Search Results for 'gemcitabine cisplatin'

Hi Marina,

I’m so sorry to hear of your sister-in-law’s diagnosis, but welcome to our community.

I’m 110% with Mary that paperwork is a universal challenge. Our family have had to deal with a handful of incredibly frustrating hold-ups due to lost paperwork or mis-shuffled test results or whatever. My mom’s wife has been a hero on that front. She’s amazingly organized (way more than I could ever be!) and has notebooks with all the papers, business cards, files, bills, etc. She also records doctor’s appointments on her phone for us to go back to as needed. She’s had to do a lot of persistent calling of offices and double-checking about whether paperwork has arrived, etc.

My first thoughts on your family’s situation are as follows:

1) Waiting is a frustrating constant in our world, but 3 months seems out of hand for your family to still have no answers. I can’t tell from your post whether they have started any treatment yet or not. If not, then I think it is important for your sister to get started with something as soon as possible. IF, as her doctors are guessing, she has cholangiocarcinoma, then starting on the gemcitabine-cisplatin chemo would probably be a good place to start regardless of whatever other treatment they eventually settle on. Is there any way to push her current medical team about this?

2) I have heard great things about Dr. McGilvary but if you continue having a hard time reaching him, it might be worth looking to other options as well. Perhaps there are other referral centers in Canada which, although further away, might be more responsive for at least long-distance consultations?

Good luck with all of this and please do keep us updated as things go.

Hannah

Hi W,

Welcome to our community.  I hope you have found all of the resources for newly diagnosed patients on the Cholangiocarcinoma Foundation website.

I am sorry to learn of your father’s diagnosis.  It sounds like the current chemo regimen has shown some success although the new nodules in the lungs are concerning.  As Hannah notes, some of our patients with bone metastases have been offered radiation therapy, which can reduce pain and/or keep the met from growing.

Gemcitabine-cisplatin is the most typical first-line chemo.  Judging from what patients report on this board, xeloda as a second line option seems to be used when the patient has a tough time tolerating chemo, e.g., a very elderly patient.  It has the advantage of being in pill form.  Other second (or third) line chemos reported here for cholangiocarcinoma include the combos Folfiri and Folfox, which combine 5FU (5-fluorouracil, same chemo family as xeloda, but is infused rather than in pill form) and leucovorin with either irinotecan or oxaliplatin.  Leucovorin is also called folinic acid.  These chemo combos have more side effects than xeloda alone, but many patients find them tolerable.

CA19-9 is looked at to track the course of the cancer, but it is not always reliable.  It seems good news that your father’s marker has come down, but scans will provide more precise information.

Please let us know about your father’s results from his treatments.  I hope he is feeling well and has a good quality of life despite the cancer treatment.

Regards, Mary

Hi Laura,

The following is not medical advice, just an observation on what seems to be the case for many of our patients.

The typical first course of treatment for inoperable cholangiocarcinoma that has spread beyond its initial site is chemotherapy, usually a combo of two chemos – gemcitabine and cisplatin – which have proven effective in controlling this cancer.  Doctors may offer a different chemo option if the individual situation of the patient so warrants.  This is referred to as “systemic” treatment as it will attack cancer cells throughout the body.  If the cancer is only found in the liver, local therapies may be looked at. I can post info on such therapies if this is the case with your father.

At the moment, the cholangiocarcinoma treatments that may be indicated if treatable mutations are found in your father’s genomic profiling are mostly only available through clinical trials.  Many of the trials for these targeted treatments require that patients have first tried and failed a standard of care treatment such as the gem-cis to be eligible to join the trial.  So very often targeted treatments identified through the genomic testing are not the first option, but become options later on.

Both the targeted treatments and the new immunotherapy drugs are of great interest to cancer patients.  They offer hope of effective treatment with fewer side effects.  My own observation is that these new approaches to cancer treatment while promising, are at this moment still in development and in many cases, not yet fully figured out.  The science is evolving rapidly, but today for our cancer, the first round of treatment doctors typically suggest will likely be gem-cis or a similar chemo, or if cancer is only in the liver, one of the local treatments.  These treatments are effective with good quality of life for a good number of patients.  With genomic testing results in hand, patients under treatment then are in a position to scout next steps to be ready if and when the first treatment loses effectiveness.

There are exceptions to this, including a few trials designed to be patients’ first line of treatment and a few genomic mutations that are rare for cholangiocarcinoma but for which there are already FDA-approved treatments.  Your medical providers will help your father choose his best treatment path given his circumstances.

Genomic testing requires a sample from a biopsy.  If your father has had a biopsy, you can investigate if there is sufficient tissue for the testing.  If MDA will be the treatment facility, you could contact the department where he will be seen to ask if they want you to try and organize the testing now.

I was unsure from your message if your father plans to wait to start treatment until he is seen at MDA or if he is thinking about starting treatment with his local doctors.  I am asking about this because some of the major cancer centers will not take on new patients who have already started treatment in another facility.

I hope your father soon has a good treatment plan underway.  Please keep us posted and send any questions our way.

Regards, Mary

Hi Janice,

Hopefully those who either they or their loved ones will chip in soon to share their experiences of Gem Cis and what it all involved etc. I know that a ton of people, again either themselves of their loved ones have gone through that treatment and there are loads of posts here on the site detailing it all etc. These can be found here –

https://cholangiocarcinoma.org/db/search/gemcitabine+cisplatin/

That link above will take you to the individual postings by members here on the site regarding everything to do with Gem Cis. Hopefully you will get a load of info through that just now and here are some links for you about Gem Cis from the best and most reputable sites here in the UK.

https://www.macmillan.org.uk/information-and-support/treating/chemotherapy/drugs-and-combination-regimens/combination-chemotherapy/gemcitabine-and-cisplatin-gemcis.html

https://www.cancerresearchuk.org/about-cancer/cancer-in-general/treatment/cancer-drugs/drugs/gc-gemcis

https://www.macmillan.org.uk/information-and-support/treating/chemotherapy/drugs-and-combination-regimens/combination-chemotherapy/gemcitabine-and-cisplatin-gemcis.html

The above links have lots of other links within them that contain a lot more info on it too. I will keep my fingers crossed for your mum and wish her every success with the treatment. Please let us know how it all goes for her.

My best to you and your mum,

Gavin