Katemarykate
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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.
Kate
Gavin, thank you for the glossary-very helpful.
Mary, thank you, I will ask what the Oncologist is thinking next week when my husband goes for treatment. The Doctor did not give any details when we last met and we didn’t pursue further as we were asking about the Folfox regime I was a bit baffled as the genomic testing did not come up with anything identifiable and thought immunotherapy was off the table.
Update.
My husband has intrahepatic CCA. I am not sure that I knew that because I read “extra hepatic” on a discharge sheet months back and it stuck in my mind. More medical terminology that just gets jumbled when I am in panic mode; however, based on what I have read a rather critical mistake on my part from an expectation perspective.
The most recent scan showed “possible” growth in the tendril which is wrapped around the duodenum. My husband had a stent inserted in his duodenum a couple of months ago to keep it open. I asked the oncologist how the radiologist can measure the cancer versus the PSC and he said it was challenging; however, the tendril is definitely CCA not PSC. We seem to get more accuracy from the GI doc than radiology. Maybe because he is seeing the disease and the cancer through the ERCP procedures?
We are now 6 months into Gem/Cis and are advised that it will likely be drawing to a close with a transition to the Folfox regime. I would be grateful for insight on this regime from anyone who has undergone it after gem/cis failed ?
The oncologist said when that treatment fails he will try immunotherapy even though my husband did not get any results from the genomic testing. Curious if immunotherapy should be tried before Folfox and if anyone has a point of view on this?
Thank you
Kate
Ditto! Adding a big cheer along with everyone else.
My husband is 9 months in from a pretty horrendous diagnosis. PSC with CCA. Keep pushing and don’t accept non-answers. I asked the following questions:
1) How many CCA patients do you have, active and in the last five years?
2) Do you attend conferences with subject matter experts on this cancer?
3) What trials are coming up and what is your exposure to them?
4) Does your support team (GI doctor etc) have exposure and active patients with CCA.
And I keep asking questions. I ask on this site, I ask on other sites. AMMF.ORG.UK and the Macmillan Cancer site.
I wish you all the best and have learnt that everyone has a different journey with this cancer-so don’t let statistics or doom and gloom get you down.
Kate
Mary
Thank you-very helpful. In answer to your question-yes he had the foundation one testing and unfortunately had no matches. We were told there was a low probability of a match so were prepared for the results. What is interesting and I hadn’t thought about this was the ability to switch treatments back and forth. I will definitely ask the Oncologist about this.
Thank you so much
Kate
Update and Question (always questions)
My husband had metal stents put in so we have been infection free for three months (yippee and I don’t know why I am referring to him as we but it feels like we). We met the Oncologist yesterday who gave us the pet scan results after 4.5 months of gem/Cis and he said that the cancer has held to the same size. He said we should be pleased with this as most patients in my husband’s condition see growth of the tumor at this point. Additionally he mentioned that cisplatin causes hearing loss and neuropathy so my husband may have to switch to gemzar (spelling?)
My questions as follows:
1) Can patients keep the cancer at bay for a long period of time on Cis/Gem combo?
2) does Cisplatin inevitably cause the above? OR do we have people who don’t get the side effects?
3) how effective is gemzar (sp?)
4) are the b line therapies as effective as cisplatin-does anyone know of anyone who has time given to them on those therapies?
Thank you all for being so kind and always providing insights through experience.
Best
Kate
My husband had the plastic stents and it was awful-we could barely go three weeks without an infection and emergency ERCP’s. He has had two metal stents for nearly 3 months now with no infections (I don’t want to tempt fate) and this has really helped with maintaining weight etc. My 2 cents from our experience.
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.
Kind Regards
Kate
Has anyone heard of Ursodeoxycholic Acid being used to keep the stents infection free? I was on the UK site and the moderator asked if my husband had been prescribed the above? We are struggling with stent operations every 3-4 weeks because of infection. Curious if this acid makes a difference or not and if it is even cleared by the FDA here?
Catherine
Thank you. We ended up having a horrible weekend. My husband was fine last Thursday (the day of the chemo) all the way through Friday night when he got the worse stomach cramps of his life. He stayed up til 4 in the morning and finally fell asleep until 1pm. When he woke up the whites of his eyes were yellow so we had to go to the ER. They hydrated him, gave him IV antibiotics, admitted him for the night and did a stent replacement on Sunday morning. They said they can only put narrow gauge stents in because the PSC has caused so much damage and the narrow stents get clogged. I have no idea if they chemo did this or we were just unluckly. His bilibrubin went form .8 to 5 in the course of two days. Now we have to wait and see if they come down for round two this Thursday. Do you know if chemo makes the bilirubin count go up? It is such a challenge because the PSC has done such horrible damage to his bile ducts and between it and the cancer this seems like it is going to be a nightmare (well it already is a nightmare that I wouldn’t wish on my worst enemy).
Oh and he has a port (check) glad that is a good move-was also curious about the stomach cramps? Again not sure if that was the dreaded chemo or the infection? My husband is 55 and was really fit prior to the onslaught of this but he has lost a lot of weight too.
Kate
Mary,
Extremely helpful. Thank you very much for taking the time to share with me.
Kind Regards
Kate
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.
Kind Regards
Kate
