Sunday, July 8, 2012

not dead yet

Andrew titled this post -- fortunately, he keeps his sense of humor throughout.  Sometimes it's a real drag to be such tragic figures, day in and day out, so he told me to update the blog with "not dead yet" and leave it at that.

But I know that many of you would like some actual details, so ... We finally made it to Sloan Kettering last Thursday.  We had a very long, thorough visit, which was satisfying if not happy.  We're just so comforted to be there, in this place where all they do is think about cancer, treat cancer, all day long.  We first met with one of Dr. Z's medical fellows.  I can't remember his name, but he was lovely and had really done his homework on us.  He said he wanted to relate back to us our entire journey from the  beginning, and that we were to jump in if he missed anything.  Obviously, this was not something he could do if he only viewed Andrew's chart for 10 minutes prior to our visit.  He knew every detail -- and that was just so amazing.  We've seen so many doctors during all of our many hospital visits, and you end up telling each of them the same story over and over.  Here, he told us our story!  Off to a good start.

After the medical fellow had finished the history and examined Andrew, Dr. Z came in.  We didn't have to go over the whole history again, he just got right down to it.  Everything in cancer, he told us, starts with the diagnosis.  And Andrew's diagnosis has even stumped Sloan Kettering's top doctors and pathologists.  Without a definitive diagnosis it's very difficult to know which drugs to give, because some are only effective on certain types and so forth.  Dr. Z believes that Andrew's rare cancer is most likely a small cell leukemia that transformed into a large cell lymphoma.  The types are difficult to distinguish -- it looks a lot like a mantle cell (which they thought at Westchester), and also kind of like a CLL (type of leukemia), which Dr. E had thought at Albany.  The problem is that they can't say with 100 percent certainty because it's demonstrating certain gene markers of each, but not all.  So, they're planning to continue testing the tissue block from the original biopsy, plus take a biopsy of a new node that has appeared on andrew's neck.  Cancer is very smart, unfortunately.  It keeps changing and mutating, so after a few months you may have something very different than what you started with.

Fortunately, Dr. Z confirmed that all of the treatment Andrew received thus far was appropriate -- no mistakes were made.  It's just possible that the chemo was likely never going to have worked.  He said we really should have seen a clean PET after the first rounds of hyper-CVAD.  We saw a lot of improvement, but it should have been clean.  So ... Dr. Z does not favor the autologous stem cell procedure that was recommended at Albany.  He said that stem cell transplant is not an appropriate term -- it should be called stem cell rescue -- and that what Andrew needs is an actual transplant, which would come from donor bone marrow.  Essentially, the stem cell rescue is just more chemo, and would not ultimately be effective for Andrew.  What Andrew will get is called an allogeneic bone marrow transplant.  He will receive high intensity chemotherapy to put the cancer into remission, followed by a transplant from (hopefully) one of his siblings.  The chemo will be much more intense than the hyper-CVAD he originally received.  In an effort to destroy the cancer cells, it will literally destroy his bone marrow/immune system, thus the need for a transplant.  It's kind of like the bionic man -- "we can rebuild him!"  The first challenge though, is to get a better diagnosis so they know which chemo will be most likely to put the cancer in remission.  Andrew will have a biopsy this week (still waiting on details), and they will use that info to make a decision.  I'm hopeful that the chemo will then start next week.  They do want to start things as soon as possible, because you don't want to give the cancer more opportunity to grow.  He's feeling pretty good now, though fatigued.  I'm glad he's stronger going into this than he was last November.  It won't be easy for him, but we're hopeful.  Dr. Z is so confident and knowledgable -- we're so grateful that we're under his care.

I will try to update more regularly, though sometimes it's just so hard to write about it.  Andrew sends all of his thanks for the love and support.  He's doing well right now, and is feeling very positive and ready to tackle the next phase.


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