Introduction/American expats in London
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Megan,
Welcome to our group. I’m sorry that you have reason to be here, but am also very impressed with how quickly you have gotten on top of understanding the scope of this
Disease and moved on to appropriate treatment. Your husband is lucky to have you advocating for him. We are here for you both, to guide, support, encourage – whatever you need. Please keep us posted on your husband’s progress.Debbie
Morgan, it sounds like you are in good aggressive hand but never discount a 2nd or 3rd opinion! Very important to keep that in mind so that you never second guess AND different ONCs see different things. At least you seem to have a lovely view there. I so understand how you feel. Please keep us in your loop.
Thank you, Lainy.
We are currently sitting in London Bridge Hospital overlooking the boat traffic on the Thames. We are in exactly the same room we were in during our first admission, which is both comforting and bizarre depending on my state of mind.
We are planning on doing chemo and investigating immunotherapy options in both the UK and the US. The surgeon told us that since he is “young” they will most likely recommend a hard-hitting chemo.
Thank you for the link!
Best,
MeganDear Megan, welcome to our remarkable family and as you have already seen, the best place for CC support.
Megan, I could not believe what I was reading as your husband parallels what mine went through like a twin! Unbelievable. 10 years ago Teddy had all the same including the head of the pancreas. In all these years there has not been one patient that I can remember who walked exactly the same way. He also was staged at 2B.
The Whipple takes quite a bit of recovery and Teddy was closely watched with Scans every 3 months. They decided no chemo. May I ask where your hubby is now being treated? Please let us know if they decide to follow up with Chemo and also how he is progressing. Take a deep breath as it truly is a long journey but there are so many new treatments now. Wishing you both the very best. Below is a site you may find helpful.http://cholangiocarcinoma.org/newly-dx/
Hi everyone. Thank you so much for providing a forum so full of support and information. I hope someday to give back in some way.
Right now, I’m sitting in the hospital with my husband who is nine days post Whipple. This horrendous journey started back in January when my very fit, healthy husband turned jaundiced after a week of “not feeling well.” I figured he had a dodgy street sandwich in Poland, but sadly no.
After a quick doctor’s appointment, he was admitted, scanned and scheduled for an ERCP. The first scan showed a common bile duct dilation and obstruction. The ERPt ended up being the first misstep on this journey. The doctor admitted “forcing” the wire and stent during the procedure with the result of acute pancreatitis. He was in ICU for a week and a regular floor for two weeks. He lost 20+ lbs (10kg) and was critically ill for quite some time. All scans, brushings, and pathology, were negative.
We interviewed two surgeons in London who recommended a Whipple. We took all pathology back to the States when visiting family and saw a doctor in Baltimore and a Dr. in NYC. All recommended the same and told us that 90% of the time, they will operate and find cancer. The NYC doc recommended waiting and waiting until the pancreas was healthy, but we were worried about waiting too long and becoming inoperable. At this point, we were 2.5 months past the original issue.
So, we headed back to London and had the surgery last Saturday. It was difficult because of the residual problems from the acute pancreatitis. Pathology came back positive for cholangiocarcinoma. He is T3, N1, M0. There was no evidence of metastasis to other organs, but the cancer was touching an adjacent lymph node and had encroached on the head of the pancreas. In “American-speak”, he is a Stage 2b.
So, recovery has been uneven. Infected wound, infected pockets of fluid in his abdominal cavity and a pancreatic leak. He survived the surgery, so we’ll take that as a win.
We are supposed to meet with an oncologist while we are here. I expect them to recommend chemo, etc. We are also sending the pathology and slides back to the US for a second opinion (and possibly a third). Never trust one set of eyes (quote from my mother, the pathologist).
I’m sure this was a long and blathering post. I hope to offer something more constructive eventually.
Best and thanks,
Megan
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