Hi Mary, thank you for your response my chemo is cisplatin and gemcitabine, the process is 6hours long as i always have sodium potassium give before and after (2hours each side) in between the Chemo, had my second chemo Wednesday gone i get to have a week off than back to 2 weeks consequetive than a week off, after the 9th treatment a CT scan will be given to see the results hopefully the chemo is working if not my only option is radiation. The effects having been too bad ive been writing down my temps, eats, meds, mouth washes etc etc i can feel a little lock jaw coming on, fatigue will settle in soon in a couple of days so when i have energy I get out there. The stent is ok im not taking any pain killers and was told by a nurse to clean the stent drink some coke, it works cos it makes me burp every 4 days i do this. In NZ there is only one dietian so im waiting on them to make contact with me to see what how I should be eating. My apetite is too good…. eating eating eating. but i ate something last night and had pain in the chest this morning hopefully it was the stent and not my liver. My tumor in the liver has grown 22milimeters since being diagnose oncologist said that not fast growing?!!??? Ok il take that. The think about Chemo is im now down to 53kg and it seems this chemo doesnt let me put on weight so hopefully with the week off I can. Sorry about the spelling mistakes too. I will go into the forums to see if others have problems with weight lost. Thanks Aroha
Rev. Wayne,
I agree that chemo is an opaque topic to wrap one’s head around.
Cisplatin is one of the chemos in the “platin” family – others are carboplatin and oxaliplatin.
Capecitabine is from a different family – it is the pill form of 5FU.
Gemcitabine is a third chemo. As another board member, Darragh, recently mentioned, a new chemo derived from gemcitabine – Acelarin – is being tested so in the future gem may have a “family” as well.
These chemos are all used for cholangiocarcinoma and have been tested in clinical trials both singly and in combinations. Gem-cis became considered a standard of care as a result of a large clinical trial study (ABC-02) that showed it to be more effective for CCA than gem alone.
Gem-cap is used in an adjuvant (post-surgery) protocol also including radiation that comes from a study called SWOG S0809 if anyone wants to Google it. In the study, the authors note that their design predates the British study on gem-cis. Capecitabine is used with radiation because it appears to sensitize cancer cells for better impact by the radiation. Gem has been used in this way as well, but it is more complicated since it requires infusion which is difficult to manage given radiation is every day.
Gem-cap has been looked at in a bunch of small studies and appears to produce similar results to gem-cis. What is missing is a large, randomized study.
Regards, Mary
Hi readers,
This report from Japan is really interesting. It shows via a randomized study with a sufficiently sized sample of patients that gemcitabine plus S-1 is not inferior (in terms of patient outcomes) to gemcitabine plus cisplatin. Gem-cis is the chemo workhorse combo for our cancer.
S-1 is an oral form of the chemotherapy drug 5-FU. S-1 is not approved for use in the United States but is used in Asian and European countries.
In the US, a different oral form of 5-FU is used – capecitabine. There has not yet been a similar head-to-head comparison study between gem-cis and gem-cap, but there have been a few small or nonrandomized studies showing patient outcomes for gem-cap that are similar to the big British study establishing gem-cis as the standard of care for CCA.
Why is this important? Gem-cap has milder side effects than gem-cis or in chemo-speak, it is “well-tolerated.”
S-1 and capecitabine are two different formulations, so this new study does not really tell us anything specifically about gem-cap. But hopefully it will spur our researchers to look into whether gem-cap can someday (soon) be considered as standard of care alongside gem-cis.
Regards, Mary
Hello Family38! Welcome to our discussion board! I am sorry that you have had to find us, but am glad that you are here.
Here is some information that you may find useful:
https://cholangiocarcinoma.org/newly-dx/
https://cholangiocarcinoma.org/the-disease/treatment-options/
http://www.targetedonc.com/publications/targeted-therapy-news/2016/july-2016/cholangiocarcinoma-new-targeted-therapies-on-the-horizon
https://cholangiocarcinoma.org/wp-content/uploads/2017/08/CCA-Mutations.pdf
http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0115383
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4409969/
With a diagnosis of Cholangiocarcinoma, a team approach is absolutely necessary. Wherever care is received (and yes, seeking multiple opinions is warranted), there should be a care team; this may include a medical oncologist, surgical oncologist, radiation oncologist, gastroenterologists, interventional radiologists, social workers to help with insurance claims/etc., palliative care practitioners to manage distressing symptoms, nurse navigators to assist with the plan of care, etc.
Additionally, seeking care at a major center who sees cholangio patients routinely is extremely important. I believe I see that you tagged Sunnybrook for your post. This is in Canada, correct? Have you sought a visit with Princess Margaret?
I did read another one of your posts re: Paclitaxel + Gemzar/Cisplatin. This drug combination is considered “chemotherapy” as these drugs interfere with the functioning of the cancer cells (i.e. interrupting cellular mitosis). Here is an article you might find helpful:
https://www.researchgate.net/publication/275949617_Systemic_therapy_of_cholangiocarcinoma_From_chemotherapy_to_targeted_therapies
The standard of care currently is a combination of the drugs Gemcitabine (Gemzar), and Cisplatin. This regimen may allow for the tumor to shrink enough to where it is deemed operable. However, genetic testing of the tumor is important as well as this will allow the physicians to potentially match current drugs or even clinical trial drugs to the tumor. There are many posts on this board (and current members) who are well versed in tumor sequencing and will be so helpful as you seek information to help your father.
I hope this information has helped you a bit!
-Karen
Member, Nursing Advisory Board, The Cholangiocarcinoma Foundation
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This reply was modified 6 years, 10 months ago by karend.
Hello all,
My father (aged 57) was recently diagnosed with cholangiocarcinoma and they are not sure if it is operable. We have been offered a clinical trial regarding nab-paclitaxel, gemcitabine, and cisplatin. Have any of you had any experiences using this cocktail? Or know any information regarding it? We would love to know your thoughts/opinions before we decide to move forward.
Hi Everyone,
First off, let me say that it is absolutely heartwarming the amount of support I have seen in this community/forum. All of us in some way, shape, or form have been touched by this cancer whether it is us or our loved ones. My name is Cameron (aged 22), and my father Alan (aged 57) was diagnosed with Cholangiocarcinoma a month ago (December 6th, 2017).
Our story begins with my father’s urine turning very dark colored and presenting non-painful jaundice. Our family doctor referred us to North York General Hospital (Toronto, Ontario. CA) for a CT and MRI scan early December, and was diagnosed with a Klatskin tumor (Cholangiocarcinoma). We were referred to Sunnybrook Odette Cancer Centre on December 11th and are still awaiting a game plan to beat this thing. My father is extremely healthy for his age and has no prior medical issues/incidents. The doctors told us they aren’t sure why or how this cancer develops, “it sort of just happens”. Initially, our oncologist told us that my father’s case is locally advanced non-resectable. This is due to the tumor being wrapped around an important hepatic artery, and in a very tough spot under the liver which makes operating very dangerous. Obviously, this is not what we want to hear, and hope that surgery is an option. We have our final follow up appointment on January 15th, where we will be given a number of options and a game plan.
We were additionally offered two chemo options (if surgery is not an option): 1. Gemcitabine and Cisplatin which I understand is now the standard treatment for non-resectable bile duct cancers. 2. a clinical trial phase 2 of nab-paclitaxel, gemcitabine, and cisplatin. I have done a lot of research on this new clinical trial and have read some promising results. I hope that if any of you/your loved ones are battling this cancer – they are offered similar treatment options. My heart goes out to all of those battling and affected by this cancer. I hope that together, we can all overcome this battle. My family is ready to go to war on this thing, bring it on!!!
Notable:
Be sure to do your research, my girlfriend is in the medical field and helped me research alternative treatments/methods like liver transplant which I brought up during one of our follow up appointments. The option seemed to spark some interest in the doctors and they are discussing it further currently. I have also done some research on new successful radiation methods such as branchytherapy, keytruda (pembrolizumab), photodynamic therapy, immunotherapy, and IPT Insulin Potentiation Therapy.
My questions:
Has anyone used the addition nab-paclitaxel? Has it worked? Have you seen any positive results?
How do you approach getting a second/third opinion from other hospitals, do you all recommend doing this?
Hi Mark,
Thanks for your update.
You asked about the mechanics of the board. What you post is seen by all readers. If you want to reach out to a specific board member, there is a private message function which you can access by clicking on the “send a message” button under the board member’s user name on the left-hand side of the message.
There is a huge variety of experiences with this cancer, so by posting so all can see your message, it is more likely someone who has experience with your area of concern will see and can answer.
Gemcitabine with cisplatin is a common first-line treatment. The biopsy and genomic testing your doctors are recommending is certainly the wave of the future now that precision medicine is becoming a mantra for cancer treatment. If you are concerned by the high cost of potential off-label medications, please be aware that some (not all) pharmaceutical companies offer financial assistance to qualifying patients, so that is worth checking out on the company websites.
Whether to have a second opinion is up to you. There are merits to this with a complex cancer. Reflecting on postings on this board, some examples of reasons for pursuing a second opinion have been (1) to be absolutely certain whether or not surgery is an option and (2) when needing to choose among treatment options, e.g., if there are multiple clinical trial options.
Your family members are spot-on correct in my humble view in encouraging that you take a strong role as self-advocate. I felt like having this rare cancer sent me back to school, as I had to acquire a lot of information to look into treatment options, and to deal with medical professionals I encountered who have not seen many patients with my cancer.
I hope you are still considering attending the Cholangiocarcinoma Foundation annual conference at the end of the month.
Take care, regards, Mary
Translating the ABC-02 trial into daily practice: outcome of palliative treatment in patients with unresectable biliary tract cancer treated with gemcitabine and cisplatin.
“CONCLUSION:
First-line gemcitabine and cisplatin is an effective and safe treatment for patients with unresectable BTC who do not meet the eligibility criteria for the ABC-02 trial. Median OS, PFS and treatment side effects were comparable between the patients who received chemotherapy (group I vs. group II).”
https://www.ncbi.nlm.nih.gov/pubmed/29265948
Thank you for your replies. I live in New Zealand, the chemo treatment offered to me is “cisplatin and gemcitabine” there may be some radiation treatment but that depends on my condition. Im now in two minds about doing chemo after reading your replies. Been googling too much and can see some cancers can be cured without using conventional treatment.
Prognostic Implication of Inflammation-based Prognostic Scores in Patients with Intrahepatic Cholangiocarcinoma Treated with First-line Gemcitabine plus Cisplatin.
https://www.ncbi.nlm.nih.gov/pubmed/29192354
Posted this link on the surgery board but wanted to post a link to this case report under the Chemo board as well.
https://www.ncbi.nlm.nih.gov/pubmed/29164423
Successful radical surgical resection of initially unresectable intrahepatic cholangiocarcinoma by downsizing chemotherapy with gemcitabine plus cisplatin: a case report.
https://www.ncbi.nlm.nih.gov/pubmed/29164423
Copanlisib: First Global Approval.
https://www.ncbi.nlm.nih.gov/pubmed/29127587
Copanlisib –
This trial is currently ongoing too.
Copanlisib (BAY 80-6946) in Combination With Gemcitabine and Cisplatin in Advanced Cholangiocarcinoma
https://clinicaltrials.gov/ct2/show/NCT02631590
Gavin
Hi Wmeisel,
Thanks for letting us all know about your starting the chemo at Mayo next week. The regime that you mention, Gem/Cis is very common for starting off with for CC patients and I know that there are a ton of posts here on the site from the members who either they or their loved one has gone through that combo. The “search forum” function at the side of the discussion board home page will throw up all of the discussions on these chemos. I did a quick search for you and it threw up this –
https://cholangiocarcinoma.org/db/search/gemcitabine+cisplatin/
You can modify your search to narrow it down etc to look for specific topics around Gem Cis too if you want. But I do know that there are a lot of postings on the site about that combo. I can’t offer any personal experiences as my dad never had chemo but hopefully others will be along soon to share their own experiences with you. Here’s another good link for you as well.
https://www.macmillan.org.uk/cancerinformation/cancertreatment/treatmenttypes/chemotherapy/combinationregimen/gemcitabinecisplatin.aspx
Please let us know how things go and I will keep my fingers crossed for you.
Best wishes,
Gavin
Hi Community,
Sorry to go so deep in the weeds of chemo with not much of a hello or how was your day.
I head to the Mayo Clinic next week and will meet with an oncologist for the first time. It looks like they are considering cisplatin with gemcitabine.. As anyone had the cocktail before. Any thoughts on how it worked, side effects and how long? Effectiveness? I had surgery on September and I think it went as well as could be expected
Thanks