Friday, May 4, 2012

Hi again, so much seems to have happened yesterday and yet so little really occurred:
  • The surgeons at Children's recommend against the biopsy; as we suspected the likelihood of getting a viable sample are too remote to justify the risks.
  • Faye's radiation oncologist recommends that we wait four weeks (three weeks from today) and re-scan before beginning treatment (as a bonus this buys time to finish the school semester and try to qualify for one of the clinical trials). All Doctors seem to agree this is reasonable and would not significantly increase her risk or alter her long term prognosis.
  • We are two inches closer to qualifying for the clinical trial in California; they do not require a biopsy and they will do a one-time exemption for her age.  We've sent her medical records and if after review she still passes we will then start the application paperwork.
  • We are still in initial contact/investigation with the NY clinical trial.
  • If Faye does not qualify for either of the trials, in three weeks we would begin the VI chemotherapy originally prescribed at Children's followed by the BMT.
  • IF we qualify for the CA Clinical Trial it involves four 21 day cycles of Brentuximab (each cycle starts with a 30 minute infusion); a CT scan after two cycles and a PET scan after all four... if successful Faye would then check into the hospital for the BMT.
  • Neither of the trials should increase her risks or alter her prognosis, however, as with any trial there is no long term data to confirm this.
  • IF we proceed with a trial and it is not successful (no tumor response), we would switch to the VI chemo cycles that the Oncologist at Children's originally prescribed, followed by BMT.
You may wonder why the trials are so important and it's interesting, both trials include Brentuximab, and as I understand it Brentuximab carries a small 'payload' of chemo attached to an antibody.  The antibody is attracted to the CD30 chemical that is in some cancers (@90% of Faye's cancer has this chemical); when infused it will attach itself to the cancer cell and release it's 'payload'.  This significantly reduces the icky side effects of traditional chemo. The success rate of the MABS is comparable to that of traditional chemo.  The FDA has not approved MABS for general use but at the rate the trials are succeeding it is possible that in 10 to 12 years traditional chemo will be a thing of the past.

So there you have it, in case you were interested (!?).  Two bright spots for the near future: 1) Faye will resume school as much as possible and try to complete this semester on time though we still have more Doctors visits and tests ahead of us, and, 2) we will be at the 5k tomorrow!  ~Lolly

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