Monday, September 5, 2016

Tough Decision

Friday I got an email from my doctor saying, essentially, the "powers that be" at NIH, and the drug company sponsoring the trial were all in agreement that I may be retreated with the big caveats below....

"as long as you understand there is a significant risk of HUS at a higher level, and that although it has always been reversible in the past in our HCL (hairy cell leukemia) patients, there is no guarantee it will be.... Best wishes"

If you goggle HUS, we will see some of the complications (that word sounds so polite, and benign), include coma, stroke, kidney failure and heart problem - all of which sound very bad to me! With my google search having gotten my blood pressure up, I called my doctor to understand what risks he saw, and what his recommendation was, which was noticeably absent in his email.

My doctor was tied up in meetings Friday, but he kindly gave us a time on Saturday that we could talk. Chad and I spent close to an hour on the phone with him. He talked through a lot of the history of the trial, and case details of people who had developed HUS, or stopped treatment early over the past ~15 years of history across Phase 0-3 trials and the duration of their remissions following treatment.

No one who has developed HUS, in Phase 3 of this trial, has continued treatment. I was also the first person to get HUS in cycle 4. So there is no clear precedent. Everyone in the past who got HUS broke the threshold for Stage 3. I came very close to that line, but never crossed it so I was officially Stage 2. They all developed HUS earlier in the treatment as well.

We asked a lot of questions and a couple key takeaways were...
- You need 1-2 cycles once the cancer is no longer detectable in your blood to keep it from coming back in the next couple of years. I got 1 cycle post the cancer not being present in my blood.
- There have been others in the trial who developed HUS whose creatinine when as high as 5.0 (mine peaked at 1.38) and all of their issues with HUS completely reversed, with no long term damage. I was far from the worst case, so there was a lot of room between where I was and having some type of long term impact from HUS.

I finally asked my doctor, if he were me what would he do. He paused, and said it was a hard choice. Typically I have had doctors go through what recommend and why. He was clearly on the fence.

As my doctor started talking out loud on the pros and cons of stopping treatment versus continuing, he realized there was a bit of a loop in the protocol. I could come back for "re-staging" (which is the battery of tests once treatment is finished which is what they had scheduled for me this week), and if it showed MRD (minimal residual disease) then we can schedule 2 more rounds of treatment knowing I need them. If I don't show any MRD, I'm done for now.

I am flying back to DC tomorrow. I believe they are going to admit me on Wednesday for a few days of testing. My bone marrow biospsy is Wednesday and some of the other tests I had at the beginning of the trial are on Thursday. I have no clue when I will get to come home, but I am hoping it will be Thursday or Friday of this week.

It will take a few weeks to get the bone marrow biopsy results. I am hoping they will let me start to be more active to start to rebuild my stamina, and strength, and that the test results will be good and I will be done. I have been busily planning fantastic vacations with my family starting mid-Nov. Having two more rounds of treatment on a delay will put a serious kink in my travel plans!!

On the home front, we had a nice relaxing three day weekend. Laundry is done, meals for the week are planned and prepped, bills are paid and I am as ready as I am going to be to leave town again. Fingers crossed for good results from the tests this week!!


  1. Thinking of you often--good luck with the test results and treatment!

  2. Beth - you are in my prayers and thoughts! Wishing you the best of luck with the results and treatment. I know from personal experience that the doctors and nurses at the NIH are wonderful. -Kristi Snyder