Wednesday, April 13, 2011

ONE YEAR + 314 DAYS: GVHD round 4 - Improving

Top Line: Susan is “doing well” overall, according to Dr. Soiffer, but it’s complicated.

Susan and Bob’s most recent Dana Farber visit was spread over two days (4/11 & 12). Monday began, as usual with a visit to the vampires, followed by an examination by Dr. Soiffer. Here are the salient points:
  • clinically Susan is doing well even though she isn’t feeling all that well.
  • Blood work results were good; slight elevation in white count but nothing alarming.
  • Ascites has definitely diminished.
  • With respect to the GVHD symptoms, mouth looks better, eyes about the same, skin continues to be very rashy, but since it’s not too itchy, leave it alone rather than add additional steroidal medications.
  • Positive adjustments in medications: prednisone reduced by 33%, pills for ascites reduced from 3 to 2.
  • Soiffer recommends, but does not insist upon, trying flaxseed oil for the eyes; Susan is considering.
  • At next visit, which will be around the 2 year anniversary, Susan will have a flow cytometry performed. This is a technique for counting and examining microscopic particles (e.g., cells, chromosomes) in the blood and should reveal the status of the “markers” that define Susan’s disease. In other words, it should provide a quantifiable report card on Susan’s condition; however, if the results are not definitive, it may be necessary for Susan to undergo a bone marrow biopsy, which, to understate the case, is not pleasant.
Next, Susan was seen by Dr. Jacobs, her oncological opthamologist.
  • Clinically, her eyes seemed about the same as last visit two months ago, although Susan feels they hurt a bit more. Dr. Jacobs did comment that Susan’s case was far from the worst she has seen and that the chronic GVHD which Susan is currently experiencing at a relatively mild and non-worsening level (as manifested in eyes, mouth, and skin) is actually an encouraging sign.
  • Some background: the discomfort is due in large measure to dry eyes, to combat which opthamologists often insert plugs to block the tear ducts, thus keeping the eyes moist. There are four tear ducts altogether – upper and lower for each eye.
  • Dr. Seedor, a NYC opthamologist working with Dr. Jacobs, inserted one plug (of a possible four) about two weeks ago as a “proof of concept.”
  • When Dr. Jacobs examined Susan, she determined that the plug had come out (as can sometimes happen).
  • Dr. Jacobs decided to insert 3-day dissolving plugs in all four tear ducts to judge whether this treatment was providing relief, and how much (to be determined by how Susan feels with the plugs vs. after the plugs have dissolved in three days). If the plugs turn out to be effective, then Jacobs and Seedor will confer about Seedor putting in four permanent plugs.
  • Dr. Jacobs also gave Susan a sample of Lotemax, a prescription medication for dry eyes. Susan’s eyes are feeling better today, but it’s impossible to determine how much of the improvement is due to the Lotemax vs. the temporary plugs. After the plugs dissolve (which should be in another day or two) it will be possible to evaluate the effect of the Lotemax, as well as to determine whether to go ahead with permanent tear duct plugs.
On Tuesday Susan saw Dr. Treister for her mouth:
  • Dr. Treister definitely felt that the condition of Susan’s mouth had improved since the last visit two months ago.
  • He is having her continue with the mouth rinse she started as part of the clinical trial (see blog entries for 11/30/10 and 1/19/11), but at a reduced frequency, which is good news.
  • However, there is no apparent improvement in the condition of the lips. Susan has found that OTC lip balms provide as much topical relief as does the medication Dr. Treister prescribed. He is switching her to a new, steroid-based medication which she is to use 2X/day while she may continue to employ OTC balms as desired.

The net: Susan’s “vital signs” with respect to the disease are good and her GVHD, which is at worst a moderate case, is stable to improving. We’ll take it. The next DFCI visit is scheduled for June 6th, just after the two year anniversary of the transplant procedure. You‘ll be able to read all about it here in the blog shortly thereafter.

1 comment:

  1. Hi Susan,
    It is great to hear that you are doing better. Loved seeing your photo after all these years! Would love to keep in touch. Warmest regards,
    Cheryl Coblens Sherman