Survival…Please tell us your latest milestone
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Hi everyone,
Thanks again to Darragh for reporting on his treatment with the trial drug Acelarin.
Here is an abstract posted by ASCO that alerts us to an upcoming Acelarin Phase III trial for cholangiocarcinoma that will involve centers in North America, Europe, and Asia/Pacific.
http://abstracts.asco.org/239/AbstView_239_267505.html
There is also an abstract reporting results from an earlier trial that had a small number of cholangiocarcinoma patients:
http://abstracts.asco.org/239/AbstView_239_264039.html
Gavin and I will keep an eye out for additional information as it comes available.
Regards, Mary
Hi Darragh,
It is great to hear from you and that you are doing well after three years.
Acelarin is a promising new drug in development, with potential for cholangiocarcinoma and other cancers. My understanding is it is still in testing in the U.K. (home of a lot of cutting edge cholangiocarcinoma research). Did you receive Acelarin as part of a clinical trial?
Here is a link to an article on Acelarin.
http://www.nucana.com/downloads/NuCana21October2018.pdf
I had read about Acelarin and had the opportunity at the last Cholangiocarcinoma Foundation Conference to speak to several informed folks from U.K. about it. This is definitely something to keep our eyes on. I just looked at clinical trials.gov and there does not yet seem to be a trial in the U.S. for patients with cholangiocarcinoma.
Please keep us posted on how you are doing, and fingers crossed your cancer continues to be well controlled.
Take care, regards, Mary
Hi, I am now 3 years post diagnosis of stage 4 cholangiocarcinoma (peritoneal and bowel mets). I’ve had
My most recent chemotherapy was Acelarin,which is a gemcitabine analogue being developed by a company called NuCana . I was travelling from Ireland to Manchester to receive this on a weekly basis.
It certainly seems to be effective at keeping the disease at bay, although I did struggle with side-effects of nausea in particular. They subsequently brought down the dose and I was tolerating it much better.
The acelarin has been on hold for the past 9 weeks as I saw a surgeon in Dublin who performed an ileostomy to relieve my longstanding subacute obstructed bowel. Although I am now unobstructed I still have issues with vomiting, which is being attributed to a mechanical upper GI problem (I don’t think anyone really knows why I’m still vomiting!). I have been receiving TPN (feeding through PICC line) since November and thats been keeping me going.
I hope to restart the Acelarin soon once my symptoms improve somewhat. I would recommend Acelarin as a treatment for those who have exhausted other chemotherapies. It must be said that one of its selling points is that it should be well tolerated, and I did struggle with side-effects in the initial weeks.
I haven’t been able to get enough viable tissue to have a molecular analysis performed thus far, although another sample has been sent to Foundation One recently so hopefully this may shine a light.
Hope this may be of help to someone, Darragh
another year has rolled by, the resection is still working, I went back to see my oncologist to see about getting a copy of my surgical report and my pathology report. I also asked for a recommendation for a medical cannabis card, which he said he could not. My surgical report was a more detailed report written by dr. Mackey and dictated by dr. Henderson. I found it interesting that after removing the gallbladder and resected the duct, they filled the duct with liquid from the short piece remaining at the ‘Y’ cut and pressurized it to check for a leak, which there was, they redid the resection point of the duct, and upon pressure test 2 it held, it is good to have a great team doing the work while you are asleep. I thought the pressure test notation was pretty cool, like something I would do in a household plumbing job (lol) and I am thankful for the curative surgery I was given twelve years ago yesterday. I hope more successful surgeries come along, Pat
Hi everyone, I am pleased to share today is twelve years past discovery of a tumor which was discovered in my left hepatic duct which was later determined to be cholangiocarcinoma. No treatment at all since a january of 06′ surgery. My tumor was found early and was slow growing, my doctors were excellent and I was just 49 years old at that time, all of which helped with a positive outcome. My pathology report noted Primary sclerosing cholangitis which is present but controlled with an anti-inflammitory drug (Meloxicam) one pill daily and that is it for my long term treatment. I am going to see my oncologist for the first time in 5 years to ask for guidance on long term ways to monitor and watch for a return of the cancer. I am hoping for more than blood draws as a monitor, perhaps an occasional ultra sound as that is the type of image that found the first tumor. I have done well until now but I really don’t believe we are ever really out of the woods, the trees are just farther apart. I am going to celebrate a little today…..Yay….Pat
Genevieve,
That is wonderful news! I am so happy for you both! So hopeful to so many! Thank you!
MelindaHi Genevieve,
Thanks so much for sharing this great news with us all, superb!! As Darla says, it gives great hope to so many people not only here on the site but the many many “lurkers” that read the site but don’t join or post. So thanks loads for sharing this with everyone!
My best to you and your husband,
Gavin
Dear Genevieve,
That is awesome. Thanks for sharing. This is the sort of thing we like to hear more of. It gives hope to others who are struggling with this disease. I too hope that this continues. My best to both of you. Take care.
Love & Hugs,
DarlaGenevieve,
Thank you for sharing this wonderful news. Your husband has been through a lot – he sounds like a “real trooper”. I hope that he enjoys continued good health!!
Debbie
Hello,
Just writing that it is over 5.5 years since my husband’s first resection for multi-focal ICC.
He’s had two further resections for recurrences, two lots of adjuvant chemo, and a microwave ablation. He has three-monthly scans, alternating between CT and MRI, and so far has been clear since the microwave ablation in November 2015.Best wishes,
Genevieve
Thank you so much for sharing. It takes courage, and hopefully more people and caretakers get on this site.
After experiencing this difficult time in my life, I consider every month that passes as a success. I had to find the strength to help my mom and others in the process. Now 6 months later, I am so glad to be part of this community and I also took the step to be courageous during a challenging time.
I am extremely grateful to celebrate 6 months since diagnosis, which in reality after learning about this condition and backtracking into medical records, my mom has actually had it for 3 years. This is with the possibility of it getting worse or becoming more symptomatic over time. We made difficult decisions, and I had to accept my decision with whatever outcome and keeping positive. You can imagine how hard that would be. I say “we” as when you are an advocate or close family member you put yourself through the experience as if it is “you”.
Life is unpredictable, but I will always know in my heart and mind, that I stepped up and helped as much as possible and moved forward wisely with love and kindness.
I am so glad to inform you that I was selected for the Phase 2 clinical trial of Incyte Corp experimental drug INCB054828 for CC with the FGFR gene alteration. For details, see:
https://clinicaltrials.gov/ct2/show/NCT02924376I have taken the drug (just a pill) for the last 5 weeks. I have experienced absolutely NO side effects (which is such a contrast from my experience with the chemo I have had a few months ago with horrible side effects and weight loss). Instead I was pleasantly surprised to feel significantly positive effects of increased appetite, increased energy and the mouth taste (that had become bad after the chemos) returned to normal. Better appetite and better taste has resulted in weight gain (I have been a very slim guy all my life, then I started losing weight and appetite a couple of years ago, then suffered drastic loss of weight after taking chemo). so weight gain was such a welcome surprise.
After 5 weeks of treatment I went for a CT scan. It was compared to the scan at the start of the study. I was thrilled to find that my tumor had shrunk (from 7cm x 6,7 cm) to 5.9 cm x 5.2 cm.
That’s a huge reduction in 5 weeks, …with NO side effects.
I feel so positive about this drug that I hope it will fully cure my disease at this rate.
Actually, I felt from day 1 that this drug was restoring my GI tract to the normal state.I am writing to let other CC patients know of this powerful drug, how successful result I have experienced of this experimental drug that has started in phase 2 in January this year (2017) and I participated in the trial starting in April. Any one with CC with FGFR gene alteration – please find the nearest trial site, it can be your life saver. Its a multi-site trial at 36 locations across USA. still recruiting new patients.
brianbarbaradoyle could you please explain your treatment process in details?
which drugs are used ?
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