May 16, 2021 at 9:45 pm #101063bglassModerator
Welcome to our community. I am sorry to hear of your husband’s diagnosis, however, and very much hope his June scans bring reassuring news.
Please take a look at the many resources for patients and caregivers on the Cholangiocarcinoma Foundation’s website.
My impression is there are very good doctors and medical facilities in Canada, but as with care in the U.S., it is important to be sure your medical providers have expertise in our rare cancer. The results of your husband’s molecular profiling may open the door to additional treatment options if the gem-cis starts losing effectiveness at a future point. Please be sure to push your husband’s doctors to find good remedies for any chemo side effects he is feeling. I remember when I was on chemo, the first nausea medication did not work, but the second one prescribes was better. There is a lot of advice posted on the board about how to address appetite and digestive issues.
Please stay in touch, and let us know how your husband is doing.
Take care, regards, MaryMay 15, 2021 at 12:50 am #101058HeswParticipant
Hi- PROBABLY NOT WHAT YOU WANT TO HEAR COZ YOUR SCARED
So sorry to hear about your husbands diagnosis and that it is unoperable.
I am in the same boat. I was diagnosed 7 months ago: Such a shock because I’m quite sporty.
It took me 3/4 months just to process the emotions. Disbelief,non acceptance, anger, anxiety, guilt, blame, self blame, confusion, relationship changes etc. understanding the hospital / treatment process……Now although I obviously DO NOT like it. I am dealing with it better in so far as one can.
Early on it was stressed to me by medics, psychologists, fellow sufferers that part of the key is to be as calm as possible at all times. I was like . What.? How? Are you crazy?This is because the body apparently accepts the drugs etc better if it is in a calm state. Makes sense.
Obviously problems crop up because that’s life.But now I accept no negativity in my life / people. I live for today and try to enjoy moment.
My first chemo didn’t work . I suspect maybe partly because my head was a mess but now that I am calmer I am getting better results. I think it helps anyway. I focus on what’s important : my husband, dog and proper friends.
This doesn’t mean I don’t have bad days ( that’s impossible) or never feel sad and scared but I try to lead as normal life as I can even though there are a fair number of things I can’t do anymore.
I hope your husband takes a positive proactive attitude although it’s not easy.
All the best HMay 14, 2021 at 8:08 pm #101056ShortcanuckParticipant
Greetings from downtown Ottawa.
It’s not often that I see someone else from Ottawa. I’m glad you found this group, but I’m very sorry about your husband’s diagnosis. My husband was diagnosed in October 2017. If you feel you want to talk to someone personally, please don’t hesitate to contact me directly. I think you can send me a direct message. We could then, if you’re comfortable, chat or call the old fashioned way or virtually.
My name is Lucile and my profile name is ShortCanuck. Hang in there.
May 14, 2021 at 8:59 am #101055NorthBirdParticipant
- This reply was modified 1 month ago by Shortcanuck.
Hi everyone. My husband was diagnosed with inoperable cholangiocarcinoma at the beginning of March (second opinion said the same). He started gem/cis in April and they’ll be doing a scan at the beginning of June to see what effect it has had. We’re waiting for molecular profiling results. Digestion issues have been the main chemo side effect and he’s lost a lot of weight.
Thanks everyone for sharing all of your experiences … it’s been so helpful to feel not quite so alone with this rare disease.
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