Search Results for 'gemcitabine cisplatin'

My name is Hugh, im really happy to see there is such group here which really helps and can see some positive things other than those Ive been searching..

My wife Joe age 43 diagnosis CC on the 25th April 2013, due to stomach pain (for almost a month) and on that day her face and eyes turns yellow so we rush her to hospital and the out come for sure everyone here should knows…

lucky thing is she did surgery on 10th May, which took out half of her liver, bile duct and some lymph nodes around that area… result seems to been pretty fine and she came out of hospital in 5 days after the surgery..

now she still resting at home, her body weight seems to go up and down after her surgery.. the day arrived home at 102lbs.. then up to 112lbs in 10 days… but for the last 5 days she drops back to 104lbs… I know she need to keep her weight up for the next battle.. but somehow she didn’t keep up and the Dr said that’s normal after surgery…

she did a Pet scan 2 days ago.. it also seems pretty good that no other place got infected other than those place which did surgery got some kind of signal and that the Dr. already told me it will happen be4 the scan

My question is there are 2 ways of adjuvant treatment from 2 different Dr. I consult. which one should I choose…

1. GP which is Gemcitabine and Cisplatin for 3 weeks treatment total of 6 treatments (which is totally free through government hospital)

2. IMRT with Xeloda for 5 days a week total of 5 weeks treatment and then if possible 3 more 3weeks treatment of Xeloda and Oxaliplatin for preventive.
this sounds more aggressive and for sure this I have to pay massive amount which is not cover by government nor insurance.

Hello,

I’m new to this site, I’d thought I’d submit a post of our recent dealings with CC.

My mom has recently been diagnosed with CC. It started in August 2012 with an ultrasound scan for a completely different reason. Whilst she was having the ultrasound they spotted a mark on her liver. She was then sent for a CT scan and blood tests.

In September my mom had an appointment with the doctor at our local hospital who confirmed that they believed my mom to have liver cancer, due to the mass on her liver and the elevated blood levels. However to be sure they wanted to carry out a biopsy.

This was carried out that week with the test results confirming their thoughts that mom had CC. This obviously came as such a huge blow to the family as Mom was not symptomatic at all, which I have since learned is quite common with CC.

The next day that we found out coincidentally Mom was showing signs of Jaundice, I arranged for her to have another Ultrasound to see if she had a blocked bile duct, which she did.

Since then Mom has been treated at the QE hospital in Birmingham, UK. She was admitted at the end of October to have a stent to open the bile duct. She recovered really well from that and was discharged relatively quickly.

After another appointment at the QE we were told that Mom’s mass is circa 9cm and invading her portal vein. Because of this they have said that her CC is in-operable and her treatment route would be chemo. At this point mom was completely un-aware that she was in-curable. I’m sure you can imagine how this was, the Dr though broke the news so blase, and just said ‘sorry about that’!! Mom has asked not to know about prognosis. I dont think knowing any statistics would do her any good. She barely asks questions of the dr because I think she is too scared to know the answers.

They decided that mom’s treatment plan would be 8 rounds of Gemcitabine and Cisplatine, once a week for 2 weeks then a week off. Her chemo treatment didnt begin until early November, by which point I think my mom had thought they’d given up on her, seeing as it was nearly two months since it all began and she hadnt been given anything by means of treatment.

Mom has now finished this regime and has coped amazingly, she has not had any nausea, sickness or any major side affects. The only complaints she has had have been ringing in her ears so the Dr reduced her Cisplatin and a bad taste in her mouth. She has not been in any pain or even been taking painkillers, still symptomless. She had another CT scan half way through her regime and the results were fairly promising, the Drs were pleased, and said that overall the mass had stayed the same and they confirmed it had not spread anywhere else.

However, ever since Mom has finished her chemo (which was probably about 3 weeks ago now) she hasnt been very well. She developed the shivers and a high tempertaure so we took her to hospital where she was given antibiotics. Around this time she was so fatigiued that she didnt have the energy to do very much at all. I have been wondering if this is normal once treatment stops? She has been so tired these last couple of weeks, is that finishing treatment along with contracting an infection that has wiped her out?

When recovering she also tried picking up her small (but heavy) dog to put her on the bed and she’s not sure if she’s pulled her side as since then she’s had a pain in the location where she had her stent. Is it possible to dislodge a stent from something like that? She has been back to our local GP who said her vitals are ok. She’s worrying herself sick though, she’s a natural worrier anyway but seeing her like this worries me. She has decribed the pain as a kind of scratching. I’m unsure if it’s the stent or the cancer.

Has anyone else had anything like this?

Mom’s due another CT scan in a few weeks. To be honest I think we’re all dreading it. I’m getting married in a few months time and all I want is for Mom to there and well and to enjoy the day with us all.

Thanks guys

This discussion forum board is absolutely wonderful.

After experiencing jaundice and stomach pain for over a week, I checked myself into a local Orlando hospital’s ER in early April 2013. After MRI and CAT scans, drs noticed bile duct obstruction. Utilizing ERCP (endoscopic procedure) and interventional radiology procedures (PTC), specialists were unable to placed a stent at the obstruction area and had to put in an external biliary drain. Drs were unable to identify the cause of the blockage but had serious suspicion that cancer was involved.

My wife and I then decided to fly out to the highly regarded MD Anderson of Houston for 2nd opinion from Dr. Jean-Nicholas Vauthey. Dr. Vauthey ended up admitting me to the hospital so they can attempt to install the stent & determine the cause of the blockage. After successful install of the stent and taking sample of very tiny “nodules” near my liver/abdominal area (peritoneal area) for biopsy, we were given the devastating news by Dr. Vauthey that I have been diagnosed with stage 4 CC. Dr. Vauthey is unfortunately unable to operate on me and the onsite oncologist is recommending chemotherapy (Gemcitabine & Cisplatin).

I’m 37 years old and happily married with two daughters (3 yrs & 11 yrs).

I would be grateful for any feedback or ideas on what the next step should be. I was wondering should I get 2nd opinions first before starting on chemo treatment? Maybe there’s a chance that a different surgeon would do surgery? I also hear that Mayo Clinic offers more than just chemo treatments like radiation & photodynamic therapy.

As you can see, lots of thoughts/ideas running thru my head

-Jason

Hi. I came across your foundation website when I began my research into intrahepatic cholangiocarcenoma. My wife was just diagnosed with ICC. We have not started treatment yet but the course laid out for us is chemo (gemcitabine/cisplatin) and then radio-embolization.

As with many others posting, this was an absolute shock as she is very healthy, active and very health conscious. She always goes to doctors for care and for maintenance procedures.

We live in Eastern US and are planning to get consult visits at a few cancer centers, including Sloan and U. of Penn. Trying to set those up now.

We are also going to pursue clinical trials if she is a candidate.

Right now our heads are spinning. But we are preparing for battle and have a great support group of friends and family.

Hello everybody,
First time poster, long time reader here.

I stumbled across this web site a few months ago during my DIY research in to CC. After reading lots of people’s stories, I’ve decided it’s time to share my father’s experience with this awful disease….
It has been a long and hard old slog, with many lows and highs, but most importantly after originally being diagnosed in September 2008 my father is still alive and kicking, living an otherwise normal life, working full time and playing golf at weekends.

Here is the story in full, sorry but it’s an extraordinarily long post…

So as I mentioned, my father (Martin), 49yrs at the time, was diagnosed with Cholangiocarcinoma in September 2008 and was referred to St .James Hospital in Leeds for a liver resection under the care of Mr K.R Prasad.
At the time the tumor was deemed inoperable because of its size and proximity to the hepatic artery. However, thankfully after a round of chemo-embalization the tumor had shrunk just enough for Mr. Prasad to attempt a resection (trisectionectomy). We were told that “luckily” his tumor was encapsulated within the liver and hadn’t spread, so the resection would be a possible cure, although the chances of a reoccurrence were still quite high.

During an 11 hour long surgery (February 2009) my father had about 80% of his liver removed, we were told the operation was a success and that the entire tumor had been removed. However, the battle was not over , the worst was still to come…

Three days after the operation my dad, who was very physically weak at this point suffered a heart attack late in the night. We later found out that he had got pneumonia and it was this that led to the heart attack. It was not looking good, he was highly unstable, the doctors told us it was touch and go and basically to prepare for the worst. It goes without saying that this was the worst night/few days of our lives. To make matters worse, on the same night my Grandad (my dad’s dad) passed away in hospital following surgery on his heart (he had an aneurism and required a stent). Upon opening him up for surgery it turned out that his organs had completely shut down and that there was nothing they could do.

Given the fragile state of my dad we were advised by the doctors at Leeds not to tell my dad about his father’s passing until he was in a more stable condition. This was obviously very hard as my dad knew he was going in to surgery and kept asking about him. Having to lie to him was heart breaking but unfortunately necessary.

Miraculously my dad recovered from the heart attack and liver resection, slowly but surely we saw signs of improvement. Thankfully he was allowed out of hospital be at his father’s funeral. In hindsight he was probably not well enough to attend and the funeral and it took a lot out of him. The funeral should have been put back to a later date (but that’s another story, involving a large family with lots of differing opinions).

My dad remained in St James (Leeds) for approximately 2-3weeks following the operation, he was still very fragile but had regained colour and was able to move around. However, his appetite was very poor and most of what he ate he brought back up (we later found out this was partly down to a broken jaw caused by our incompetent (ex) dentist) Upon his release he was still suffering from bile leakage and so the district nurse would attend the home every other day to help dress his wounds, attend to the leakage and replace his drainage bags.

Since the operation my dad has been having quarterly CT Scans at St. James in Leeds. He has recovered remarkably well and despite the cancer was probably fitter than he’d been in a long time. Having been slightly overweight at 14/15 stone before the cancer, he dropped to a worrying 8 1/2 stone around the time of chemoembolization and some time after surgery. He now maintains a healthier 12-13 stone. Albeit has developed a hernia around the abdomen.

Everything was looking peachy until the scan of December 2011 which showed that lesions had developed in his left lung (lower lobe). He underwent further surgery in March 2012 to remove his left lower lobe and Pathology results showed that the lesions were indeed Cholangiocarcinoma.

Since March my dad has been very well and active but again unfortunately the scan of September 2012 showed 2 lesions back in his liver and one in his lung, the largest being 26mm. Mr Prasad decided at this point to refer Martin to Oncology (Sheffield Weston Park) as he felt surgery was not an option given that the CC cells were seeding around the body.
The consultation with an Oncologist at Sheffield Weston Park in November 2012 was disappointing. We were told that chemotherapy is not very effective on this type of cancer and since Martin is fit and well, showing no symptoms and the cancer is very slow growing it would be pointless to have it at this time. So the plan remained to scan Martin every 3 months and monitor the growth. Our view was that surely you want to undertake chemo while you’re fit and well and not when the cancer has taken over and your immune system is down??

At this point I took it upon myself to seek out second and third opinions. I sought the advice of two specialists in London (Located on the AMMF charity website). Having requested the scans and a letter of referral from Dr Prasad (who had been excellent in the care of my father) I contacted Dr Shahid Khan (Imperial College London and St Mary’s Hospital) and Prof David Cunningham (Royal Marsden Hospital) to see if they could review my father’s case.

Both Dr Khan and Prof Cunningham were very helpful and following review at their MDT meetings put forward suggestions to Leeds St James. The general consensus was that Martin should have chemotherapy to see how the cancer responds. They also noted that the metastases may be amenable to ablation, but it would be pointless to do this without prior chemotherapy to try and treat the cancer cells that have already seeded outside the liver as he would simply get recurrence again and the ablations would not be curative or life prolonging.

Dr Prasad agreed with their suggestion of chemotherapy (and not Sheffield’s idea of waiting until the cancer became more aggressive), however, he was not keen on the ablation route as it could undo some of the major reconstructive works undertaken on his liver during the resection. He was keen also to point out that my father’s liver now functions very differently from that of any normal persons, and ablation could cause more harm than good.

So after a few months of’ back and forthing’ between Sheffield, Leeds and London a decision was finally been made by Leeds St James (Mr Prasad and the Leeds oncology team) to proceed with some rounds of chemotherapy. 18 weeks of chemo over a 3 week cycle (so 6 in total) of Gemcitabine plus Cisplatin.

The good news is that the Scan at the end of Jan 2013 showed very minimal /if any growth of the tumors since the September 2012 scans. He is due to have one more scan today ahead of the chemo, with a view to starting chemo on 23rd April. However, we have been told that depending on the results the chemo may be delayed. We were told that it is important to start at precisely the right time (i.e. not to start too early but to catch it before it advances too much) as the chemo can only be done once because the cancer builds up a tolerance to the drugs??

And finally, a few more points to note. Following the decision from Sheffield Weston Park in November 2012 where we were essentially told that nothing was going to be done, we decided to start doing whatever we could to try and delay/reduce any further growth. My dad started on the anti-cancer diets and picked up the following books:

http://www.amazon.co.uk/Anticancer-A-New-Way-Life/dp/0718156846/ref=sr_1_1?ie=UTF8&qid=1365591558&sr=8-1&keywords=cancer+diet

http://www.amazon.co.uk/Cancer-Survivors-Guide-Foods-Fight/dp/1570672253/ref=sr_1_5?s=books&ie=UTF8&qid=1365591588&sr=1-5&keywords=cancer+survivors

We found the books quite useful and have helped him to maintain a healthy diet, cutting out all the sugary foods and processed rubbish in supermarkets and eating mainly a predominantly organic vegetable orientated diet. It has been quite difficult for him as my dad always did have a sweet tooth! He also bought a juicer and makes some lovely juices using all different types of vegetables and fruits. What I found astounding though is the fact the literally none of the doctors or medical profession (that we have come across) seem to believe that these changes to diets actually make a difference! We just keep getting told “everything in moderation”, seems a bit of a cop-out answer to me but, hey ho whatever happens I can’t believe that maintaining a healthy diet is a bad thing, for one it surely boosts your immune system and that has got to be key in fighting cancer and it’s symptoms.

A friend also advised us about trying hemp oil (basically an oil containing Cannabinoids from the Cannabis plant). At first I thought the idea to be completely ridiculous not to mention the illegalities of it, but, if you do your research there are plenty of personal experiences and studies out there (albeit mainly limited to animal and cell lining studies) which show some positive results in the treatment of cancer using extracts from the Cannabis plant. I found this one very interesting: http://petition.iowamedicalmarijuana.org/2012/Leelawat_2010.pdf

Also, if you look up ‘Sativex’ you will find that GW Pharmaceuticals have developed a similar kind of spray that is used to treat patients with multiple sclerosis, so the proof is in the pudding that the true medicinal values marijuana are starting to surface.

Anyway, we did manage to source some hemp oil from a friend and as I mentioned earlier the scans between September and Jan there were no signs of tumor growth. Whether this can be put down to the hemp oil or the diet, I cannot say, but it is food for thought at least.
We also spoke to the doctors about the hemp oil and most of them laughed it off saying they had never heard of it. However, we were told that they didn’t think it could do any harm in taking it (at least while he was not on any other medication) and most recently the doctor in Leeds told us that actually they were currently undertaking clinical trials in Leeds involving Cannabis related medications.

As things stand currently my dad remains in good general health, he is showing no symptoms of the cancer at present and continues to live a relatively normal life. The outlook of the consultants and doctors remain mostly negative and keep reminding us of the poor life expectancy (it does wonders for confidence that…), but we are nearly 6 years on from the original diagnosis and unless the cancer suddenly becomes more aggressive (fingers crossed it doesn’t) I believe there is still plenty of hope!

Hi all ~

Two weeks ago, my healthy and beautiful 58-year old mother of 5 children (ages 22-33) was diagnosed with Stage IV cholangiocarcinoma with mets to her liver, bone, lung, and lymph. We’ve been told that neither resection nor liver surgery are possible due to tumors on both lobes, though I wonder if this is really true given the liver’s ability to regenerate, and given her strong underlying fitness and health baseline (discussed below). Also clearly not a transplant candidate given the Stage IV. When a scan early this week revealed more bone disease than originally thought, she was rushed into an emergency night-time MRI, and the next day scheduled for neurosurgery to remove her completely diseased (and fractured) C4 vertebrae and surrounding discs, replacing them with a titanium cage to which the C3 and C5 will ultimately fuse. This procedure was successful yesterday, though during it her esophagus incurred a tiny puncture which received 2 stitches so she can’t eat or drink for 5 days (currently 115 lbs., 5’4″). Once she recovers from this (2+ weeks?) she’ll start a traditional front-line chemo course for CC. (Likely the 2-drug combination of Gemcitabine + Cisplatin (Gem/CIS) though discussions are also being had over FOLFOX, and 5-FU). One oncologist suggested only palliative care for containment and pain-management, and the other suggests an aggressive “all out” approach to try and kill all the cancer, though all have been careful not to use the word ‘cure’. One of her several UCLA oncologists (this one specializing in hepatology and biliary issues) is consulting with Dr. Javle at HDAnderson in Houston, and they’re discussing treatment options. She may simultaneously have radiation to treat some additional bone spots in her thoracic and lumbar regions. Pathology reports, MRI’s, PET, CT, upper endoscopies, barium imaging, x-rays, etc. have ruled out the usual primaries (breast, brain, lung, liver, colon). Belief at this time is that the primary is either CC, or it may fall into the range of “3-4% with undiagnosed primaries”.

We’ve recently learned that she was accepted into an anti-PD1 trial, which is not chemo but leads the immune system to fight the cancer. Tissue samples from 2 separate liver biopsies and the C4 vertebral tumor are also being sent to GenenTech and the Caris Foundation for evaluation.

Interesting family history background — Her father was diagnosed with Stage IV colon cancer at the age of 58 (same age of her current diagnosis), with mets to his liver and lung. He died from these complications at age 59 1/2. His cancer was treated with 5-FU, one of the same chemo’s they’re considering for my mom’s treatment today, 23 years later. (Is this really the best course? Had medicine not advanced beyond this in 23 years?). It has been suggested to us children that we be genetically screened for Lynch Syndrome, and/or request routine PET scans in our mid-thirties onward for early identification, should anything exist. So far, the apparent trend with my mom and her father suggests a genetic predisposition, though his parents lived into their 80’s on both sides (both dying of heart issues), her mother is still alive, and her 2 brothers (53 and 55) have no known issues of this nature though are pursuing testing at this time. Any known links with Lynch Syndrome and CC diagnosis? So far, doctors are mixed on this.

She has maintained a gluten and dairy free diet, takes many herbal and other supplements (including recancostat currently), avidly exercises, has utilized acupuncture and chiropractic throughout her life, and has always been proactive about her health and wellness (colonoscopies beginning at age 35 – always clear, etc.). No routine preventative exams revealed any of this; there were no liver enzyme spikes, or other abnormalities. She discovered a lump in her stomach during a Pilates class 3 weeks ago, and her PCP referred her to a specialist which revealed the lump to be liver tumors. Here we are today.

I guess what I’m looking for from this board are tips, suggestions, advice, help, support, cutting-edge treatments, research, or any other things people who have loved ones with this rare cancer typically seek. I’ve never done this before and it’s heart-breaking, scary, and sad. I’ll continue to post updates and her treatments, procedures, etc. in case it’s of interest or help to others out there. Thanks and best wishes for health to all.

ADH-1, Gemcitabine Hydrochloride and Cisplatin in Treating Patients With Metastatic Pancreatic or Biliary Tract Cancer That Cannot Be Removed By Surgery

http://clinicaltrials.gov/ct2/show/NCT01825603