October 27, 2012 – Update on Barry’s health – slowly trending up

Dear Family and Friends,

It’s coming up on three weeks since Barry was hospitalized and we’re finally starting to see some progress.  His cancer, the very rare T-PLL, is in his abdomen and impacting his digestive system.  The good news is that it isn’t in his marrow and that his graft is intact. He has been treated with two chemos, Nelarabine and Fludarabine (one course each) and yesterday his symptoms were enough better that the docs decided not to move to another treatment, Campath.  Campath is the monoclonal antibody that got Barry into remission twice for his transplants and would be the treatment of choice for this T-cell leukemia.  However, it does come with a high risk of infection and it also would most likely impact the graft.  So we’re glad to avoid it for now.

He’s been really sick, lots of abdominal pain and discomfort and until his digestive system starts working we’ll be here.  Lots of opiates and a Nasal Gastric tube in his nose draining his stomach fluid.  He’s on IV nutrition.   The side effects of the chemo he’s on (next round starts Friday) are mostly neurological and he’s tolerated it well.  Since the cancer is not in his marrow, the only way to judge the effectiveness of the treatments is by his symptoms.  The marrow is clear and the abdominal CT-scan was not definitive.  The diagnosis came when they drained the fluid from his abdomen (he had ascites) and tested that.  This is all very strange, and the docs are, once again, marveling at Barry’s weird cancers.  David Miklos said that cancer is smart, but we think David is smarter.  He was visiting one day and the Hematology Fellow asked him what his experience was with PLL.  ”All 3 cases?” he asked.

I’m staying at the hospital with him.  There’s a fairly comfortable cot here in his room and I’m ok.  Having confidence in the medical team here counts for a lot.  I’m not nuts about some of the younger residents, but that’s the yin and yang of a teaching hospital.

Your emails, calls and texts also keep me going.  Barry’s still too sick for visitors.

Slow, steady progress is what the docs want and are beginning to see.

Let’s hope for more.

Much love,

Bonnie

 

 

 

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