My wife
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I’m very sorry to hear of your wife Frank.
My wife Karen was diagnosed with later stage 3 cc on the 11th November 2015. The family was in shock as the first instance we had of a problem was 6 weeks earlier when she complained of a nervous tummy. A blood test indicated a liver disorder and after 3 weeks of hospital investigation cc was diagnosed. They are unable to operate and gave 6-9 months, depending on the success of chemo. Gem/Cis was offered.
We spoke with Dr Leslie Blumgart on the phone he suggested a couple of other specialists in the UK we could meet with. The Christie in Manchester and Prof. Lodge at Spire, Leeds.
After reviewing the case notes and scans they came to the same diagnosis although Prof Lodge felt that our local hospital were pessimistic with the prognosis and suggested a 50/50 chance of chemo working and if it did then she may have 1- 2 years.
Cyber-knife and PDT were not possible as the cancer had spread into her lymph system as far as her neck.
She has struggled with her first cycle of chemo so the dose if being reduced by 20%.
A bile duct stent restored her appetite and we have managed to keep her weight up although the anticipated muscle wasting is evident.
Karen is fairly young (56) fit and strong so we are hopeful as hope appears to be the only thing that we can latch onto at the moment. – Tony
Frank, welcome. I want to encourage you to get your wife’s tumors genetically tested via FoundationOne or similar company so that you can explore clinical trials for new targeted therapies. Her doctor should be able to arrange for that. Best of luck to you both! -Matt
Frank,
Sorry for the late response. Listening is what we are best at. When I joined this board, I posted long topics and also reached out individually to members whose stories connected with me. Only thing I would have pushed for earlier (in our experience) is the genetic testing so if we need to apply to clinical trials, we had the information there.
Other lessons learned (again for Mom)- we should have had a port installed earlier for Mom and we delayed too long in going back for fluids during chemo treatments.
Besides “lessons learned” with this horrible disease, all I can offer is my best wishes., love and hugs.
Take care,
CatherineHi Frank,
I too, would like to welcome you to this board of amazing people. You will find great support and invaluable information along the way. I was 41 when I was diagnosed, and that was almost 6 years ago. Feisty and red headed what power!!! That attitude will get her and you a long way. Keep us updated on your progress and know I am sending hugs and prayers your way!
MelindaHi Frank,
Welcome to the site. Sorry that you had to find us all here and I am sorry to hear what you and your wife are coming through right now, but real glad that you have joined in with us here as you are so in the right place for support and help and will get loads of both from all of us here.
Thanks for sharing what is going on right now for you both and please feel free to post away as much as you want and ask questions and we will do what we can to help in answering them if we know the answers. We do not always know what the answers are but will do our best for you no matter what!
Looking forward to hearing more from you Frank.
My best wishes to you and your wife,
Gavin
Frank…..I too would like to welcome you to our site. So sorry for the reason to find us, but we are happy you are here. How is your wife fairing with the treatment? Does she significant side effects?
Second opinions have become standard of medical care. We have listed on our site centers treating a high volume of Cholangiocarcinoma patients:
http://cholangiocarcinoma.org/for-patients/major-cancer-centersPerhaps some of our members will share with you the names of physicians they have come in contact with. Please stay in touch and share with us the progress being made. We are in this together.
Hugs,
MarionOh, then you are just where you are supposed to be!! So glad to hear your wife is feisty then she can put on her pink boxing gloves and perhaps glue some glitter on them! Keep your attitudes upbeat and you will get through anything. Sorry I didn’t correlate Siteman to Barnes. If you go to our SEARCH engine at the top of the page and type in Chapman I am sure a ton of posts will appear on him. 2 of our members I can think of went to Chapman, Kathy and Brenda. BTW we were almost neighbors as I was born and raised in KC. MO.
We are at Barnes-Jewish’s Siteman Cancer Center currently under Dr. Singh, but thanks for the name drop. My wife has said she’d like a second opinion.
Oh, and my wife is only 43 years young (and a feisty redhead)!
Frank, welcome to the best place to be for CC support but sorry you had to join our remarkable family. Yes, Frank get those boxing gloves on and start fighting. You are doing everything right but also be aware that we are big believers in 2nd, 3r4d and 4th opinions. Just to validate each other. There is a great Surgeon in St. Louis, Dr. Chapman at Barnes Jewish Hospital. We have had several members who were treated by him. Wishing you and your wife the very best and please keep us updated on her progress. Below is a site you may find helpful:
http://cholangiocarcinoma.org/newly-dx/
Our story starts back in April when my wife could no longer handle the pain in her abdomen, so we went to the emergency room where they did some tests. A CT scan did show a spot on her liver, but they said they see spots all of the time and it was probably nothing. They assumed the pain was a gallbladder attack and sent her home as the pain subsided.
A month later, the excruciating pain returned so we went back to the ER. Same tests, same result, but the doc recommended we see our regular doctor and get a thorough checkup. He stressed we get the spot on the liver checked, too.
We were then sent to a GI who did every gallbladder test (and upper GI, lower GI) under the sun and recommended we see a liver specialist. I’m retired military so she was able to get an MRI and they agreed we should see the liver specialist. This didn’t happen until mid-September. The liver guy took a quick exam and said liver and wanted a better MRI. He did the new MRI and drew blood. He didn’t yet want to do a biopsy until he saw the new MRI and blood results. The blood results were all normal including AFP and other cancer markers, so he decided a biopsy was in order. On the 29th of September he told us it was adenocarcinoma and he referred us to the Siteman Cancer Center in St Louis.
On Monday, the oncologist confirmed cholangiocarcinoma with a 5cmx2cm tumor on the left lobe and 6 others ranging from 3-8mm throughout the rest of the liver.
On Tuesday my wife got a chest CT to check her lungs.
On Wednesday, she got a port and began gemzar/platinol chemo. The oncologist also informed us there was a 1.5 cm tumor in her lung.
All of her blood tests are still normal and the doc hopes to be able to shrink the left lobe tumor through 3 cycles of chemo then he will send us back to the liver doc (who is considered one of the best in St Louis) for possible resection.
All we can do now is fight this thing! Thanks for listening.
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