Why Wait?

Yesterday was a frustrating day at MDA. Results from my bone marrow biopsy were inconclusive on the day that we had thought that we would decide on the next steps in my treatment plan. Instead, we would have to wait until the cytogenetics (FISH) results came back and probably reschedule another BMB. :/

In addition to the delay because of incomplete tests, my new leukemia doctor had a conversation with my stem cell doctor and encouraged her to look at me from a different perspective. From a leukemia doctor’s perspective, I am not at a stage that he would recommend treatment. From a stem cell doctor’s perspective, I am relapsed, no longer in remission, and we need to fix that! I have leaned toward my stem cell’s doctor’s view because I like NOT having leukemia!! But after researching my most recent alternatives, the risks seem to far outweigh the benefits at this stage of the game.

The leukemia drugs have shown some positive results but come with some rather unpleasant side effects. The positive here is that you simply stop the drug and you stop the side effects. The negative is that it is not a “cure.” It is a help. It helps people stay alive with CLL, which is a good thing. The DLI (donor lymphocyte infusion) would provide a way back to remission, but the possible GVHD side effects cannot be stopped by taking something away. It’s like a runaway train. It can possibly be managed with steroids and other drugs. But it can be a lifelong issue or it can take your life. There is no way of knowing until you get there.

Those of you who have been following me from the beginning may remember that I had a unique negative “marker” originally called 17p deletion, which is what pushed us forward with the more aggressive treatment plan early on. It appeared that the transplant remedied that issue even though my CLL returned. However, we have recently been told that it might not be a certainty because they are only looking at very small percentages of my cells. They may have just not SEEN the 17p deletion yet. ☹ With that in mind, the recommendation is to “watch and wait” until my CLL grows or until my 17p deletion pops up again. At that point, there would be no question as to what to do. It would have to be the DLI.

I was reading an article this morning about relapsed CLL treatment options and it referred to the “watch and wait” course as “watch and worry.” I completely understand! While I have determined every day to lay this at the Lord’s feet, it does require a daily decision. Some days are easier than others. This has been a rough stretch. But I know that worry will not add a day to my life. (Matthew 6:27; Luke 12:25) So we will continue as we have…to take this one day, one prayer at a time.


“Peace I leave with you; my peace I give to you. Not as the world gives do I give to you. Let not your hearts be troubled, neither let them be afraid.”
John 14:27