Stephanie and I have been spending the last couple of days at a patient conference in New Orleans for neuroendocrine tumors. There have been many very good presentations along with a few boring ones and some that have little to nothing to do with my variant of these tumors. Yesterday had a very emotional presentation from a patient who got a multi-viceral transplant.
A multi-viceral transplant is a transplant of two or more of the abdominal organs. This can be any of the small intestine, large intestine, liver, stomach, pancreas, or kidneys but the are all replaced in a single operation lasting about 8 hours. Today we got a presentation from the surgeon who has been performing all of these transplants at the university of Indiana. The transplants have been getting done since about 2005 and have effected a complete cure from neuroendocrine tumors for several people.
The survival charts are also quite interesting. The survival rate drops off as one would expect for the first two years but then it flattens. At this point, there is about a 71% survival rate and this continues for as long as they have been performing the transplants. Furthermore, many of those who have received the transplants are now living without any anti-rejection medication as their bodies have accepted the transplants as their own.
I have tumors constrained to the abdomen which is one of the primary requirements for this transplant and gave us hope for this being a possibility. However, I also have metastatic disease in the peritoneum that surrounds the abdomen. We asked the surgeon if a multi-viceral transplant could include the peritoneum and he said that he has not done it yet but did not see any reason it would not work. However, it is not something that he wants to do at this point.
What this means is that one of the cures we had heard about 3 months ago is not available to us at this time. On the other hand, if I am able to survive for another number of years, they may be willing to attempt this variant of the transplant on someone like me. So, one door closes but it may re-open in the future.
Tuesday we meet with my surgeon and the oncologist. After that meeting, we hope to have a real plan for the next few months/years and I will be posting again shortly after that meeting to let everyone know where we are going and what we will be doing. Thanks everyone for the warm wishes and thoughts as we work through this journey.
Ron, my thoughts are with you my friend. Give your lovely wife a big hug and tell her how thankful you are for her love and support through all of this. You are both my heroes.
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