Search Results for 'gemcitabine cisplatin'
-
Search Results
-
Hi everyone,
I tried to sign up on the forums last year but didn’t have success. Had hoped to be able to turn my back on Cholangiocarcinoma at the end of 2020 but here I am.
I’m a 39 year old man in Australia and my father has CCA at age 69. He was first diagnosed last July at age 68 by sheer fluke. He has previously had an enlarged (benign) prostate and therefore has regular tests. Our family GP actually picked up that dad’s liver enzymes were elevated and ordered further exploration.
The family didn’t get too worried until we heard the dreaded C word for the first time and then googled it. What nightmares are made of, right?
When further exploration was done, it was found that tumours were in the left side of the liver, with some lymph node activity. He was absolutely borderline with regard to having a resection as an option. He responded famously to chemotherapy (apart from his veins in his arm regularly collapsing and hurting) which was the commonly prescribed gemcitabine and cisplatin (3 weeks on, 2 weeks off from memory).
In November 2020 he was given the go ahead for a resection. Around 75% of his liver was removed and 12 lymph nodes. The surgeon could barely find evidence of the cancer in his liver (still performed the op as planned), and cancer was detected in one lymph node. He had a few rounds of chemo afterward to be on the safe side. No complications from surgery etc.
Christmas and the first half of 2021 was fantastic, given we had received the best possible news that there was no evidence of cancer, despite the qualification that CCA is notorious for coming back.
Fast forward to one year almost to the week, after his first diagnosis, and dad has elevated liver enzymes again.
Exploration was undertaken and a stricture was found in the bile duct. The pathology company came back with a “no cancer – scar tissue” result – the surgeon disagreed and ordered another pathologist to investigate – who came back and said microscopic evidence of cancer was in the scar tissue (very concerning of the pathologist to mess that up – wonder how often that happens).
Anyway a stent was inserted into the bile duct during that procedure, and over the last few weeks the surgeons and oncologists have been meeting.
This week, after deliberation, they have undertaken RFA as the cancer appeared to be under 3cm in length, and chemo will follow. Unfortunately as many medical specialists have a tendency to do, they delivered matter of fact news to him to say the RFA went as planned but is no way a cure, and that he will likely need it every 3 months and chemo regularly for the rest of his life. “Palliative care” was mentioned, which has really shaken dad, my mum (69yo), sister (41yo) and me. This diagnosis is being referred to as synchronous not recurrent.
Reports I have read, show that RFA has positive outcomes, I’ll hang onto that for now.
We aren’t going to give up hope, and I’ll keep you updated. We just hope he responds well to the chemo again, and if we had a few more years with him, and he has them with us and his 4 grandchildren with a decent quality of life, who knows what drugs may come out etc.
I’ve raised Keytruda with his oncologist a few times and it’s been considered but dismissed. Will keep looking into other options and trials. I do wonder about it still.
The worst part is that my dad looks 50, is otherwise extremely fit and healthy, and has a really wonderful family and life. It’s just not fair is it.
Anyway, of potential interest to others – we have always been told that CCA is not hereditary however, my dad’s first cousin was battling CCA for 3 years, unfortunately losing it earlier this year (which also makes it hard for dad to be optimistic). Dad and his cousin have lived in different states in Australia for their whole lives, which rules out anything environmental. There has to be a genetic link. This cancer is so rare, it would be an amazing coincidence if not.
Dad and other family members have the BRCA2 gene mutation, which dramatically increases the risk of cancers mainly in women (breast, ovarian etc.) but I do wonder if years from now we will see a common link between BRCA2 and CCA. Our family is currently undergoing genetic testing to determine who else has the faulty gene. Im waiting on the results myself which is nerve wracking.
I guess we all just have to be thankful every day we wake up. The thing which tears me apart is seeing how flat my mum and dad are. I am a problem solver and whenever there is an issue in my family, I like to find a solution. This situation is one which I can’t let defeat me, but keeping hopes and spirits up for others is a difficult thing to do when I am mourning and fearful of losing my dad myself, and my mum losing her soulmate.
I’m hoping this forum will give me a bit of a place to talk.
Anyway, that’s me and that’s our predicament. Very familiar for many of you I am sure.
Keep fighting,
Nick x
In reply to: My sister recently diagnosed
Hi Dolan11661,
Thank you for posting — but I am very sorry to hear about your sister’s diagnosis which brought you to us.
Generally the initial treatment for advanced cholangiocarcinoma is chemotherapy (typically gemcitabine and cisplatin). If a second-line treatment becomes necessary, it may involve a different chemotherapy or a targeted treatment if an appropriate one is available. So it would be worthwhile to ask about genomic profiling with your sister’s doctor.
In terms of medical approaches to ask about, you may wish to see if the cancer center where she is being treated has palliative care resources to offer. Palliative care is directed toward relieving pain and any side effects from treatment.
Be sure and ask your sister what she wants to do, how she views different care options available. Encourage her to speak up about any pain or discomfort she is feeling. Your sister must feel much comfort in knowing you are looking out for her.
I hope the appointment on Thursday goes well and brings some answers. Please send any questions you or your sister have our way. Our community’s wishes and prayers are with you and your family.
Regards, Mary
Hi all,
Please see the below thread and I just wanted to put a link to this in the chemo thread as well.
Gemcitabine, Cisplatin, and nab-Paclitaxel for the Treatment of Advanced Biliary
Thanks all,
Gavin
Gemcitabine, Cisplatin, and nab-Paclitaxel for the Treatment of Advanced Biliary Tract CancersA Phase 2 Clinical Trial
Thanks to JAMA Network for this piece.
Gavin
Hi Gli50,
Welcome to our community. I am sorry to hear about your wife’s diagnosis, and hope she has been able to identify medical providers who have experience with our rare cancer.
Chiming into the good advice you have heard from other board members, our patients are encouraged to look into genomic profiling of their cancer. We have had a few patients who have reported doing well with pembrolizumab, but they tended to have a specific mutation that responds to this treatment. If your wife knows the genomic profile of her cancer, this information can help in making treatment decisions.
Gemcitabine plus cisplatin is the most typical first line chemo prescribed for unresectable patients. It has a decent track record for stabilizing the cancer for many patients. A lot of patients and their caregivers who have posted on this board have been treated with gem-cis, so if you search the board for the chemo ñames (or any other treatment name) you can find stories of patient experiences with that treatment.
Our colleague Gavin posts medical articles about cholangiocarcinoma treatment advances, which patients can then ask their doctors about. One treatment that has been added to gem-cis with promising early results is abraxane. This is an example of a treatment option your wife may wish to ask her medical providers about, to see if it something potentially beneficial. Here is an article Gavin posted on this combo treatment. https://www.curetoday.com/view/addition-of-abraxane-to-standard-of-care-may-prolong-survival-for-advanced-biliary-cancers
The Cholangiocarcinoma Foundation website has many resources for newly diagnosed patients and their families.
Please stay in touch and send any questions our way. Because our cancer is rare, it can be hard to find information. The patient and caregiver groups on social media are additional ways to find information and support.
Take care, regards, Mary
Hi everyone,
I am new to this website and hopefully can learn from you.
My wife was diagnosed with ICC last month in Australia and doctor told us it’s unresectable. It was like a nightmare as she is only 39 years old and our kid is in kindergarten. Doctor advised my wife to join a clinical trial (Pembrolizumab Plus Gemcitabine/Cisplatin Versus Placebo Plus Gemcitabine/Cisplatin for First-Line Advanced and/or Unresectable Biliary Tract Carcinoma). Not sure if this is the best option for us? My wife has 50% chance of being treated with Pembrolizumab. Has someone been treated with Pembrolizumab and how did it work ? My wife needs to do some tests before she can start the treatment which is probably the end of this month.
Thanks for this website. I find it very useful.
Combination of HAI-FUDR and Systemic Gemcitabine and Cisplatin in Unresectable Cholangiocarcinoma: A Dose Finding Single Center Study
Phase 2 study of copanlisib in combination with gemcitabine and cisplatin in advanced biliary tract cancers
Feasibility and efficacy evaluation of metallic biliary stents eluting gemcitabine and cisplatin for extrahepatic cholangiocarcinoma
In reply to: Locally advanced CC – involving hepatic vessels
Hi Uk33,
Welcome to our community. Your uncle’s recent diagnosis was not happy news and I am sorry he is in so much pain.
His experience so far is similar to some other patients who have posted on this board. When patients are referred to surgery, often the surgeon will perform a laparoscopic procedure first to take a direct look at the tumor. The abdomen is a crowded part of the body with many organs, blood vessels, bile ducts and other features, so sometimes tumors and the extent of spread look different in person than on the images. It does happen sometimes with our patients that the cancer proves inoperable despite a more optimistic picture in the scans. When this happens it is hugely disappointing, and also the patient has a recovery to get through from the initial exploratory surgery.
Gemcitabine together with cisplatin is the workhorse chemo treatment for this cancer. Radiation is used to treat cholangiocarcinoma, but less commonly. For certain presentations of the cancer, it is reported to offer a potential benefit. Treatment options should be discussed with the doctors, to learn the expected benefits, potential side effects, and other information needed to make an informed choice.
Cholangiocarcinoma patients can experience pain, sometimes substantial, resulting from the encroachment of the tumor(s), or as a side effect of treatment. Your uncle is contending both with the cancer and with recovery from the surgery and bypass procedure. Pain can be managed, but it is very important to be proactive and to insist with doctors that they adjust pain medication to bring maximum relief to the patient. Often pain management with this cancer is trial and error – if the current regimen is not working, then the doctor should offer an alternative medication(s) or dosage(s). Also, it can take some time for the digestive tract to return to normal functioning after surgery. His doctor may be able to offer relief from issues such as bloating or constipation.
I am sorry your beloved family member is going through such a difficult time. Hopefully his doctors will offer a treatment plan to bring the cancer under control and will given him better options for pain management. Covid complicates all of our lives in many ways, but for cancer patients, covid has been a particular challenge. I hope your uncle feels better soon. Please stay in touch, take a look at the resources for patients and caregivers on the Cholangiocarcinoma Foundation website, and send any questions our way.
Take care, regards, Mary
Cisplatin and Gemcitabine Chemotherapy and Lenvatinib for Patients With Unresectable Intrahepatic Cholangiocarcinoma
https://www.clinicaltrials.gov/ct2/show/NCT04527679
GDC-0980 (apitolisib) treatment with gemcitabine and/or cisplatin synergistically reduces cholangiocarcinoma cell growth by suppressing the PI3K/Akt/mTOR pathway
Treatment of Patients with Advanced Biliary Tract Cancer with Either Oxaliplatin, Gemcitabine, and Capecitabine or Cisplatin and Gemcitabine-A Randomized Phase II Trial
FIGHT-302: first-line pemigatinib vs gemcitabine plus cisplatin for advanced cholangiocarcinoma with FGFR2 rearrangements
Hi there – I was hoping to find out if there is anyone on this site who has had experience with Ampullary Adenocarcinoma.
My father was diagnosed with ampullary adenocarcinoma in March 2019 and he had successful Whipple Surgery in May 2020, followed by chemo for 6 months. He was given the all clear earlier this year. Unfortunately we heard last Friday that he now has Liver Metastases, Stage 4. He is otherwise pretty healthy and walks around 2 hours a day and plays golf 2 to 3 times a week (without a buggy/cart).
I am based in California but he is based in the UK and has had all the previous treatments and surgery in the UK. As we haven’t had the greatest response for potential treatments there we are exploring options in the USA (or anywhere in the world) and wanted to see if there may be some other possible treatments/surgery available to him.
The initial oncologist in the UK said that it is inoperable and they suggested the chemo drugs Gemcitabine with Cisplatin.
We have reached out to other oncologists in the UK who specialize in Bile Duct Cancers and have looked into some trials in the UK but have been told as its ampulary adenocarcinoma it wouldn’t be a match for the trial drug (Pemigatinib) (the hospital have just heard back from the sponsors and unfortunately they will not allow my father into trial screening as they think it’s very unlikely that ampullary cancers will harbour a FGFR alteration). I believe another potential trial drug that has been mentioned is Topaz 1 – we are waiting for more info about this. Anyone have any experience with Topaz-1?
We were also told that the immunotherapy drug Tecentriq (in combination with Avastin) wouldn’t work for ampulary cancer as well. Another immunotherapy drug that was suggested is Pembrolizumab – used in conjunction with Gemcitabine with Cisplatin. We are also waiting for more info on this one.
He is going to UCL Hospital in London tomorrow to do a liquid Foundation Medicine profile so I am hoping once we get this this might be useful for potential trials.
Right now, we are looking to get a second (or third or fourth) opinion and find out if there are any possible alternatives to just chemo in case it looks like the only way to get treatment/surgery is for him to come to the USA.
Any thoughts or suggestions would be greatly appreciated.
Thank you!
