Dad diagnosed with Klatskin
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Izabella……cholangiocarcinoma patients rarely qualify for a liver transplant. The criteria is very strict. Like you, most of us wish to just get arid of the old and replace with a new liver. However; given the antirejection medicine required with transplantation, chemotherapy could not be administered because; metastatic disease means that the cancer is in the blood stream.
As Kris has mentioned, stay hopeful for your Dad’s response to treatment to be everything you wish for.
Hugs,
MarionIzabella –
The chemo may not be as bad as you are worried about. There are many, many people who do the Gem/Cis with very few side effects. Everyone is different and reacts differently. There are plenty of people who don’t have any issues. The neuropathy is something that they docs will monitor for and they can reduce the dose if he starts having issues. Eating well balanced meals and keeping his protein intake up will help.As for just taking the liver out….we can’t live without it. Also they only like to do transplants on patients who have a good expectation of a long life. I know here it the US there are strict criteria for transplants that often include age as a factor. And the concern with transplants with cancer is that there may be metastasis that they don’t know about that will in turn attack the new liver. Then things are right back where they started. I know we are starting to see more living donor transplants….that is where a part of the liver is removed from a living donor who matches and is transplanted into the person who needs it. The liver will regenerate itself as long as there is at least a third of it to support the body while is regrows.
I know it is so unfair….and angering. I lost my husband a month ago to this cancer. Just less than 2 years after a supposedly successful resection surgery. He had a clear scan on February 9th then went to the hospital for a bleeding ulcer and they found some mets on the lining around his lung. He was finally rediagnosed with Stage 4 metastatic CC on April 27th and he passed on April 30th. He was only 51 years old….would have been 52 this year. So here I am a widow and I am not even 50.
I would go with the Gem/Cis and if it works well it might open up other avenues of treatment. The other thing you might look into is a biopsy and having the tissue sample sent in to Foundation One or another place that does the genetic mapping of the CC. There may be a mutation that is treatable with another chemo agent or you may be able to find a trial in Sweden or another country that is accepting members with that mutation.
Hang in there. Sometimes there really is a light at the end of the tunnel….it can just be hard to see.
KrisV
Hello friends…
The plan is to monitor Ca 19-9 and then if still high, he is starting with gem/cis…. So afraid of the side effects like neuropati.
When is a transplant an option? I dont get it why cant they just remive the whole bloody liver? Is the risk so high to get mets again? Mayo says bo because of the mets and Sweden is far behind Mayo and copies Mayo alot.
Can i donate my liver perhaps?
Izabella –
I am with Marion, I don’t think you have exhausted all the options that are available yet. There are many other options available out there. Not sure about Sweden but you might see if there are any trials available for your father. You never know what might work.
Hang in there.KrisV
Izabella……other chemo agents are available. I assume that the oncologist will meet with you and discuss. Your Dad may very well respond favorably.
I realize that your are fearful (who wouldn’t be?) but I don’t believe that that all options have been exhausted as of yet. And, no, the liver won’t collapse, but you are a long way off from thinking in these terms.
Please try to relax and await the physicians next course of action and most importantly await your Dad’s response.Hang in there, dear Izabella. This disease likes to throw curveballs our way, but we have learned to rely on our boxing gloves.
Hugs,
MarionForgot to say that his liver tests are all normal…. So strange? The tumor i growing but liver is ok?
Hi guys
We had a meering with the onc that said it looks good on CT but we wanted a second op with borh surgeons and oncologist together to look and judge the pics. They did that today. Phonecall today from another onc that said that the runor has grown. No mets visible but the tumor has since last scan in jan grown a bit. He said that it could be that the chemo isnt working.
Ca 19-9 is elevated. from 196 18/3 to 984 22/5.
So what should we think now? Try other chemo?
Try something else, give up? My dad is so tired with chemo, 5:th round now.
What do you die from? The liver collapsing? How long will it take before it invades the whole liver? I mean in other cancer types people often die because of the mets not from the primary tumor. How is it with klatskin?
I will call the onc tomorrow and ask for immuntherapy and targeted test (mutations). I dont know more what to do?
Is it possible to donate liver?
Izabella –
Welcome to this best family to support you through this. I am sorry that you are having to go through this. You will find this group will be able to assist you and your family navigate this.You can do a search of the posts but using the search button on the header. Targeted therapy would be looking at the genetic makeup of the tumor and see if there is a specific treatment targeting a mutation that you have like the BRAC or BRAC2 mutations…..they do this some with breast cancer and other cancers. It is an option to look into,
Good luck with everything and keep us posted.
Hugs,
KrisVI did contact the biggest surgeon in sweden in GI and he also said that because of the metastats no one will perform a surgury. I also emailed Mayo Clinic as they are leading center. They gave me the same ansvwer: if he has small mets they cant do a liver resection and also no transplant.
When Mayo says no its seem like they know best.
What do you mean with targeted treatments? Is there any tests for this just like chemo test?
What do you say about ca 19-9? I have read alot of studies and although its significance is debated its not a good sign for my dad to have so much higher now then before chemo
I have also looked up trials in Sweden, but nothibg is ongoing right now.
Thank you so much for your answers, i appreciate it alot
Izabella,
Thank you for your post about your dad’s CC diagnosis and treatment. The information you posted may help someone in the future. Meanwhile, I agree that it might not hurt to get at least one more opinion as another surgeon may have a different way of attacking the CC. It’s good to hear that the oncologist has been looking at sensitivities to various chemos….and as Marion mentioned, it would be good to have the tumor tested for targeted treatments for specific mutations., if that hasn’t already been done.
Hang in there…….Julie T.
Izabella….welcome to our special, courageous, caring and kind group of people touchéd by the disease of Cholangiocarcinoma.
Although scans and other testing allow for the most accurate diagnostics available however: as you have learned, the surgeon’s eyes and hands are irreplaceable in identifying the true extent of a disease. For example: the plate of a CT measures 1 cm in thickness, hence nodules less than 1 cm in size are not detectable.
It appears that your Dad’s blood was tested for chemo sensitivity and for that reason FOLFOX had been recommended with excellent results so far.
Has your Dad’s tumor been tested for possible targeted treatments?
Perhaps the physician will want to complete the 6 cycles of chemotherapy while keeping an eye on the CA 19-9 and then switch to another agent.Hugs,
MarionDear Izabella, welcome to the best place to be for CC support. I am sorry to read about your Dad, and just want to say do not be afraid to go for another opinion as different eyes see different things. Below are some sites you may find helpful and I know others will be along with their suggestions. Please keep us updated on Dad’s progress as we truly care.
Newly diagnosed:
http://cholangiocarcinoma.org/the-disease/newly-diagnosed/
Free complimentary Book or e-mail download:
http://cholangiocarcinoma.org/news/foundation-resources/
Biliary drainage – stent information card
http://cholangiocarcinoma.org/biliary-emergency-information-card/
Register for a CURE
The International Cholangiocarcinoma Registry
http://cholangiocarcinoma.org/professionals/research/patient-registry/Hi everybody!
My dad was diagnosed jan 19 with klatskin, stage T3, locally advanced. No mets. They couldt find out what the problem was even though they did ultrasound, MR, ercp. At last they opened him up and found abig tumor primary from the gall bladder (filled) and in bile ducts. Adenocarcinoma, klatskin, near veins. Got a plastic stent. The first surgeon said that it was inoperable. We got second op. They said yes. Opened him up, found really smalll mets in the left lobe, so they couldnt go on with liver resection as it wouldnt be 1/3 liver left because of the small mets that you couldnt see but the surgeon felt them. So they are not displayed in the scans. Ca 19-9 was first 450. After removing the bladder down to 80, then up to 200. Removed stent because of blocked ducts and sepsis. Elevated liver test. Got a new stent in12:th of may.
He did have allt of pain in stomach maybe because he was opened 2 times and have large scars or maybe because of the tumor.Moved on to palliative chemo. Hi got a test that showed that his cancer responded best to FOLFIRI compared to standard gem/cis. You know the type; very aggressive cancer that doesnt care abou chemo…so FOLF was the least BAD option. He has ben on 4 rounds and all liver test are pretty much normal. BUT ca 19-9 shows 980…… No mets accordning to last scan made 15 th of may.
So what should i think? Do? We have appointment with the onc on monday.
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