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  • #14945
    sara
    Member

    Maggie –

    I am so sorry to hear of the news about your mom.

    My good friend did oxaliplatin, and later added in the 5-FU. The oxaliplatin was actually the first chemo she was given, and she achieved mild shrinkage from it. (It shrunk her large tumor by 17%) It did decrease the pain substantially. It also has some different side effects – most notibly the increased sensitivity to cold. It’s also known for decreasing the feeling in your extremities (impacting finger dexterity), and I believe this side effect can be permanent. She didn’t do the 5FU for very long, so I cannot really comment on it. But there are many others on here who have included it in their chemo regime.

    Whether or not to head down this road is a personal question. The reality is that it’s not a cure. These drugs may help by slowing the tumor growth, thereby cutting down on the tumor pain and possibly giving your mom more time. The effectiveness of the drugs seems to vary greatly across all patients. Your mom may tolerate the side effects very well, or they could make her quality of life decrease significantly. I wish I could give you a clear answer on this, but unfortunately there is no clarity with this cancer. All I can say is that towards the end, my dear friend was so weak that her last chemo treatment almost took her from us. After her two week stay in the hospital, she opted to stop the chemo and try and enjoy what little time she had left. It’s a balancing act.

    Please know that we are all thinking of you and your mom.

    #14943
    maggie
    Participant

    Hello everybody,

    Thanks for all your help so far. I sent out my mum’s scans to numerous cholangiocarcinoma experts and many have been very helpful.

    Unfortunately, things here have gone from bad to worse. My mum’s previous scan (Dec 12) showed that there were 2 tumors in the hilum of the liver. However, her scan yesterday showed that there are now multiple new tumors throughout the liver. As the disease seems to be progressing very rapidly now (after a good initial response with Gemzar), her doctors think that she may only have a few weeks left. Obviously this was very distressing news for us.

    As a last ditch attempt we are looking into second-line chemotherapy (5FU and oxaliplatin has been suggested to us) or photodynamic therapy (PDT). At the moment, her quality of life is reasonable as her doctors are working on reducing the lower back and abdomen pain (mainly at night) and the nausea.

    I’m not sure whether the potential benefits of second-line chemo would outweigh the risks. The last thing we would want to do is to reduce her quality of life with a treatment that only has a tiny chance of having any benefit.

    Has anyone here had good results with second-line chemotherapy by any chance?

    Thank you all for your help. This website is a great comfort and support line for me and I wish you all the very best.

    Maggie

    #14851
    andym
    Participant

    Hi CPS
    I have or should really say had bile duct cancer diagnosed in August of this year and operated on in October. My surgeon was Mr Diamond in the Mater hospital in Belfast all I can say is he is brilliant, he carried out a whipple on my and i have no problems i was home in less than 2 weeks. I was then sent to the new cancer centre in Belfast City hospital and I am due to start chemo in December they are giving me 5FU but there is very little info or trials done on bile duct cancer so this is their best guess.

    #286

    Topic: Introduction

    in forum Introductions!
    andym
    Participant

    My name is Andrew Morrow and I was told in August this year that I have cholangiocarcinoma or bile duct cancer (it’s much easier to say and spell!) I was taken into hospial as I had really bad stomach pains and I turned jaundice, at this time the Doc’s thought I have gall stones. After ultrasounds and MRI scans thay could not find any stones, so as I was still yellow and in pain they decided to do an ercp and put a stint in the bile duct. During the ERCP they took cell samples and they turned out to be cancer. I was they handed over to a Mr Diamond in the Mater hospital in Belfast and he carried out a Whipples procedure. My cancer had spread through the bile duct and into 1 lymph node, Mr Diamond removed 11 nodes so only 1 was infected. Thankfully the tumor was at the very bottom of the bile duct and my liver is clean. I had the op on the 2nd October and I have recovered very well. I spend less than 2 weeks in hospital. I then was sent to the Cancer centre in Belfast City Hospital were I was told the tumor was completly removed and the docters have every confidence that I will be fine. Its all down to time now to make sure it does not come back, I had very clear margins so God willing I will make a full recovery. I have been offered Chemo to mop up any lose cells and this is due to Start in the 4th December 2006, they are giving me 5FU.

    I don’t know too much about this illness except that its very rare, and information that I have read says that recovery is rare but I have every confidence that this cancer will not ‘get’ me as God has been with me every step of the way, infact because of my cancer I turned to God and committed my life to him, he has carried me every step of they way.

    God Bless
    Andrew

    #14875
    stacie
    Member

    Mels,

    Mark’s was on the same regimen as your brother for several months with good results as well. However, his neuropathy was starting to not go away between treatments, then the chemo stopped working anyway, so we stopped the treatments, the neuropathy continued and got a little worse. Our oncologist told us that is would gradually dissipate with time and then it might/might not go away all together.

    Mark told me on Saturday that his neuorpathy has completely gone away – he has been working with a naturopath as well.

    I think this is your brother’s first shot at chemo? If it is then he still has many options to look at. You will probably want to go into the patient profiles and find out what other patients are using and then take those options in to his oncologist and find out what direction he wants to go. You still have good options available, in 5FU or Xeloda, both have significantly less side effect than oxaliplatin, he will probably find them much easier to tolerate – he can keep the avastin as well as the body does not build up a resistance to it.

    Let us know what you decide.

    Stacie

    #14813

    In reply to: Tarceva

    dexter1
    Participant

    My Husband has been on Tarceva for two months. Has had no new side effects.
    He had 40 treatments of xl119 /5FU study first and was pretty exhausted going
    into Tarceva. He had a CT scan today but we will not get the results until 11/22.

    He was diganosed 10/10/05 with Cholangiocarcinoma Bile duct that spread to liver and then spread to the Lung in July 06 so had to come off the Clinical Study He had
    5 to 10% shrinkage in May on the xl119 5FU but then found out it had spread to the lung in July o6.

    We had a choice of Tarceva or Cisplatin and Gemcitabine, hoping for less
    side effects we went with the Tarceva.

    #245
    mallieg
    Participant

    Hello,

    My Mother, age 53, just started Gemzar and Cisplatin on 10/04. Her second treatment was on 10/11 and just consisted of Gemzar. This was after a six month cycle of 5fu (04/06 to 10/06.) After receiving the Gemzar and Cisplatin she started to experience intense pain in her abdomen. The pain would last for about 4 days before subsiding. I was wondering if anyone else on these drugs had similar symptoms??

    Thank You,
    Alison

    #14708

    In reply to: F5U vs. Xeloda

    stacie
    Member

    Mark has been on both. He was on 5FU for a couple of months, but you are right, it was more difficult to be hooked up for two days. The difference is that Xeloda, which he takes now, is in pill form and is a little harder on the liver (the liver has to process it) and most patients don’t want to stress the liver any more than it already is, however, our oncologist was not concerned about this, he said this was minimal if any. Xeloda does appear to have different side effects than 5FU as well.

    Mark has tolerated the Xeloda very well and has had very few down days as compared to his other regimens. If you need more details you can look at the published works on both 5FU and Xeloda on pubmed

    Hope this helps.

    Stacie

    #14705

    In reply to: Hello Everyone

    jules
    Participant

    Alison and Mike

    I am sorry to hear about your mum. Where are you? – I know of one trial in the UK using XL119, I heard that all the patients where taken of 5FU and given the XL119 because the patients in that arm were doing so much better.

    My Dad was on gemcitabine and carboplatin which made him quite tired. Platinum drugs and gemcitabine seem to be the first line treatment for non resectable disease, you should be aware that there are different generations of platinum chemo drugs (ie some are newer and better on the toxicity front then the older ones) carboplatin is not as harsh as cisplatin (2nd generation) and oxylplatin is 3rd generation. Quite a few patients on this site have used oxy. Treatment options vary depending on where you are and whether you have an oncologist who is prepared to think outside the box and try newer breakthrough treatments. This site is very informative – try looking at the chemo worksheets under general info section and discuss all options with your mums oncologist.

    Hope this helps, Jules

    #14632

    In reply to: Running out of time?

    mira
    Participant

    You’re situation sounds very similar to my father’s (he’s 70 though, much older than your father). He also was too ill with jaundice to receive chemo. For about two months after finding out what he had (phase 4 cc, see my intro “we have had no time”) we waited for the bilirubin levels to come down. Finally, he had another proceedure as it was felt only half his liver was draining, as the other half was cut off from the drainage tube by the tumor. Stents were inserted draining the two “lobes” of the liver into his intestine. Since then his bilirubin levels came down, but not enough for the chomo treatment the oncologist wanted to give him. Your units of measure are different than ours, but he was over 300 at the highest level and then came down to 100, we were told 20 to 30 is normal. We then switched to 5FU as a chemo drug, which can be given with slightly elevated levels (at around 50 to 60).

    My father has had his third treatment today. He is so week as his ascites and swollen lower half of his body saps all his strength, but we just aren’t ready to give up just yet. As the oncologist was very frank to say, if the patient) really wishes to continue with the chemo treatment, the doctor will agree to continue. My father is presently in the hospital, receiving care, which at this point is only a draining of the ascites once in a while. But tomorrow we want to bring him home.

    At this stage we really don’t know if the chemo is helping him or not. The oncologist warned me that the chemo was only going to maybe help stop the growth or spreading of the tumor, or maybe help the ascites. But my father feels that at this stage, any action against the cancer is better than nothing, especially since we were so anxious to start chemo. One good thing is that there aren’t any side-effects of the drugs themselves that we can’t deal with.

    I don’t know if this is helpful, but I just want to give you my little bit of knowledge on the subject. The past two months have been a whirlwind, and I can completely feel for you and your father.

    #228
    mira
    Participant

    My father (age 70) was just diagnosed at the end of May 2006 with phase 4 bile duct cancer, and last week was given 3 weeks to 3 months to live!
    We need time to sort all this out! This can’t be true from a man who has been healthy all his life.
    He is jaundiced, has two stents draining his liver, ascites, kidney failure and now internal bleeding!
    He has been too sick to receive any chomo treatment, but finally on Friday started his first treatment with 5FU with Leucovorin.
    Am I kidding myself to think there is any hope to spend Christmas together?

    #14607
    teresa
    Member

    I have to agree that until you are going through this heartbreak it is hard for people to understand how awful it is.
    I keep all of you on this site in my prayers as I have sat here many hours reading everything on this site, especially when I am not able to sleep. ( see ALAN in remembrance). I also agree about the healthy eating lifestyles. Here in england I have what is known as 3 allotments (big gardens) and have always, only done my own veg etc. Therefor this was such a shock to us . Alan first visited the doctors surgery on 16/12/05 with a pain slightly below his left shoulder in his back. He was told he had pulled a tendon. He was given pain killing tablets. During the xmas period he complained of some acid in his throat. I told him he probably had a gallstone. On the 6th Jan. 06 he revisited the docs as he had started to get pain badly around the upper right (front) gall bladder area. He was given Gaviscon. He continued to visit the doctors surgery with acid in his throat and pain that was so bad at nights he had to rock himself to ease it. He still managed to work during the day. I told him to visit our local hospital on the 12th Jan as an emergency patient at night. He was duly x-rayed and told he was constipated. He was angry as he had been to the toilet o.k. erlier that evening. In total he visited the doctors 6 times during January. This is someone who for the whole of his life had only ever had chicken pox and the mumps plus a few stitches on the odd occasion. I begged him to go and pay to see someone, his response was why should I pay to see the same people that I am visiting now. I told him to tell the doctor that his gall bladder had gone wrong and my husband who required another prescription also told her that alan was very very ill. The response was that she could not find anything seriously wrong with him.
    Finally, I told him that I would call them if he did not go back to another hospital, and we, alan and I both visited the hospital as an emergency patient. That was on the 15th of February. Alan had managed to work up until the 6th of feb. After being really messed about and diagnosed with gall bladder problems and various other things we were told on the 1st of March 06 that it was almost certain that he had C.C. There were lots of tests done that I expect most of you know about and finally two attempts to put a metal stent in to drain the bile. All of this took until the 3rd week in march.Alan had been told he may have some chemotherapy for 6 weeks but if there was no change this would be stopped. It was discussed with alan that there would be a combination in the form of ECF. This was Epirubin, Cisplatin and 5FU. There would have been a Hickman line inserted and one drug seperately each week .i.e.3 weeks and one week free. It then became a bank holiday and alan wished to go to spain to see his beloved motorcycle racing with 3 of his friends. He was advised to go as it would not make any difference as the line would not be fitted that week. He was still going to the bank etc until the 14th April but losing weight so rapidly it was unbelievable. On our second visit to the oncology unit we were told that it would not be advisable for him to have the chemo. He was having difficulty eating or even keeping any food in his body. He was then offered palliative care. I felt so helpless as there really wasn’t anything that could help alan. He never once showed anger but only begged me not to let him lie at home for long. He did not wish to be messed about and at the end passed away so very peaceful in his sleep. I am now so pleased that both alan and I only knew for about 7 weeks that he was going to die. He did this with such great courage and dignity that we have now raised so far

    #13778

    In reply to: XL119

    geoff
    Member

    Woody

    You say that the XL119 Ph3 trial is being changed to open status. Please could you provide a link to the source of that information ? Reason I ask is that I live in the UK and there is an XL119 trial here too but I declined to participate because half the participants get 5FU rather than XL119 and of course being a blind trial they don’t know what they are getting (not sure how you managed to find out). If the US trial has changed to giving all participants XL119 that could imply that the results so far show significant benefits from XL119, as you say very good news.

    Thanks

    Geoff

    #14529
    kellewis
    Member

    Stacie,
    Thank you so much for the links and the info on the chemo therapy.
    That’s exactly why I’m pushing my current Oncologist to fully diagnose me with CC. As I mentioned earlier the Doc’s at Stanford are 93% sure it’s CC and she doesn’t seem to want to entertain that idea at all. Which I find very frustrating because of the chemo treatment alone.
    And you’re right….. two weeks ago I had my first cycle of Taxol / Carbo and my hair is steadily falling out.
    With 5FU, it’s my understanding everyone is allowed a “lifetime” dosage of no more than 500mg. And I had 300mg back in 1990 during my fight with Breast Cancer. But I will certainly ask her about having the Gemcitabine along with the rest of the 5FU. She wants me to do 3 rounds of Taxol / Carbo before we try something else. And her reason is because she isn’t 100% positive of just what kind of cancer I DO have. Frustrating, frustrating, frustrating!
    And the diet link…. thank you! My way of thinking is, everything I put into my body at this point is going to make my liver and bile ducts and etc work that much harder, taking away from it’s concentration to fight this cancer. So it’s hard to eat and yet I know that’s a necessary thing. So I will definitely check into your link. Thank you again!
    On the Avemar, I plan to see my naturopath next week, and I’ll mention it to her and see about getting on it myself. She has me taking three other natural herbs that have been proven beneficial in stopping the tumor in my liver from growing, if not reducing it. So we’ll see what happens.
    This website is awesome! It’s been a wealth of info and support for me and my family!
    Thank you,
    Kel

    #14526
    stacie
    Member

    Kelli,

    You have a lot of good questions and I wish there were clear and concise answers to them. First off, I’m interested why your oncologist wants to start off with Taxol. The only proven chemo to work with cholangio up to this point is Gemcitabine, and 5FU seems to also work. Tricia took one dose of Taxol and immediately lost all her hair (darn it). Gemcitabine and 5FU don’t have this effect although there are some others. You may want to talk with your oncologist about his chemo choice and why. You should also be looking into Avastin and possibly Erbitux or some of the other targeted therapies on the chemo spreadsheet. They have been working for several patients on the website.

    There are several people who are looking at alternative therapies on this website but I haven’t heard specifics on anything that is working. Our naturopathic Dr. gave us some Avemar – which we had been studying and Mark will start that immediately. She has seen a couple of patients completely healed using it. She also suggested the Gerson Diet (or lifestyle) they call it. You can look it up online at http://www.gerson.org – they have a lot of very interesting stories of complete healing from all kinds of cancer on their disc – which I watched last week – especially interested in the patients that were cured from Peritoneal cancer and pancreatic cancer doing this diet. Just something to look into.

    Good luck – keep us updated.

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