Tuesday, October 27, 2009

DAY +145: a Bit of Chop in the Water

Top Line: Susan is likely experiencing some GVHD, and it's being treated

Dr. Soiffer was able to see Susan's results today and to confer back and forth with Nurse Amy, who did see Susan yesterday. Here is the summary:
  • The good news -- the flow cytometry test, performed because Susan's neutracils and lymphocytes are out of balance, revealed no, repeat NO, CLL cells; in other words, the transplant is working
  • The other news -- Susan's persisting body rashes and facial blotching, along with a white coating in the mouth, are indicative of GVHD (Graft vs. Host Disease); normally this would be treated systemically with steroids, but see below
  • Also, Susan's liver enzymes are elevated again, which at this stage is another indicator of GVHD. She will have to go back on her hated liver pill, the one she believes was most responsible for her nausea; we shall see
  • Another old nemesis has returned as well -- CMV (cytomegalovirus) -- necessitating the re-introduction of Valcyte to Susan's meds regimen
  • Steroids, which would be indicated for some of her GVHD symptoms, can increase a proneness to infection, and CMV is an infection, which is why Dr. Soiffer is holding off on the steroids for the time being
  • Susan will have blood work done in NYC next week, and on the basis of those results the Boston team will decide if and how to adjust treatments
  • I will report via this blog as soon as we have Dr. Soiffer's assessment and direction, based on the blood work to be done; the date is uncertain at this point (maybe next Tuesday?)
  • Susan is scheduled to return to Boston in 2 weeks, on November 9, and the results of that visit will be posted late that evening
No, this is not the kind of glowing report we've been accustomed to the past few visits, but remember that GVHD is a common occurence and Susan is being watched closely and treated carefully.

Otherwise, how does Susan feel about being back in NYC and what has she been doing? The answers are "good" and "not much." The sojourn in Spencertown served its purpose very well, but it was time for a change of scene. Bob is now available seven days a week and he doesn't have to do all that driving. People can stop by to help out or just say hello when Susan is up to it. The Siegels have been able to eat out cautiously and sparingly. And Susan got to see her first movie since May -- they went to a 2PM showing of The Invention of Lying. There were four other people in the theatre, which was the idea. Of course, with these new test results, it will be prudent for Susan to curtail her already limited activity somewhat more.

Again, expect updates in a week or so after the next bloodwork, and then on November 9th after Susan's next Dana Farber visit.


  1. Hi,
    Guess who, you are right. It's me. Ok, the report is a little confusing cause Jerry uses very medical terminology which I don't understand. I understand you were probably expecting to feel better at this point, but you are doing fine considering what you have been through. I'm very happy to see that the transplant is working. Just didn't think it would cause all of these other nuisances. I'm sure being back in the city has helped a lot. See you soon, love to all the Siegels,

    gig & rick

  2. Chin up!!!! Just focus on the good news (which is really good!) and follow doctors' orders and I'm sure you'll be fine. You have the perfect team - love, support and medical knowledge.

  3. Can't wait to see you. Every day I continue to light my candle for you.

  4. Hi Susan,
    I'm grateful for the update and descriptive report. Sorry it isn't all good news. It's been quite an ordeal. Now that you're in the city again, I'll let you know when I'm heading that way and will check to see if you'd like company. I trust you'll be candid about having visitors.