties.
For when I am weak, then I am strong.”
2 Corinthians 12:9-10
“The LORD is my strength and my song, and he has become my salvation; this is my God, and I will praise him, my father’s God, and I will exalt him.”
Exodus 15:2
