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    In reply to: Gem Cis Combo Working


    Hello, Pearland.

    I am also being treated with gemcitabine and cisplatin. I get my infusion every 3 weeks. In addition, I take Tarceva (erlotinib) every day. I have had 4 infusions so far. My recent scan showed stabilization; no growth. I am feeling great, and have absolutely no side effects from any of these drugs. I hope you continue to do well.

    Violarob in Texas


    My loved one, diagnosed with cc, has undergone one regimen of Gemcitabine+Cisplatin combo. To our relief, the tumors are finally shrinking a bit. (Other treatments have failed and the tumors had been growing.)

    It’s a relief that something is actually working now. I wanted to share this news, as I know how we all cling to any good news we can get our hands on with cholangiocarcinoma. Any good news is uplifting!


    Dear Stacie,
    I did reply to Prof.L and my husband Anthony and I are very keen to see big improvements in care for patients with cc in the UK. A few key points might be worth stressing:
    * patients are given different advice and treatment according to which area of the UK they live in e.g. some are told to have no treatments at all whereas others are advised to start chemo straight away. Some are monitored carefully with regular blood tests and scans, others are not.
    * it is very difficult to find out where to go for treatment, for example, we have recently discovered that there is an NHS trial at Christie’s and Hammersmith of gemcitabine/cisplatin but we didn’t know about this when my husband needed it.
    * many oncologists in the UK seem to be very anti radiation treatment and this means patients rarely get offered it even if they really want it. If you decide you want to try radiation because you have done your research, for example, on the work of the Mayo Clinic it is then extremely difficult to find a hospital willing to do it. They do exist but there is no information available about who does what and it may take you several months of stress to find it. We even heard of a young patient who travelled to Canada for radiation treatment because he couldn’t find it here. (Our experiences in searching for different treatments and finding them actually led us to want to try to help others in our situation and this is why I first started posting on this site).
    * as this is a rare cancer it feels as though patients and their families have to do a lot of the hard work themselves, both in terms of research and in finding treatments. When you do locate the treatment you want you can find yourself attending several different hospitals which is clearly not ideal as no one has a complete over view of the patient. What we feel we haven’t had is some one saying ” OK here is the plan – we’ll try chemo and then next we’ll try such and such ” The patient perspective in our experience is one of having to be very pro active and having to push for every thing at every stage.
    *Due to the rarity of the cancer and its poor outcomes for patients there is very limited research going on in the UK and therefore we seem to be very slow to be given access to new treatments compared, for example, to patients in the USA and other European countries.
    In conclusion it would seem that having specialist centres for cc would enable patients to
    1. Access a variety of relevant treatments more easily than is currently the case with a consultant who has a complete over view of their case.
    2. Attend one hospital with consultants who would have ever increasing expertise and experience with this cancer.
    3. Experience less stress and be able to concentrate more on getting better than on getting treatment .
    It would enable doctors to
    1. Establish a set of common procedures for patients from which datailed individual patient plans can be developed.
    2. Undertake some research into this cancer to further develop plans for patients.
    3. Link up with the other centres to pool experiences and results.
    4. Develop expertise in and an over view of what really works for patients with this cancer.

    I hope this information is useful and Anthony and I are really looking forward to hearing about the outcome of this.

    Thanks for taking this issue on board. I am very willing to be involved in whatever way I can in improving things for patients with this disease.
    Pauline Roberts


    Dear Professor L,
    I have written several posts on this site about the problems of finding treatments for cholangiocarcinoma in the UK and my husband, Anthony, and I are very pleased to read your message. Since he was diagnosed a year ago we have spent many hours on the internet researching the disease and then have spent many more hours trying to find out where the different treatments are available in the UK. My husband was keen to try treatments that aimed at reducing the tumour with a view to surgery if this became possible. We read a lot about the pioneering work of the Mayo Clinic and other centres in the States and decided to try to get radiation treatment when 6 months of gemcitabine/cisplatin failed to reduce the tumour.
    Our experience was that it was very difficult to find out who would do this in the UK. We nearly travelled to the mayo clinic but after several months of telephone calls and e mails we found a doctor at Barts who was prepared to do it. Our experience was that it is a complete mine field trying to find out who does what and where and even the consultants don’t seem to know. All this really added great stress to an already very stressful situation. It did’t seem necessary that we had to spend so much energy simply trying to find treatments that already exist and are offered on the NHS. I was desperate for some kind of list of available treatments for this cancer but soon realised that it doesn’t exist.
    I came onto this site to try to help other UK patients by saving them time if they were trying to search for some of these treatments. I would certainly be very keen to communicate with anyone in the Department of Health with a view to improving this situation.
    Anthony and I think that centres for patients with this disease providing all the various treatments( chemo/PDT/external and internal radiation/embolisation/surgery) would be useful but probably even more important to all patients in whatever area of the UK would be clear information on where the different treatments are available so that everyone gets the same chance to access them if they want to and if they are suitable for them. I look forward to further communication with you on this issue.
    With thanks,
    Pauline Roberts


    Did any of you experience fluid build-up in mainly the abdomen, and extremities (ankles) after chemo treatment? This is after gemcitabine + cisplatin combo.
    My loved one did not have this ascites (not sure if she is diagnosed with “ascites” yet, but definitely has serious fluid build-up) before her chemo treatment and now does.
    I’m wondering if any of you experienced this just due to your cholangiocarcinoma, or if you experienced this post treatment with gem/cis.

    Thank you for your feedback…


    Great news, Jeff!!! So glad for you.

    My wife, Lana had CT scan Wednesday. Tumor or her liver has not increased in size. A few spots on her lungs have reappeared. So, after five rounds of gemcitabine (which she did not tolerate well at all) and six rounds of oxaliplatin, the doc decided to change the treatment to cisplatin along with a smaller dose od gemcitabine. He also set us us for an interview for a clinical trial at the Indiana University Medical Center.

    Anyway … that’s wonderful news from you.



    Does anyone prefer one combo over the other? Let me know of any positive experiences.
    My family member will start the Gem/Cis combo soon. I’m not sure why not Oxali, as I’ve heard there are fewer side effects?


    I wanted to second what Ron wrote. My mom was received Gemcitabine/Cisplatin for about 6 weeks and experienced continuous pain in her side and rib area during treatment and for months after. We were told that there is always a possibility that the shots they give you to boost your bone marrow can create bone spurts; thus, pain appears suddenly.

    When that logic didn’t apply to her pain any longer, we felt convinced it was mets to her bones. Lo and behold, a bone scan showed some small fractures in her ribs (she has osteoporosis) that were NOT caused by mets. And she also experienced back pain that eventually subsided.

    I hope some of this can ease your mind until you know for sure.



    In reply to: Feet Pain


    My mom was on Xeloda, Gemcitabine and Cisplatin (though not at the same time!) and experienced this with each regimen.

    It helped to wear thickly padded socks or slippers when she walked. Her feet looked swollen and red, as well, which were side effects of the treatment for her. Basically, we had to wait it out, as it got better a few days after her chemo was administered. If it becomes unbearable and does not improve, you could always discuss reducing the dosage to make it more tolerable.

    I know this is not great advice…I hope she feels better soon!



    My sister has just recently been diagnosed with cholangiocarcinoma. As you can imagine we are all completely devastated by this news. She is in her early forties and has two young children. She has been informed that surgery is not an option as it has spread to the nearby lymph nodes although there is no evidence to suggest it has spread further than this. She is due to start chemo with Cisplatin and Gemcitabine very soon. Iam desperately searching for anything postive on this treatment. She has everything to live for and we simply don’t want to be without her. Any positive news from anybody would be welcomed.

    Thank you to you all.


    Dear Joyce and Jeff,
    Thank you so much for your kind massages, I cannot tell you how much it means that complete strangers care enough to offer comfort. My husband has a CT scan on Friday this week and we will see the consultant on Tuesday to discuss the results. We will keep an open mind and I will also bear in mind your experiences. The consultant is great he is letting my husband make up his own mind and not pushing chemo at the moment, but if he does suggest it might be a good thing, we will be guided by him. I think he said he would start on Gemcitabine first as this is best tolerated but if that didnt work he may add oxiplatin or cisplatin. I asked Ray if he wanted to do anything while he was still well and he said that he had done everything he wanted to do, just would have liked to do more of the same. He has three beautiful daughters and thre lovely grandchildern so he says he has left his legacy to the world!
    Many thanks


    She is doing much better. It has taken her about a month to feel more back to normal since her last chemo treatment. She actually is on vacation in Montreal for an entire month which is a tiny victory for her (she’s an avid traveler). She’s close to your mother in law’s age; will be turning 61 in January.

    She was on Xeloda for six weeks earlier this summer and took a six week break. She began a 7 week cycle of Gemcitabine/Cisplatin, which ended in late September. That is an incredibly taxing regimen but her scan showed marked improvement…no visible cancer in her lymph nodes, with an 8 mm. “fuzzy area” on her lungs. She is having a follow-up scan to check on that at the end of this month, as it could just be inflammation.

    Basically, chemo was the right choice for her, as her tumors significantly shrunk. It’s definitely not an easy choice to make but it has worked thus far. Just wanted you to know we were given a VERY bleak outlook and (knock on wood) she has come a long way since then. Always have hope!



    Hello Everyone,

    I haven’t written in awhile. My Mom (Stage IV exterhepatic..mets to liver and lungs..03/2006…four metal stents in common bile duct) has been fighting this cancer like a true champion. For the most part, she has done very well. It wasn’t until the end of sept. that things changed pretty fast and not for the good. That’s when we found out the Xeloda she was on did not work….but also her cancer spread to her right pelvic bone. She had two weeks of radiation to her pelvic bone. In the meantime, her symptoms worsened. She started having severe right side/chest pains. Her lungs were filling with fluid. She had a procedure to drain the fluid. They did this in two spots in her back. Thankfully, the fluid came back negative for cancer. It was the biliary system producing excess liquid. The procedure helped her breathe a little better, however she is on oxgyen as needed. She uses it at night and sometimes during the day. That procedure happened on a Tuesday, the next day she had another procedure to drain her bile externally…for they could not put another internal stent in. This is when we discovered that her biliary system was the worse the doctors at University Hospitals in Cleveland have ever seen. Side note…they have been amazing caring for my Mom and our family!! They are fighting just as hard as she is!
    She has an externally drainage bag that is draining her bile. She is also on oxycotin, percocet, cirpo, ursodyiol (sp), along with some other meds to help.
    Her doctors informed us that her cancer has reached a new stage…one of rapid growth! Since, having her bile drain externally they were able to give her gemcitabine with a little cisplatin. She has been on this before and it worked. So we are hoping and praying to God that it will work this time as well. Her doctor doesn’t want to put her on something new b/c her body wouldn’t be able to handle the side effects…plus her bili is still pretty high.
    Next week they are planning on doing another procedure to hopefully drain the bile internally as well as externally. She went for some pics this week and we found out that her biliary system is decompressing..so hopefully with the chemo and time the dr. will be able to bypass the bile to her bowel.
    I’m sorry I talked for so long. It has been a hard couple of months. My Mom just turned 54. I am 29. My brother is 25. My husband and I just had our 2 wedding anniversary. More importantly, we have a 7 month old daughter named Lily. She is the first grandchild on both sides. AKA…my Mom’s best medicine and sunshine on her toughest days!!! A TRUE GIFT FROM GOD!!!!
    My Mom, Patricia, has never complained or asked why. She takes everyday as a gift and loves God and her family so much!! She has and will always be my inspiration for everything I do in life…and I get to call her MOM!!
    Thank you everyone for listening to me…I hope I can help one if not more people with this cancer.
    Love and Happiness to all…Alison


    In reply to: Resection Successful



    that is great to hear that you found a surgeon who was willing to help – I have always said to people keep going until you find a surgeon who will operate. We consulted with yuman fong at sloan kettering – he was willing to operate on my dad although he said that he knew an excellent surgeon here in the UK – as it happened we went to the surgeon (peter lodge) here and he was brillliant. My dad’s cancer did return but i think that was because it was at a very late stage. the surgery did help in that my dad never experienced pain throughout his illness and i think that this was because the huge tumor in his liver was removed.

    I understand your concerns re chemo – I had always though that it was better to go for a combination chemo, my dad had gemcitabine and carboplatin which was effective however it was very harsh – it hammered his bone marrow, his platelets and hb levels never really recovered and this caused alot of problems for us to manage. It is so hard to make these decisons though, as some patients can cope with platinum drugs (cisplatin, carboplatin and oxylplatin) very well. It really is an individual thing.

    after my dad’s surgery we were told that chemo was unproven in terms of benefits and with that we should wait – if the cancer reared its ugly head we might want to think about it later on… in hindsight I wish my dad had adjuvant chemo as it might have just killed off those stray cancer cells before they had chance to establish themselves. I also wish that he had been given radiation. I wish we had slung everything at it and not just gone for the ‘wait and see’ option…I think that you will find that alot of people whose cancer did return after resection might say the same.

    But then you have the decision of which drug(s) to go for – when it comes to answering this question I would start with the excellent chemo worksheets on this website (I think they are still there) print it off, take it to the onc meetings and also do some research on current trials and ask your onc about promising early results, an experimental treatment maybe a better option..

    wishing your friend a speedy recovery from the surgery and all the best for the future,


    Oh charlene, how I feel for you. I totally understand your anxiety and your fears. I wish I could be there right now, I would give you a big hug. We are here for you. Just come here and vent, we all understand.

    You need to keep strong and armed with information to fight this beast, you will find strength you never knew you had.

    My Dad had a couple of courses of Gemcitabine and carboplatin. Carboplatin is less harsh then cisplatin and just as effective. These drugs are platinum based chemos, cisplatin is 1st generation, carboplatin 2nd generation and oxylplatin is 3rd generation – 3rd generation being newer, and I think it is correct to say superior. All these platinum chemos hammer the bone marrow and can effect platelet and heamoglobin levels. Chemo is cumulative, it is not really possible to predict how many courses your husband may be able to tolerate/need and side effects/responses vary. It really is an individual thing. One thing is certain – combination chemo such as this one is more effective then gemcitabine alone (I can refer to data released from the abc 02 trial here in the UK to support this).

    I trust that your husband has been surgically assessed, have you sought more then 2 or 3 surgical opinions? – there are surgeons out there who do take on ‘hopeless’ cases. (As in my Dad’s case – his resection certainly bought us more time and can be curative if good margins are acheived). Get your husbands scans on disc and fire them off to some of the best people for an opinion.

    It sounds as though your husband has lymph node involvement and this could be why surgery has not been considered an option. However, I have read articles that state that lymph node involvement should not rule out a resection as a resection can also be carried out for palliative reasons.

    Charlene, hang on in there. Alot of people have very positive responses to chemo and maintain a good quality of life. (See Caroline Stoufer’s blog on this site – a perfect example). Please keep in touch and remember that we are here for you.

    take care, Jules

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