Thursday, December 10, 2009

DAY +189: Good News

Short and sweet folks. I'm copying in the email text received from Dr. Soiffer today:

From: Robert Soiffer
To: Robert A Siegel
Cc: Amy Joyce
Cc: Susan Kargman
Subject: RE: Pet scan and Bone Marrow Biopsy
Sent: Dec 10, 2009 3:35 PM

By both PET Scan and Bone marrow there is NO evidence of CLL or lymphoma

There is a modest amount of residual fluid (ascites) still remaining in abdomen

OK. Of course, this is wonderful news -- the transplant has done just what we hoped it would do -- but don't go breaking out the bubbly just yet. Susan continues to have her "Y"-days, largely courtesy of the ascites, and there remains, and will remain for months to come, the risk of Graft vs. Host Disease. The various ways that this can present are to a greater or lesser degree uncomfortable or worse. The condition can generally be managed through, but not always, so we are hopeful but must remain vigilant. Susan's next DFCI visit is scheduled for January 4th. Look for the next blog entry that evening or the following day.

Wednesday, December 2, 2009

Day +181: a Good Report

Top Line: blood work and preliminary quickview of PET scan look good; awaiting bone marrow results and definitive reading of scan

Susan tells me that Dr. Soiffer was "quite happy" with her progress and told her, as he gave her results, "This is where you smile." However, let's not get ahead of ourselves as the full story isn't in yet. Here are some specifics:
  • white count is normal
  • LDH is normal
  • liver function is improved, although bilirubin is still slightly elevated.
  • the rash that Soiffer thought was GVHD may not be and he is referring Susan back to a dermatologist
  • Dr. Soiffer thought the PET scan looked good, but it needs to be interpreted by specialist for an authoritative assessment; expect that in a day or two
  • the dreaded bone marrow biopsy was difficult, but not horrendous (being drugged up helps some); it will be a week or so before results are available
  • if the scan and biopsy results support the promising readings on the blood work, Susan may be taken off the liver &/or anti-rejection (Prograf) medications; for now, the Valcyte (for CMV) continues
  • the next DFCI visit is scheduled for Jan 4
All in all, this is a good, although tentative, report card. In a week or so, when we have all the results in, I'll post again. Susan continues to have some better days and some that are not good, although the nausea and extreme stomach and core discomfort are now largely gone. Mostly it's a matter of continuing fatigue and some days that are just very yechy or yucky or whatever.

We did visit on Thanksgiving for desert and Susan actually looked quite good -- trim with all the weight she's lost and surprisingly perky (low light and makeup obscured the rash/blotchiness problem). If you didn't know, you wouldn't have known. Unfortunately, the day after was "the day after." Guess she dipped a little too deeply into reserves to be up for the holiday and all the preparations she did and then had to pay the price, but she has recovered. So, it continues to be an up and down affair, but the trajectory is positive overall. Remember though, there's a ways to go.

Back to you all in a week or so, and again after the January 4th Dana Farber visit.