First Consult at Johns Hopkins: Let's "Change Things Up"

Friday - November 23, 2012

Joe and I are heading up the interstates before dawn on Friday for our 11 a.m. meeting with our new Hopkins oncologist.  Here's my Thanksgiving appreciation for all of the professionalism, finesse, knowledge, and instincts of my medical team and my sincere wish for continued good fortune and a clear, smooth path ahead into 2013 (or at least next month!) ....

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Joe's summation of the meeting's take-away message

Ten hours round trip with no traffic, brilliant skies, and some very interesting conversation with the Johns Hopkins lymphoma specialist.  After interviewing me to fill in some blanks in my treatment history, confirming that I was visiting as a precursor to a BMT, and then giving me a physical exam (still no palpable lymph nodes - nope, not even in the groin no matter how hard they press), the oncologist started our meeting in the consultation room saying, "I'm going to change things up."   Right then, I knew he was going to advise against a bone marrow transplant and shifted - quite literally - to the edge of my seat.

Dr. Ambinder confirmed that I had responded extremely well to my (very appropriate) Hyper CVAD protocol.  Given clean PET and MRI scans that showed no tumors, he feels that a BMT with its inherent infection risks and graft-versus-host-disease dangers might not provide me with the best outcome.  He explained that up until very recent years, JHU might have referred me for transplant at this point in my treatment but that their current thinking is to "watch and wait," to avoid the dangers of BMT when patients have responded this well to chemo, and to be ready to go forward with transplant when / if the lymphoma relapses.  In my case, when pressed (as we of course DID press) to lay out odds, he hazarded a 50% chance of relapse.  In case of relapse, the R-ICE protocol is available.  He also said that there was the "possibility, if not the likelihood"  that I might be "cured" (love that word!) and that to go through a risky and debilitating BMT without need would exact a heavy toll on me physically.  Dr. Ambinder then cited my liver enzyme numbers as evidence that "there are limits to what our organs can take" and that a BMT hinges on enormous doses of chemotherapy.   AND he reminded us that a transplant is no guarantee against relapse.  Dr. Ambinder advised that this course of "watchful waiting" would include CTs and MRIs every three months and regular bloodwork.  He did not see the benefits of continuing the high-dose methotrexate since I am no longer "bridging" my time until transplant and since my liver is in distress ("organ failure" = not cheery words).  He'll consult with Dr. Perkins on Monday.


So we are drawing breath and processing information.  Joe and I have been wrestling with the question of whether to "sit tight" or to pursue a transplant for months.  What are the odds?  It's a hunch either way; there are no guarantees and we will never know if we made the correct decision at this fork in the road if I have a poor outcome.  Having another consult is invaluable and - let's face it - Dr. Ambinder is the gatekeeper to the Hopkins BMT and his recommendation is key.  Our decision-making process just got a little easier  :) 

I am heartened by some numbers, namely that a Hopkins' mini-haplo BMT carries only a 7% mortality rate.  If it comes down to it, those numbers are much less terrifying than the standard allo rates (20-25%).  I am feeling somewhat "settled" that the chemo might be at an end - for now.   I'm also feeling "positive" to the extent that the mysteries of lymphoma allow.  "Positive" is fine for now.  I'll also profess to feeling "satisfied" with and "grateful" for my treatments and my medical team.  And my family and friends  ....