Bile Duct Cancer..

Update on my case the 7/29/25  CT/PET scans done with contrast and radioactive agent showed my body lit up in my right breast, both lungs with multiple masses, a growth on the pulmonary artery and 4 lymph nodes. The surgical bed on the pancreas and liver showed abnormalities. August 4th another Nater test was done that came back negative.

i hate the way this website sends the message if you hit the return key. They did a biopsy of breast and right lung both negative on 9/5 I had a robotic surgery on the left lung and they removed 2 wedges from 2 masses 4 lymph nodes and the growth on the pulmonary artery all came back negative. The pancreas was evolving scar tissue and blood tests showed normal levels of bilirubin.  Therefore, everything on the scan was a false positive. Everything in the chest was granulomas due to inflammation a response from my immune system to anything detected as abnormal I am wondering of this is still the Artemide drugs still circulating in my system attacking  irregularities. My fifth Natera is again negative.  I am beginning to think I may be responding to the immunotherapy at an accelerated rate.  I also see the doctor sending my test results to other doctors within the NYU Langone system labeled referral as per clinical trial.  Other doctors are telling me “do you know how difficult it is to cure someone of biliary cancer?”  I saw that your husband is now being tested by Natera. Two days before the chest surgery I had a phone consult with one of the scientists and they answered all my questions. I now have a more in depth understanding of the limitations and the performance levels of the test as it relates specifically to biliary cancer.  Results vary by cancer type because they shed at different rates. I was told their test will show cancer 3-4 months before a CT scan.  Do you think your husband has received the drug or a placebo?  Is he almost finished with the xeloda? How many more infusions until he is finished with treatment.  I hope he is doing well and will become immune to this terrible cancer.  The chest surgery was very painful and we had to cancel our 1 month trip to Firenze Italia in October due to risk of clots or an embolism on a long distance flight. This is the second trip canceled for cancer treatment. Italia will have to wait until next year.  I will be getting a knee replacement in December so I can stroll along the cobblestone streets of Firenze pain free!  I promise to keep you and the others in the group updated as my cancer saga continues.

Thank you so much for your up-date, it was lovely to hear from you.  I am so sorry you have had such a tough time and had to have more painful surgery and hope you are recovering well.

My husband hasn't had his blood sent to Natera, just the regular tests every three weeks at clinic.  It's very interesting that it is specifically for biliary cancer, sadly as far as I am aware it is not offered in the UK.  It must be reassuring for you to know how accurate it is given your biopsy results were all negative.  I will try to investigate it.

He finished Xeloda (called Capecitabine in the UK) on May 16th.  He was very fortunate that he tolerated it well.  Just tiredness towards the end.  We don't know if he is receiving Rilvegostomig or the placebo.  He has had some unusual side effects similar to hives and recently feeling unwell but these symptoms only last about an hour and are very infrequent, maybe once a month.  Consequently they give him an intravenous antihistamine before his infusion and have prescribed it as a daily tablet.  His infusions will finish in September.  His latest scan results were clear in August.

How disappointing not to make your holiday, next year after your knee op sounds a good option, it's so important to have something to look forward to.   We haven't felt confident to go abroad this year given we never know when my husband might feel unwell, albeit for a short time.  And while he's on medication the trial seems to make insurance complicated.  So we are aiming for a cruise on the Danube next May.

Sending well wishes, do keep us up-dated.  xx

Sorry I forgot to ask, have you had confirmation from AstraZeneca you definitely had the immunotherapy drug? x

They will never tell you but I was tested for 5-FU (Capcetibine generic name for Xeloda) converts to 5-FU  in your bloodstream.the residual 5-FU result was negative, therefore, the ileus I had in March was not caused by Xeloda and the doctor determined it was a reaction to the Artemide trial. I deduced from that and side effects bone pain throughout my body, peeled skin on my hands and feet that came off in sheets, discolored soft nail bed with bumps and splitting, vertigo going from standing to lying down extreme fatigue sleeping 12 hours a day, constipation.  I also became full diabetic type 2 that ended after they stopped treatment. I do not know if the side effects were from Xeloda or Artemide.  I was paused from all drugs after 2 cycles a total of 6 weeks the only drugs I am on presently is 1 Synthroid daily and Creon 12000 before each meal.

if you call Signatura in California you can coordinate testing with your doctor. Phone # 650 489 9050 Mon-Fri 7am-7pm central time zone.Their test labs are located in San Carlos CA and Austin Texas  Signatura/Natera will send someone to your home for the blood draw.  The first step is to have your husbands tumor sample from the Whipple sent to California where they do the genetic testing for his cancer. Each person is unique.  Once they have that the blood draw is sent for testing. The first cycle is 4-6 weeks. Thereafter it is about a week.  Results are sent directly to your phone or email. Does the NIH have patient portals for you to track all your medical history and blood test results, surgical reports and CT MRI OR PET scan films and reports.  Here in NYC blood tests within 1-24 hours CT 2-3 days MRI and PET a week at most. Pathology can be 2-6 business days. NYU Langone is a very large medical /research center and not the norm.  We live an hour away by car but the results and accuracy are worth the trip

I hope this information helps you and your husband.

I am so sorry I accidentally 'flagged' the post you have just written... I meant to send you a hug!  Both words are so close together.. I think they have taken it down.  I have contacted them asking for it to be reinstated.  Hopefully they will see this message too and realise it was a mistake. 

Oh good it's back on now!  My goodness you did experience some horrible side effects.  I thought I had read, if they were very bad and you left the trial the doctors could request to know if you had had the trial drug, I must be wrong?  

Thank you for all the information, I have investigated Signatura and our NHS does not fund it at the moment.  I think it would be very complicated and expensive for us to have the tests regularly from the UK.  My husband didn't have whipple surgery, just a resection on his liver, half was removed.  They have some tissue and we can have molecular profiling done at a later date if necessary. Your hospital & consultants sound excellent.

He does have a patient portal where he can see all his blood results within hours.  The scan results are available after they have seen him in clinic, I suppose they prefer to talk to you first if there is a problem.

After I messaged you this morning he was unwell... I must have talked that up!  But as usual laid down for a few hours and was ok.  We have to report everything back to trial and I send photos of his rash.  He only has a few more infusions to go now.  

Take care x

 CillaJane  & Packaging expert 

Hi to you both..

I’ve read the thread and very stunned by it all…. I can’t add anything as I refused all treatment apart from surgery and regular scans & bloods. 

im sorry I can’t add anything, however, I do send my thoughts and prayers. xx