Ampullary Cancer: What treatments did you have?

I don't know because I chose to do all three. I was diagnosed with ampulla of Vater adenocarcinoma in January of 2023, shortly before my 59th birthday. I did my own research and consulted with a specialist at City of Hope and based on what I was hearing I came to the conclusion that my best chance of long-term survival was to have the Whipple procedure performed as soon as possible. I managed to get the surgery done by the end of February 2023. I pushed for the earliest possible date. I had clean margins but significant lymph node involvement. After consulting with my doctors I decided to follow up immediately with chemo (12 rounds of folfirinox) and afterwards radiation. Chemo was awful, radiation not so bad, relatively. It took a year to complete my follow up therapies. It took a while after that before I started feeing myself again. My digestion will never be the same but it's not that bad, really. I started taking Creon to help with digestion. I was always health conscious and in pretty good shape before this happened so it came as quite the surprise. But I had a couple of situations in life that had me extremely stressed for a long time, which I think led up to the cancer. I made a number of changes to reduce my stress levels and now, both physically, and mentally, I feel fantastic. Follow up scans as recently as last weekend have so far been clear. I don't know if, when, or where the cancer will show up again but I am very happy I went through with the surgery, chemo, and radiation. Don't get me wrong. It totally sucked and I had some really hard times getting through it all. But for me, my wife, and my children it was totally worth it.

@johnsmith1580, your story is a welcome message of hope. Welcome to the group.

I was diagnosed with Ampullary cancer in November of last year. They placed a stent to free up my bile duct because I started to turn yellow. I lost my appetite shortly after my diagnosis losing 15 through the holidays. Then at the end of the February my appetite came back and I started feeling really good. I asked my oncologist if this was normal and she said, No, it isn’t normal. They did a CT scan and it showed my tumor had shrunk a little.

I need to back up a little and tell you a bit about myself. I’m currently 75 and have been diagnosed with MS in 1984. In 2003 I have a massive exacerbation leaving my paralyzed from my waist down. My left arm does only gross motor control. I catheterize and have a colostomy. I’m rated 100% disabled by the VA SMC R2.

I have heard the term spontaneous regression batted around. I do know that this type of cancer is rare and regression is even rarer. My wife feels that my overactive immune system turned its attention to the cancer. My oncologist is only saying something is going on and is waiting until my next CT scan results. Then I will get excited and post my results. As of today I’m feeling like my normal MS self!
Rich

I was diagnosed in November after a sample of the tumor was taken during an endoscopy. I lost 15 pounds and was not hungry at all. Then I got my appetite back in late February and started feeling much better. I have advanced MS which has taken its toll on my body. I’m reminded of the saying, “The enemy of my enemy is my friend.” A CT scan early this year showed that the tumor had shrunk a little. My next scan is in two months. If it has shrunk further, then I will get excited.
All medical and surgical options were off the table because of the severity of my MS. My wife thought it was my overactive MS immune system fighting the cancer. I thought se was crazy but my oncologist said she may be correct.

I was diagnosed in November of last year. I lost my appetite and lost 15 pounds through the holiday season. Then in March I told my oncologist is this normal and she said NO. A CT scan showed that my tumor not only stopped growing it started shrinking.
I have not been on any therapy, chemo, targeted, immunotherapy absolutely nothing. I do have advanced MS. I was diagnosed in 1984 and my last exacerbation was in 2003. I am rated 100% service connected by the VA.
My wife has an interesting take on the situation. She feels that my hyper MS immune system came roaring back and is attacking the cancer. I think you can put a name on what is happening and that is called Spontaneous Regression of my cancer. I feel like I’ve won the lottery of life. I feel great and another CT scan is in a month.
Rich

Hello
I've inherited Lynch Syndrome, and was first dignosed with ovarian cancer back 20 years' ago, followed by colorectal cancer a couple of years' later. Had 17 years post surgeries, radiation therapy and two courses of chemotherapy free of cancer, before colerectal cancer returned necessitating a full ileostomy some 8 months' go.

I've not recovered well from that surgery, and now I've been diagnosed with Ampullary Cancer, and the Whipple procedure is not an option due to the already diminished range of body parts I have available. 🙁

There was talk of resection via laproscopy or endoscopy, but those hopes were dashed yesterday, so I'm in a holding pattern of ill-health already, although there's nothing obviously aggressive about the lesion/tumour at this stage. (Have had innumerable tests etc.)

So I'm just tuning in for hope and advice and progress reports from fellow victims of this rare form of cancer.

I'm in New Zealand (that small country of only 5 million people south east of Australia!); so fellow sufferers are likely to be few and far between. My next stop is my endoscopic specialist, and a pancreatic/liver specialist seeking to get together with a team of similarly qualified persons to see if anyone has any solutions for me. Chemotherapy and Radiation (again) hasn't yet been ruled out, although my body's in pretty bad shape, and they may be as unsuitable as the Whipple procedure.

Julie

@jmcws, that is a lot to take in. I can only imagine you are reeling as you continue to reframe hope. I'm tagging a few members like @robynmark @johnsmith1580 @reiki234 @survivorcan @richjh, who may have experiences and thoughts to share with you.

I look forward to your updates as you meet with the specialists. How are you doing emotionally with this? Where do you get support?

@colleenyoung

Thanks; I have a good support network; husband, family, friends, and even a regular private nurse (IV infusions), weekly masseuse… and a doctor who I’ve had for years!

I’m not yet giving up hope, and preparing myself for the worst outcome! Lack of information given the rarity, is probably the biggest problem right now; and I’m not sure that can be resolved anytime soon.