Re: My Introduction to the club and trouble finding help for my son
Hello all again. I need some advice badly now for my son. Does anyone know if Anderson hospital in Texas does remote consultations???
My son is unfortunately not doing well at this time. He just had a CTscan after completing many weeks of chemo, and the tumor has not reduced at all in size. They told him to apply for permanent disability now, and that the cancer cannot be cured, and gave him some more depressing information about how this cancer behaves. My DIL feels she is on the brink of a nervous breakdown, and I can understand why. My son has always assumed that he would eventually go back to work, so the suggestion of permanent disability has stunned him. His chemo was the GEMCIS combo, I believe that is correct.
If you recall, he had the Roux en y at Johns Hopkins two years ago, Lost half his liver and bile duct system. He now has a duodenal stent, and they had to put in a 2nd one in as well, when the first one seemed to have been invaded by the tumor. He has been eating better with then 2nd stent, but his stomach is uncomfortable most of the time.
I cannot understand why no one has ever wanted to use any type of radiology, since I have read about that here.
Labrador, you say you are receiving radiation, and no one has ever suggested radiation to my son.
I have always wondered why not.
The doctor finally gave him some Marinol, and he took some today. His main complaint is that his stomach always feel uncomfortable. He is able to eat some things, and does not always throw food back up, so keeping it down part of the time is an improvement.
I had mentioned Anderson hospital to my DIL a while back, and just now she called and asked me to call them and see if they would consider doing a remote consultation. Does anyone know whether or not they do this, has anyone done this???
Anderson was highly recommended here, and that's where I learned about it. He is going to Robert Woods hospital in our area, and excellent hospital, but evidently not experienced with Cholangiocarcinoma.
Sloan Kettering won't do a remote consult, and won't accept him as a patient because he has not had a recent biopsy of the tumor. Everyone at John's Hopkins as well as Dr.Schulick in Colorado say DO NOT TOUCH IT, NO SURGERY AT ALL. So a biopsy is not an option. That eliminates Sloan Kettering.
Sooo, we would like to see if we can get a remote consult from Anderson. If someone knows who the highly praised doctor there is, I would appreciate it. I will try and look at other threads, but there are many. and now I am too tired tonight. At 81 my energy and stamina is very limited now. :-)
Thank you in advance to anyone who has any advice.
Someone even mentioned in one of the threads the name of a wonderful doctor that we should perhaps contact at Anderson, but I have forgotten his name by this time.
It is late now, but I will check in tomorrow. I have had a lot going on here, and have not checked in lately, and then had password problems too.