Ampullary cancer

I had a whipple in Nov 2005 for amullary cancer. I was told a wide margin was taken but it has returned now in the form of a fast growing tumor.

The Calgary doctors said gemsidabene would not work on ampullary cancer it was only good for pancreactic cancer and i should accept my fate.

I flew to M D Anderson hospital in Houston and they said they have had 505 success rate with a double dose of Xeloda and oxylaplatin chemo. I am into my fourth treatment and the tumor marker has dropped from 158 to 48, a strong sign that the chemo is working.

I am confident that M D Anderson in Houston is the No1 cancer center in the world and I would urge anyone else in my position to take a 2nd opinion there, even though I am paying for all the treatment myself and I can ill afford this,.

 I am determined to beat this and my prayers go out to everyone who is affected by this directly or indirectly

 Lots of love to all

 John Calgary canada

John,

We are so sorry to hear of your situation.  Since our initial posting, Sun's diagnosis was changed.  Pathologists at the Moffitt Cancer Center in Tampa, FL have decided that since her tumor was attached to her bile duct, it should be classified as pancreatic instead of ampullary.  Doesn't change our approach, however.  She has received 2 cycles (months) of gemcitabine, and next week starts radiation and 5-FU for 6 weeks.  We will be driving 4 hours back and forth to Moffitt every day for the treatment.  Then she goes back to gemcitabine for the remainder of the 6 months of treatment.

Please keep in touch.  We will be thinking of you.

George & Sun C

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 

Google Pan can for the website.  Good info on ampullary cancer there.   Tho it is categorized as Pancreatic , it has different outcomes.  Worth the read.   More hopeful than Pancreatic cancer.

I am 15 months cancer free.   Feeling good and enjoying life. 

On 12/19/2007 london wrote:

I was just diagnosed with periampullary cancer Nov 15. I had Whipple surgery Nov 20. Pathology showed that the origin of my cancer was in the ampulla itself. Of 21 lymph nodes removed, I had cancerous cells in three. Other than that I showed a wide margin of no cancer. I just saw the oncologist Dec 17 and am scheduled to start chemo with Gemcitabine on Jan 10. for a period of 4-6 months, three weeks on w/one week off. Oncologist wants to do chemo alone with no radiation. Feels that there's a chance of lymphovascular invasion which the chemo would take care of. Says radiation is for localized treatment and since I have very wide clear margins, it's not called for. Radiation treatments may also interfere with chemo treatments which I really need because of the lymph involvement. Does this make sense to anyone? My journey with all of this just started Oct 31 with a belly ache, so I feel like I've been in a whirlwind! I have had a great recovery from my surgery and am actually feeling fairly good. I would appreciate talking to anyone with knowledge or first hand experience with ampullary cancer. Since this is such a rare cancer, it's tough to find good information on it. Thanks in advance for any responses! I am being treated at the James Cancer Clinic at OSU Hospital in Columbus, Ohio. 

I just read your message today. I am cancer survivor for 17 years. I was dx ampullary CA and had whipple op. I didn't have chemo or radiation. They found a 3cm large cancerous mass. There was no Mets.

Good luck to you. If you have any questions please write back

Hi London!  My name's Kim, I'm 42 years old, and I was diagnosed with ampullary cancer on March 5th of this year.  I had the Whipple procedure performed exactly five weeks ago today at University Hospital in Cleveland, Ohio.  My surgeon was one of the best in the city, and I actually came home after 8 days in the hospital on a liquid/soft food diet.  No feeding tube thank goodness!  I've experienced alot of nausea and pain; but overall I'd say I'm recovering quite well. 

I also had the cancer in a few of my lymph  nodes and actually meet with my oncologist tomorrow.  I'll be happy to share any information I can with you.  Like you, I was shocked when I was diagnosed.  Had been having abdomenal pain and my gastro doctor did an endoscopy and thankfully found my tumor.  I know that they consider ampullary cancer a bowel cancer, not pancreatic.  My surgeon said I will have to have yearly CAT scans to make sure the cancer hasn't relocated to another organ, but after five years of clean scans, they consider you cancer free and cured.  Will let you know what my course of treatment will be.  I hope you're well; take care.