Day +3775: This is for my outliers…

”…this is for my people.
Living on the fringes,
trying to figure out how to mend this
Desire to really thrive
while trying to improvise…”

4/1/2021: I had a surprisingly good meeting with my transplant doctor at Johns Hopkins today. It’s my first visit in 18 months – all of our communication has been via email and lab results.

He began with telling me how good I look and the pronouncement that because I relapsed later than any patient he’d ever seen, we’re in uncharted territory. I think he said something about being in “no man’s land” – I can’t remember his exact words. Imagine that, me an outlier. He confirmed that my blood counts look great and that I’m in remission; my chimerism is back up to 100%. All excellent news! I’ll probably relapse again eventually but I might not. Because my marrow is a hundred percent donor again, I might be cured. “We really don’t know.”

I basically have three options for the path forward:

  1. Donor lymphocyte infusion (DLI)
  2. Continuing Vidaza treatments and monitoring counts, DLI if relapse recurs
  3. Discontinuing Vidaza and closely monitoring chimerism and blood counts, resuming Vidaza and/or DLI if relapse recurs

He said he thinks I’m well informed and intelligent enough to decide for myself which way to go but if he were deciding for himself, he’d go with option three because his philosophy is simply to do no harm. He doesn’t think continued Vidaza treatments at this time would offer a better prognosis than resuming them as needed. If I eventually have a DLI, I’ll probably get GvHD but in that case, there are now better drugs to treat it than when I had my transplant.

My current plan is to watch and wait with regular exams and labs. I’ll see my hematologist monthly and see my transplant doctor again in three months. Chimerism can be checked with a blood test. I asked about his threshold to determine relapse. He said now that we know what’s wrong, any reduction in counts or chimerism will be promptly addressed. The diagnostic delays over the past year occurred because relapse at this stage was practically unheard of; it was unthinkable. There were so many other more likely possibilities to explore.

And so the journey continues…remember, regarding our blog, no news is good news. Don’t forget to name that tune!

xoxo,
Karen

p.s. I’m adding chimerism and DLI informational links to the sidebar for further reading.

4 Comments so far

  1. Wow! This sounds wonderful! And of course we don’t think you are an outlier. LOL

    Wishing you and Michael a Happy Easter!

    Love,
    Cathy

  2. Cathy S Johnson on April 1st, 2021 at 3:23 pm
  3. Wonderful you are in remission! I see my transplant doctor early May. It’s a bumpy road we walk.
    Kathy

  4. Kathleen Scott on April 1st, 2021 at 6:00 pm
  5. Karen – it’s nice to get positive news! I hope you are feeling well enough to enjoy the outdoors!

  6. Lori on April 1st, 2021 at 8:01 pm
  7. What great news!!! I would have picked the third option as well if 100% donor and good counts. As unpleasant as the treatment was, it did the trick, hopefully for good!!! Something that should be apparent when looking at lab results is the trend, they flag the out of range results on a report, but a simple graph showing the trend would be more useful.
    I had to google the lines of the tune, being an outlier might not be so bad 🙂
    Celebrate!
    Love to you both and all those who on this journey.
    Debbie

  8. Debbie W on April 2nd, 2021 at 12:46 am

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