An Update from my Transplant Coordinator

Wednesday - August 29, 2012

Late yesterday afternoon, my VCU transplant coordinator called with an update of an Oncology / Bone Marrow Transplant Unit panel meeting to discuss my pending transplant and with a report of the registry search.  I came away from the phone call with a large measure of relief and a slight twinge of panic - quite a conflict and contrast, yes?  In short, the panel wants a "full match donor" for me and the national and international registry search only surfaced 3 potential "8 for 8 marker" matches.  So, out of almost 10 million people on the registry, I match 3.  It's certainly much better than having no matches that's for sure.  Matching DNA and other criteria (size, blood type, etc) is highly involved with so many criteria that must line up in order to minimize the possibility of acute and chronic Graft Versus Host Disease.  Angela, my coordinator, says that the odds of actually harvesting marrow from 1 of these 3 registrants is "not great" - in the single digits - so I will definitely not get my hopes up.  We should have a response within a month.

Nonetheless, a chance still exists that one of these three potential donors is located and then agrees to go through with the donation.  In that case, I will face a procedure that carries a 12-15% mortality rate at VCU (5 percentage points lower than the national average).  That's quite a high mortality rate from my point of view:  10 percentage points higher than the mortality rate from an autologous BMT procedure.  It gives me pause.  Is my central nervous system truly, fully involved in my lymphoma and thus necessitating an allogeneic BMT?  The lymphoma in my head was in my orbits and sinus cavities, not the brain.  The trace amounts found in my spinal fluid in my first lumbar puncture were so slight that my oncologist was unsure that they were from the spinal column itself and not a result of the insertion of the needle.  Is an allogeneic BMT too radical a response or is it the full-artillery approach needed to eradicate my cancer?  That's the Debate: Part 1.

A view of the front yard

Fortunately, as an alternative to a "full match" allogeneic BMT, the VCU panel recommends that I receive an autologous BMT:  In an autologous stem cell transplant, stem cells from the patient's own marrow are "harvested," stored and then returned to the body (engrafted) after the patient receives high doses of chemotherapy and/or radiotherapy conditioning therapy.  Sometimes, the portion of marrow is also purged of cancer cells before being returned to the patient. The goal of transplant therapy is to restore or rescue hematologic and immunologic function following high dose therapy.  The stem cells are of a type that can develop into the full range of blood and immune cells.  I  am relieved to have the OPTION of an autologous BMT.  Many cancers and blood disorders cannot be treated with an autologous transplant and, without a third party donor, the patient must wait and hope that a donor eventually comes forward.  Yes, I have "clean bone marrow" without any trace of lymphoma.  However, this designation is limited by the current state of our technology.  As technology advances perhaps it might show lymphoma cells that are currently undetectable.  Might I be regenerating bone marrow that contains some lurking lymphoma cells?  Will an autologous BMT lead to a relapse?  And then what?  That's the Debate: Part 2.

So much to consider ... and mull .. and debate....  But still time to do it .... And I have that second opinion to help weigh these options....

A bonus to being home

As for today, I am still resting up and guarding my immune system!  I would love to stay home (read: no hospital) through the Labor Day weekend.  It is absolutely fabulous being in my familiar house, cuddling with my wee greyhounds and my lovely husband, sleeping deeply and thoroughly, not connected by yards of tubing to my pump, de-accessed from my port and able to shower at WILL, and enjoying some privacy and independence.  I am very relieved to be here, holed up to protect my few neutrophils and waiting it out.