Update — all good
Posted by Barry Willdorf in Bonnie's Email Journal, What's New on November 6, 2011
Dear Family & Friends,
It is almost 18 months since Barry’s second transplant and he is cancer-free. (He’d rather I write that “the doctors believe he is cancer-free”.) The reason the docs know this is that he has chronic Graft vs. Host Disease (cGVHD). There would be no GVHD without an H. It manifests itself in his skin, red and sclerotic, and he has been treated for this with the dreaded Prednisone, a miracle drug, with very nasty emotional and physical side effects. They are (finally, after much begging) tapering down on the Prednisone and Barry will start in a clinical trial with Nilotinib to treat the cGVHD. (Nilotinib is Gleevec 2.0 because Gleevec is out of patent — don’t we love the drug companies…) The trial is here if you’re interested http://med.stanford.edu/profiles/frdActionServlet?choiceId=showClinicalTrial&&studyId=6317&fid=6165. David Miklos is the principal investigator.
Barry asked the other day why cGVHD is such a big deal if he doesn’t really mind the skin problems. Read the rest of this entry »
Barry’s new first birthday
Posted by Bonnie Willdorf in Bonnie's Email Journal, Health, What's New on May 18, 2011
Dear Friends and Family,
Today is the one year anniversary of Barry’s second transplant. Many people count that date as another birth date. Barry’s health is good. He has some minor GVHD (graft vs. host disease) but that is a good thing because he has a graft. He never fully engrafted with the first transplant. He is on steroids (not a lot of fun) but we are hoping that he will be able to get off of them in the future.
We met his amazing and generous (two-time) donor. Here’s a photo of them together, taken a few weeks ago. Read the rest of this entry »
Much to be thankful for
Posted by Barry Willdorf in Bonnie's Email Journal, Health, What's New on November 20, 2010
Dear Family & Friends,
This has been a great week. Results from last week’s biopsy show no disease and that Barry is almost completely engrafted. Read the rest of this entry »
What a week — The Good (really really good), The Great (Giants win the Series for the first time in SF), and the Ugly (except for our fair state)
Posted by Barry Willdorf in Bonnie's Email Journal, Health, What's New on November 3, 2010
Dear Family & Friends,
What a wild ride we’ve been on health-wise. Last time I wrote, Barry’s engraftment was dropping. Last week his white blood count and absolute neutrophil count (neutrophils fight infection) plummeted and he wasn’t feeling well. After four shots of Neupogen, his counts recovered, and in the meantime, they did another chimerism (engraftment) test. Read the rest of this entry »
News
Posted by Barry Willdorf in Bonnie's Email Journal on September 2, 2010
Dear Family & Friends,
We’re home — very grateful to be here and beginning slowly to recover our strength. Both of us are completely and utterly exhausted as well as traumatized by the whole experience which was much, much harder the second time around.
On the (really really) good news front, Barry’s bone marrow biopsy of August 16 showed No Evidence of Disease! When we met with David Miklos on August 20, he was thrilled at the results. While reading the narrative report from the lab, he kept saying things like “the cellularity is great” and “this marker is great” and he finally said the following two phrases:
“This is as good as it gets” and “Go live your life.” He also said we didn’t need to see him for 3 weeks and the less we saw doctors the better.
On the bad news front, we finally got the chimerism (engraftment) results late last night and this is what David wrote: Read the rest of this entry »
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Photo by Roslyn Banish
