On 12/29/2007
Rising Sun wrote:
London, We had hoped to hear back from you by now of our rather lengthy email of Sun's amupllary cancer. In the event you are still interested and reading this message board, the following additional info is provided. We saw 2 G.I. specialists at the Moffitt Cancer in Tampa on Thursday. They provided an entirely different treatment proposal. Even though Sun has wide clear margins, no blood vessels were involved, and all 13 lymph nodes tested were clean, there was some attachment to nerves in the area. This is supposedly another method of the cancer may metasize through the body. Based on this, they recommended she undergo the old style of cancer treatment, comprised of 5-Fluoracil chemo and simultaneous radiation for 5 weeks. The radiation would be directed to the area where the tumor had contact with her nervous system. But the radiation cannot start until her belly drainage has stopped. She had the Whipple procedure on 31 Oct and still has fluid draining from a belly hole. They said it is not infection drainage, as she has no fever, so must be fluid being produced by one of the organs involved in her Whipple procedure. As our 2 local non-specialist oncologists have both recommended Gemcitibine (either by itself or staggered with radiation), I suggested she take several cycles of that intervenously until her belly heals, then switch to the 5-FU/radiation combo for 5 weeks, then switch back to Gemcitibine for the remainder of the 6-month period. At some point in the first Gemcitibine treatment, her belly drainage should stop and belly heal so they can surgically implant the port for further chemo treatment. The specialists said there is no data to support which chemo/radiation treatment is more effective, and if we want to take the more agressive approach that I just described, they would suggest that to her local oncologist. However, Sun still is undecided which path to take, as according to the specialists at Moffitt, the 5-FU is a more agressive chemo, and will most likely result in side effects including hair loss. Other side effects such as mouth sores, nausea, and diarrea, may be mitigated through other drugs, but the hair loss is pretty much imminent. Sun's next appointments with her local oncologist and surgeon are next Wednesday and Thursday. Hopefully she will have made her mind up by then which route to take.
The specialists also said although ampullary cancer used to be extremely rare, they are now getting about 1 new case per week of it at the Moffitt center. They also said the Gemcitibine treatment alone is the primary treatment for pancreatic cancer, and were adamant that ampullary cancer should not be confused with pancreatic, as they are completely different. This contradicts what our local oncologists have told us as they have said the only difference is the location of the tumor. The Moffitt specialists said this is not a true statement, and we should not assume that treatment for ampullary and pancreatic cancers should be the same.
Again, good luck to you and hope you will keep us posted as you are the only other individual we have found with ampullary cancer.
Sun & George Cole
Sue & George,
Afer watching the postings in this site for over a year, I have finally found someone else who has had 5-FU and radiation at the same time. I often wondered if my husband's doctor was on the right track when I was seeing everything but 5-FU and radiation which was given at the same time for 6 weeks.
My husband had a whipple done 1 1/2 years ago and his ampullary cancer was stage 3 with 2 lymph nodes having cancer out of 21. The only symptoms he had was a big hard tummy but being a man, he would say it was all muscle. Needless to say, it was a large tumor which produced a complete blockage in the duodenum. He had no jaundice. He just had the belching and flatuas. He was being treated for GERDS at that time.
January 30th, 2008 he had a catscan from the neck down to the groin. At this time, they see no reoccurance. He will continue to receive catscans to monitor whether it has come back. We continue to pray it doesn't.
By the way, my husband had longer thick hair. He did lose some of hair but he kept most of it. It was not noticeable that he had lost any. He did lose some of his body hair tho. Not sure if this is unusal but the doctors told him he wouldn't lose any with this chemo. He did have the sores in his mouth, general fatigue but did not throw up. Towards the end of chemo and radiation, he did say that alot of food didn't appeal to him or just made him quesey.
Every morning I wake and thank our good Lord I have my husband for another day. Life is so very precious. Isn't it?
God bless all of you!
Jo