Tuesday, November 10, 2009

DAY +159: Better here, Worse there = ?

Top Line: Susan's numbers are fluctuating, with some improving and some worsening. Tests in 3 weeks should give a clearer picture

The visit with Dr. Soiffer was somewhat inconclusive. I won't run down the specific results from the various tests, because too much seems to be changing in either direction in relatively short time frames, and then sometimes swinging back. Susan's next visit, scheduled for November 30, will include a bone marrow biopsy and a PET scan. Not fun, but that should provide a clearer picture. Incidentally, the visit will also coincide roughly with the 6 month anniversary of the transplant, which is a good time to take stock.

Some of the old nemeses are back to varying degrees: liver function issues with, perhaps, some ascites (certainly stomach pains), CMV, along with the skin/mouth issues, and this has required a re-introduction of some medications, all of which makes Susan feel worse. And, of course, the constant fatigue never left. In short, Susan's symptoms and complaints are consistent with GVHD, but the upcoming tests should enable Dr. Soiffer to be more definitive about what's going on.

That said, Susan is getting out of the house a couple/three times a week, although her forays are brief. Dr. Soiffer hasn't put any additional restrictions on her activities -- she can be guided by how she feels and what she's up for (but avoiding crowds, risk of infection, etc.) -- and he does feel she is stable enough to go three weeks until the next visit. So, while not an encouraging report, it's not really a discouraging report, either. After the visit on November 30 is when I'll blog next.


  1. Hi,

    OK, not the best report, with some encouraging results. Having Dr. Soiffer not restricting you to your outside activities is very encouraging. Resting when you should is also very important. The report from your next visit can only be better,

    hugs & kisses,

  2. Dear Susan - OK so this wasn't the best report but there are a few positive notes. I'm going to linger on those and hope you do the same. I'm sending you as much positive energy and love as I can!

  3. Hi Susan,
    Just wanted to let you know that I've been following your treatment and progress and you are in my thoughts. You are some extraordinary person.
    Paulette B.

  4. Susan,
    I have been following your journey and think of you often. Sam brings news of Charley from time to time.
    Warmest regards,
    Susan Dalsimer