Sunday, February 14, 2016

So Much for Tumor Stability

I am now off the Cabozantinib clinical trial. My latest MRI showed 11% growth in my tumors since the last scan on November 22nd.  Basically my tumors grew 22% in the 6 months I was on this clinical trial.  Not good! I have now decided that peptide radionuclide receptor therapy (PRRT) is my next treatment plan.This treatment is not FDA approved in the US, so the only current availability is:
  1. A clinical trial at Memorial Sloan Kettering Cancer Center (MSKCC)
  2. Going to Excel Diagnostics in Houston to do the PRRT under a “Right to Try” law.   
I could also go to Europe where several countries provide PRRT to neuroendocrine cancer patients. Given that I live in New York City, going to MSKCC would be the easiest option.  Also, my husband is having medical problems now as well and I am both patient and caregiver, a very difficult set of responsibilities.

I met with the MSKCC oncologist, Dr. Diane Reidy-Lagunes, on Wednesday to discuss the PRRT trial.  Her staff was concerned with my platelet levels because they were below 200 in January, which is the minimum allowed to be admitted this trial.  Since I have been off Cabozantinib for about 3 weeks, my labs have been improving and my platelets were fine.  I am now scheduled for several scans before the PRRT occurs. Since I have not been off Sandostatin for 6 weeks, I am scheduled for the scans later this month.

It felt strange to go back to MSKCC after leaving my first doctor there about 4 years ago.  Dr. Reidy and the clinical trial assistants were very nice and professional, unlike my prior experience.  I am looking forward to being in this trial.  I hope it shrinks and stabilizes my tumors for a while.