October 20, 2018 at 10:12 am #97681gavinModerator
I am so very sorry indeed to hear of the passing of your husband Ian. Please accept my sincerest condolences. I wish that there was something that I could say that would help ease the pain that you feel right now but I know that there are no words that will help. You did everything that you could to help him through this and I am glad that his last moments were spend at home with his family around him.
Thank you as well for your most generous offer of donations to the Foundation instead of friends and family flowers, thank you very much. Please know that we are all here for you and my thoughts right now are with you and your family.
GavinOctober 18, 2018 at 5:31 pm #97672bglassModerator
I am so sorry to hear this sad news about your husband Ian’s passing. Please accept my prayers and condolences.
It was a blessing that his last days were spent peacefully at home surrounded by loved ones. Please take good care of yourself in the difficult days and weeks ahead coping with this loss. Please also take comfort in how your steadfast support to Ian as he battled cancer made the road much easier for him.
I hope you will stay connected with our community.
Take care, regards, MaryOctober 18, 2018 at 9:48 am #97666bonParticipant
So sorry to hear about your husband Ian. Hopefully he found peace at the end and was surrounded by love (sounds like he was!).
I know how terrible this diagnosis is – my husband was diagnosed with CC in March of 2017 and it’s been an up and down battle ever since, about equal I’d say. He did the Gem/Cis routine – although several doctors told us this doesn’t work well on this type of cancer – he was opened up for a resect, and then closed back up and we were told by the surgeon it couldn’t be done. That was a tough blow to take. He is also not a candidate for a liver transplant.
The Gem/Cis seemed to shink the tumor and it’s been stable ever since – last dose of chemo was the 1st of January, and he says he won’t do it again. Scan show stability, for which we are thankful. Every single day is a blessing. Husband just had another ERCP two weeks ago and the surgeon told me the cancer is either spreading into the liver or his stent was backed up. I sat on pins and needles until the GI doctor came out to speak to me, he said husband did well – I asked if there were anything else I should know (doctor is a complete straight shooter) – and he said “no.” Husband appears to be recovering but is tired. His urine and eyes have cleared up so I take this as a good sign.
We know we are possibly in a losing situation here but there is always hope and each case is completely different from the next – we have double insurance so we have seen a lot of doctors, had a lot of consults and it’s ranged from positive to dismal.
I hope you find peace in all this. I wish you the best.
BonOctober 18, 2018 at 8:59 am #97663
Update: My husband, his name is Ian died a week ago. His cancer was progressing and the oncologist switched him to Folfox. After 3 infusions he got sepsis and was hospitalized. An ERCP revealed the cancer had spread in the liver. He made the decision to come home and refused further treatment. He died at home with the people who love him dearly. There aren’t words that adequately describe my sense of loss. I have asked my friends instead of flowers to donate to this organization. Thank you for answering my questions and give me a sense of community over the last year.
KateJanuary 12, 2018 at 9:35 am #96438positivityParticipant
I feel for you as all do on this forum. We start with the shock as most of us have not heard of this cancer until there is a diagnosis, and there are endless surprises. It seems most people with CC have similar symptoms yet unique responses to treatment and other underlying health issues which add to the challenge. I felt the frustration many times as the lack of treatment options and in my case had to accept, as it was difficult for my mom’s case. It is so individual as no one knows what can work for one person may or may not for another.
We could not do chemo as it would have been harmful for my mom since she had a simultaneous condition of chronic anemia similar to what people experience when under chemo, so we made the smart choice on not to do it. I hit a road block many times and as her condition has worsened realized I still made a smart choice as odd as it sounds. I understand the frustration of multiple stent exchanges through ERCPs also as I got to the point in thinking this must help control bilirubin levels, but at the same time harming the bile ducts and creating more disruption in the area. I had a tough time tackling that one, so it’s interesting when I hear patients who don’t need stents as most CC patients do, demonstrating how unique each CC patient is. Also, we did get different opinions over the course of a year from doctors, some saying chemo won’t help at all and some pushing it. I hope these new clinical trials will make a difference in treatment options for everyone. My mom unfortunately won’t be part of it, but anyone who is afflicted in the future. We need those bright scientists to keep the testing going.January 11, 2018 at 5:04 pm #96430herculesModerator
Kate, I am sorry your doctor does not have a more positive outlook, there is a woman I met at the conference in Salt Lake last year and her case was similar to your husbands,in short she had a very positive response to Gem/Cis chemo, not that all do please know it can work more than just temporarily slowing the advance of cc. Her cancer , when viewed by a follow up scan, had shrunk up and responded so well that her doctor decided to do a resection. When he opened her up all of her cancer was necrotic or dead. The surgeon said he never had seen anything like it. She had PSC as well and approached me for information on how I have managed my PSC with no further complications. So I have seen her since, she was operated on in the same hospital I was which is just 15 miles from my home, she stopped by after a follow up, and she is doing very well, her name is Christy and her story is on the facebook group for the cholangiocarcinoma foundation, and she is doing very well as I am, twelve years past diagnosis and with PSC, so don’t lose all hope, it is possible for his case to go well, and I hope it does for you all. My best, PatJanuary 11, 2018 at 1:32 pm #96420
Update: Here we are in January. Looking back at how uninitiated I was -I couldn’t even spell the name of the stinking cancer.
We have had a lot of ups and downs. Five ERPs culminating in metal stent insertion. Chemo has been bumpy with stops and starts as a result of white cell counts and platelets being out of whack (My cancer language is expanding and my spelling of the odious counts and markers too!).
We are now told that the Gem/Cis combination will hold the cancer for a while and then the cancer will start to grow again. Just trying to keep upbeat but struggling with the lack of options. We talked today about immunotherapy but the Oncologist was “ish” about it. I am now resigned to the fact that what my husband has is not curable due to his PSC and the size of the tumor which is very large but would like for him to have a week or two where he doesn’t feel rotten and doesn’t compromise the time he has left. Any insight would be most welcome.
KateOctober 12, 2017 at 4:44 pm #95847spokanemomParticipant
Welcome Kate! I am so glad you found this site and I hope you are able to search for answers. The forum does have a search function, on the right of the main forum page (with the list of all the forums), and maybe you can use that to search for posts with PSC mentioned.
VictoriaOctober 11, 2017 at 10:56 am #95829
Thank you! I am delighted I found this site. There are so many unknowns and currently trying to take each day as it comes and forcing ourselves not project out further as it is overwhelming.
The oncologist said there is only the “standard playbook” for chemo at this stage and we will have to pay for molecular therapy testing which will be of use if the chemo does not shrink the tumor. Is this accurate?
I am still in the dark about PSC and its effect with the cancer? For example, because the bile ducts are so scarred from the PSC does it render the chemo less effective? The Oncologist told us not to project into the future and that he wouldn’t be doing this chemo if he didn’t think it may do something but in the same breath he said 75% of patients don’t see shrinkage in the tumor? So many questions and not a ton of clarity right now.
KateOctober 10, 2017 at 11:11 pm #95827debnorcalModerator
I’m sorry your husband has this diagnosis, but glad you found us. Here you can find information on latest treatments, medical providers with expertise in CC, and many other topics.
debbieOctober 10, 2017 at 4:25 pm #95823hopeseekerParticipant
Katemarykate, so very sorry for your husbands recent diagnosis. There is a lot of great support, help, and advice found here and many amazing stories of survivors!! You can ask questions and just vent if you need to and the support and help is here.
HopeseekerOctober 10, 2017 at 4:09 pm #95822
Hello my name is Kate. My husband has just been diagnosed with PSC and the bile duct cancer. We are still reeling in shock as my husband thought he had a stomach virus two months ago and fast forward two stent surgeries and yesterday we found out the cancer is throughout the bile duct (growing on top of them not in them-don’t remember the technical terms) with a tendril wrapping around the stomach. He is not a candidate for resection, surgery or a liver transplant. We start chemo next week to attempt to contain and shrink the cancerk. Hoping to get advice from people who are on this site.
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