July 8, 2020 at 6:11 pm #100273bglassModerator
Welcome to our community. I am glad to hear that your father is feeling well and has been able to continue with his daily activities despite this unexpected diagnosis. Ampullary adenocarcinoma is very rare, and seems to be considered a cousin illness to cholangiocarcinoma. My impression reading about ampullary cancer is some of the treatments are similar and the prognosis is a little better than with cholangiocarcinoma.
If you do decide to seek treatment in the U.S., you may find the provider map information on the Cholangiocarcinoma Foundation website helpful in identifying doctors with experience with these rare cancers. The website clinicaltrials.gov may help you identify trials both in the U.K. and in the U.S. I looked through the website, and there seem to be a few options. Once you have the results of the genomic testing this will hopefully open the door to additional treatment options and clinical trial possibilities.
If you find clinical trial options of interest in the clinicaltríals.gov website, you will see at the bottom of each trial listing a point of contact whom you could contact to ask any questions.
If you look at the websites for some of the major cancer hospitals in the U.S. with experience with GI cancers, you will see that some offer remote second opinions, where for a fee, you can send the patient records electronically to be looked at.
Please stay in touch and let us know about the treatment options your father pursues. Given how rare his case is, this information will be valuable for other patients and caregivers contending with the same diagnosis.
Take care, regards, MaryJuly 6, 2020 at 6:58 pm #100266mirandajhouseParticipant
Hi there – I was hoping to find out if there is anyone on this site who has had experience with Ampullary Adenocarcinoma.
My father was diagnosed with ampullary adenocarcinoma in March 2019 and he had successful Whipple Surgery in May 2020, followed by chemo for 6 months. He was given the all clear earlier this year. Unfortunately we heard last Friday that he now has Liver Metastases, Stage 4. He is otherwise pretty healthy and walks around 2 hours a day and plays golf 2 to 3 times a week (without a buggy/cart).
I am based in California but he is based in the UK and has had all the previous treatments and surgery in the UK. As we haven’t had the greatest response for potential treatments there we are exploring options in the USA (or anywhere in the world) and wanted to see if there may be some other possible treatments/surgery available to him.
The initial oncologist in the UK said that it is inoperable and they suggested the chemo drugs Gemcitabine with Cisplatin.
We have reached out to other oncologists in the UK who specialize in Bile Duct Cancers and have looked into some trials in the UK but have been told as its ampulary adenocarcinoma it wouldn’t be a match for the trial drug (Pemigatinib) (the hospital have just heard back from the sponsors and unfortunately they will not allow my father into trial screening as they think it’s very unlikely that ampullary cancers will harbour a FGFR alteration). I believe another potential trial drug that has been mentioned is Topaz 1 – we are waiting for more info about this. Anyone have any experience with Topaz-1?
We were also told that the immunotherapy drug Tecentriq (in combination with Avastin) wouldn’t work for ampulary cancer as well. Another immunotherapy drug that was suggested is Pembrolizumab – used in conjunction with Gemcitabine with Cisplatin. We are also waiting for more info on this one.
He is going to UCL Hospital in London tomorrow to do a liquid Foundation Medicine profile so I am hoping once we get this this might be useful for potential trials.
Right now, we are looking to get a second (or third or fourth) opinion and find out if there are any possible alternatives to just chemo in case it looks like the only way to get treatment/surgery is for him to come to the USA.
Any thoughts or suggestions would be greatly appreciated.
- This topic was modified 1 month ago by mirandajhouse.
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