Moonface, Here I Come

Like glue to a first-grader, a little bit of GVHD is good but a lot is - surprise! -  a big mess.

Jeff has been growing more and more despondent.  Mouth pain and ulcers in his mouth and throat make mealtime less than enjoyable at times.  Shoulders sagging, he dutifully swallows his many pills.  Sighs, head-shaking, more sighs.  He complains of blurry vision.  A weird rash appeared on his torso. 

He'd begun a couple of new medications around the time new symptoms appeared.  He completed two courses of Amoxicillin prescribed by the oral surgeon with a week in between.  And he started Ursodiol (“liver flusher”).  We began to think that his mouth ulcers and skin rash were an allergic reaction to medication.  After all, Donor Nicole is allergic to many antibiotics, including Amoxicillin.  As today's oncology appointment approached we began to believe the skin rash and mouth/throat ulcers, together with the high liver counts, were a good indication GVHD had arrived in force.  

We were right.  At today’s visit Dr. Porter had Jeff pull his lower lip down. 

“Now the upper lip.”  

Jeff did so but Dr. Porter had intended him to have both lower and upper lips pulled back simultaneously. Jeff awkwardly exposed his teeth looking like a horse under a vet’s examination.  

“That doesn’t look bad,” Dr. Porter said.

“Yeah, but they don’t feel like my lips.  They’re dry and numb.”

According to Dr. Porter, Jeff's blurry vision is also attributable to GVHD.  They will cancel the liver biopsy which was to happen tomorrow (to rule out any other reason for the high liver counts and was important to do if only the liver was affected), and the pre-procedure COVID test.  Stop Ursodiol which didn't appear to do anything for his liver anyway.  Add steroid mouth elixir, high dose of oral steroids, Bactrim 3X a week.  Continue antifungal and antiviral meds.  And check blood on Monday to see whether it is safe to begin tapering the steroid dose.  

Seven vials of blood were drawn.  Seven precious vials of what Jeff calls “Nicole’s blood.”  Results:  white blood cells in the normal range, Hg nearly normal, platelets dropped a bit and, of course, very high liver counts.  

Jeff’s primary question for today’s visit was not answered favorably.  He had high (unreasonable) hopes that Dr. Porter would allow his PICC line to be pulled out.  Oh, the disappointment!  He seems more upset about keeping the PICC line than about the warning to reduce sweets while on steroids.  

GVHD is what Jeff's medical team was watching for, expecting.  Dr. Porter considers it a good thing.  He knows what to do about it.  Still, we know how tricky it can be to get off of steroids and, in the meantime, adjust doses, treat side effects – and develop moon face.  It is unfortunate.  We’ll deal with it.  

A Little GVHD

We are relieved to have had our second doses of COVID vaccine.  Jeff had a sore neck, shoulder and arm the first night and vomited once the next morning.  I remembered too late that our pharmacopeia includes plenty of anti-nausea medications.  As soon as Jeff’s tummy settled a bit he took a Compazine pill and was fine thereafter.  He was perturbed to have had a reaction to the vaccine (“What next?!) particularly since I had only a very mild headache and almost no pain at the injection site.  I rolled towards him in bed and he griped jealously, “You can lay on that arm?!”  Later I gloated by waving my arm all around.  It isn’t fair, I know.

For two weeks Jeff’s liver counts were elevated, indicating Graft vs. Host.  We began to worry that Jeff would have to start steroids for GVHD before his second COVID vaccine or before his body would have time to build antibodies.  On Wednesday Jeff had his second vaccine in the morning and had labs drawn at home in the afternoon.  The results were posted on Penn’s portal on Thursday morning – even  higher liver counts.  Ugh.  Nurse Heather – via Bluejeans video conference - assured us that “a little GVHD is okay” as long as it accompanies GVL (Graft vs. Leukemia).  So far it does not have to be treated.  Heather says we don’t want steroids to suppress the T cells.  (Nicole’s lovely T cells are doing such nice work; Jeff’s blood is again 100% donor cells!)  If it becomes necessary to treat for GVHD, then we will deal with it.

Heather told us about a drug that is standard for some transplant patients with GVHD of the liver.   Actigall/Ursodiol acts by flushing the liver and might be a reasonable alternative to steroids in Jeff’s case.  Dr. Porter later agreed and prescribed it.  Jeff says it’s a blessing to live long enough to have new drugs and treatments available to him.

While discussing Jeff’s sore breasts, Heather said she was glad the pain was bilateral, less chance it could be cancer.  She searched for the last time his hormones were checked.  She laughed and said she’d brought up a pregnancy test from 2011 which, oddly, is part of a panel of tests used for all patients.  “It was negative,” she quipped.  At his doctor visit later this month, hormones will be checked. 

We were able to report that the rosacea has been manageable since the dermatologist changed Jeff’s medication.  When Heather asked what Jeff is doing to take care of himself, he said he’d had only a half a beer three weeks ago (now no-beer due to the liver issue), eating fruits and vegetables and some sweets and treats.  We told her about yoga and our walks.  Jeff told her his feet hurt, are super-sensitive/numb, and is concerned it may impede his ability to go on long walks.  She recommends Epsom salt baths and Vitamin B6.  And more yoga.  She told Jeff he is doing well, “You’re on autopilot.”

He laughed and said, “Heading for a crash?”

“No!  Smooth sailing!” 

We went on another walk along the canal towpath, getting in shape for a 5K (walk, don’t run!) for Gift of Life in May in the Philadelphia area.  Nicole, Jeff and I have been asked to participate in the virtual opening ceremonies.  We are pleased to tell how Gift of Life connected Nicole and Jeff and how Nicole gave Jeff the gift of life not once, but twice!