Well, New Orleans was an adventure like normal. We got lots of information on current treatments and future possibilities on Friday and Saturday and then went on a swamp tour on Sunday. Sunday morning was spent mostly in the French Quarter and it is quite impressive the amount of excitement that one sees for a home Saint's game in New Orleans.
Monday morning I was supposed to have an Endoscopic Ultra Sound (EUS) of the tumors near the rectum and an Endoscopic Retrograde Cholangiopancreatography (ERCP) to the stent between my bile duct and duadenem. The EUS was done under twilight anesthesia and proceeded without incident.
The ERCP was another issue. As soon as the anesthesia hit my system, I started to go into carcinoid crisis with my blood pressure dropping to 80/40 or so. After a number of injections of sandostatin, I climbed out of the crisis and the procedure continued. The stent was removed and then replaced. In 3 months, I will have another ERCP to remove the stent, hopefully for good. So, I spent the night in the ICU yet again...
Tuesday morning, my surgeon came by and we chatted for about 45 minutes about the future. From what he had already seen from the EUS, it looks like the tumors around the rectum may be addressable using the nanoknife. Obviously, we would try to address other tumors at that time but how far we will go at that time remains to be seen. Dr. Boudreaux's opinion is that surgery is probably 6 to 18 months out which means that ski season should be on this year!
After getting a CT scan and getting released from the hospital, we went and talked to Dr. Woltering, the oncologist for about half an hour. We went through the tests they had done on my tumors and Dr. Woltering then went and spoke with Dr. Boudreaux for a bit about my situation. Dr. Boudreaux said that I was a time bomb, waiting to go off. Basically, my disease is very advanced and surgery is an exceedingly scary proposition without proper preparation and expectations.
Dr. Woltering said that they will present my case at an upcoming meeting of the minds. Basically, all the doctors at the clinic will get together and discuss my case, the methods they have at their disposal and what is the best course of action. As of now, there are two drugs that may be applicable to slowing the disease for a while. One is Sutent and the other is (I think) temodar. I am not certain on the second drug but we are still up in the air, waiting for the meeting of the minds.
I am hoping for a chance to get in on the PRRT trials that are starting here in the states but, if I do not get in on the trials, we may be taking a trip to Europe to get treated. The treatment assumes that I have a 'Krenning score' of at least 2 (goes from 0-4) and Dr. Woltering thinks I am probably a 3 or better. This means that I should have a positive response to the treatment with only 10% of those who get treatment who do not respond.
Cost is somewhere in the ballpark of $20k and insurance may pay for some, none, or a large portion of the treatment. That remains to be seen. Generally, one needs to pay for the treatment up front (usually they want a wire transfer of the funds) and then one wrestles with the insurance company to get payment. Obviously, this would be out of network and our out of network deductible is about $7k... This means getting on the trial in the states would be fantastic but that is not a guarantee.
So, still no certain plan but we do know that ski season is on for this year. Now if we can just get some snow!
Wednesday, September 26, 2012
Saturday, September 22, 2012
No new guts for me (yet)
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.
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.
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