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  • #14511

    In reply to: Xeloda

    geoff
    Member

    Hi Mybro’sSis

    I believe that Capecitabine (Xeloda) is an oral version of Fluoroucil (5FU) with less side effects and obviously more convenient to take as a pill than having 5FU by IV. In 2005 the US FDA approved its use, alone, as a therapy for metastatic clorectal cancer. (It seems that drugs used for digestive tract cancers, eg CC, often start off as colorectal cancer drugs).

    But I’ve read that 5FU has been found to be much more effective (again for colorectal cancer) when combined with oxaliplatin (and presumably Capecitabine + Oxaliplatin may also be a superior combination). For example, see:

    http://www.cancer.gov/clinicaltrials/results/capecitabine0705

    You might wish to discuss this with Dave’s oncologist who may have good reasons for wanting to use Capecitabine alone.

    Geoff

    #14490
    stacie
    Member

    Geoff,

    Here are my suggestions: I’ll try to go right down your list. There are others who know more than me out there, so (others) please feel free to correct or add to what is here.

    Avastin: I think if you are doing chemo it is a must – it has boosted good results with every kind of cancer it has been tried on. Check pub med and you will find several studies/articles/peer-reviewed materials there that can help you. Also, you can go to the “Getting Avastin” area on the website – there is a post there through me from a good Dr. friend and he gives several good suggestions on getting Avastin into your regimen.

    Davanat: You can’t get it. Hopefully Caroline will keep us updated on the progress with her compassionate use request, but other than that it really isn’t available and there aren’t any peer-reviewed articles to read on it.

    Sorafenib: I think we were all hopeful that this one would do a better job with cholangio, I haven’t heard any good results from this trial – perhaps Hans knows more as he was also on the trial (which did not work for him either).

    XL119 – I have not studied this drug and so I can not speak to its efficacy but pubmed should be able to help you out there as well.

    Immunotherapy is just coming so we will all be watching this one.

    As far as alternative therapies, I will know much more about this and the direction we will be going with Mark next week. We have our appointment to lay everything out and we are very interested to see how this will go. I should tell you that one of the reports that I read said that AHCC and Avemar together were having excellent results so this is something we will be going after as well.

    Mark’s scan was yesterday and so we are patiently waiting to hear the results. If what they say is true and the amount of rash determines how well the Erbitux is working then he should be cancer free (haha). We’ll let you know.

    5FU and Xeloda are the same thing. Just in different forms. Mark is on 5FU, Avastin and Erbitux right now, he is tolerating them far better than the GemOx (Gemcitabine & Oxaliplatin with Avastin) that he was doing before – so we will see.

    Hope this is helpful, but I hope others will post as well. It is always best to have many opinions.

    Good Luck, keep us updated!
    Stacie

    geoff
    Member

    Hi everyone

    I have a CT scan this week and I’m seeing my oncologist next week and I’m trying to prepare a list of treatment options to discuss (in case my Gem-Carbo chemo is not working). At the risk of going over what for many of you is “old ground” I’d be most grateful for your comments on the following (and anything I’ve missed). I’ve read and learned a lot on this website, and done some of my own research, what I need is to summarise the situation.

    MAINSTREAM THERAPIES
    Are there any early results from clinical trials, or maybe just individual case reports, regarding the effectiveness of the drug in delaying disease progression and/or extending survival times in respect of CC or pancreatic cancer, for:

    Bevacizumab (Avastin)
    Approved in the US for colorectal cancer and apparently Caroline will get to receive it for CC. I’m not aware of any trials for CC or pancreatic. I believe the UK’s Royal Marsden hospital are conducting a trial of an alternative angeogenic drug, AZ2171, which they described to me as a “2nd generation avastin”.

    Davanat
    Not sure whether this is “mainstream”. A lot of the reports about Davanat seem to come from the developer “Pro-Pharmaceuticals” and of course they have a commercial interest to promote.

    XL119 (Becatecarin)
    There are phase-3 clinical trials under way but as far as I know these are “blind” trials so I guess results won’t be available until after the trials are completed. Not sure whether any stage-2 trials results are available.

    BAY43-9006 (Sorafenib)
    The only positive reports I’ve seen relate to kidney cancer.

    Capecitabine (Xeloda)
    A chemo drug for colorectal and breast cancer. From what I read it’s no more effective that 5FU, just more convenient (it is oral) and less side effects. Caroline reported that she tried Xeloda without any success.

    Immunotherapy
    The subject of much research worldwide and possibly the definitive cancer treatment of the future. I have seen a recently published “report of a case” from Japan where a woman with CC was treated with surgery and post-op immunotherapy and, despite lymph node metastasis, she is still alive 3.5 years later. But I have not seen any reports of wider use of this form of treatment.

    FOOD SUPPLEMENTS
    Again I’m looking for real evidence of effectiveness, which I recognise will probably not exist.

    I recently met an oncologist in UK (a specialist in cancer vaccine research) who recommended the following which he said has been shown to shrink tumours:

    Green Tea extract

    Bromelain (an enzyme derived from pinapples)

    Asprin (yes asprin!)

    In addition have seen references to:

    Active Hexose Correlated Compound (AHCC) – derived from mushrooms and the subject of an informal trial in Japan.

    Fermented wheat germ extract – I’ve just seen Stacie’s post on this, and read a couple of the references, it sounds very promising.

    Geoff

    #188

    Our father, who is 57, have been diagnosed with CC a few weeks ago. He has a Klatskin tumor, and the cancer has spread to the liver and stomach lining, wich makes an operation impossible. (Please forgive any errors in spelling, we are Norwegian so English is not our first language, and medical terms in English are new to us). I believe the cancer is stage 3, but this is not confirmed by his doctor.

    The oncologist we have talked to wants to try chemotherapy as soon as the jaundice is better. His billirubin-values is improving slowly after three stents were placed a couple of weeks ago.

    According to the oncologist the treatment wil be either a combination of Oxiliplatin and 5FU, or Gemzar.

    Avastin is not commonly used on CC in Norway, and there are currently no clinical trials. Because of this it seems like he will not be treated with Avastin. Our impression is that it is quite commonly used on CC in the US and UK. We would like to find out how common it is, and more about results of any clinical trials of Avastin on CC. Does anyone have any advice or information regarding this?

    Hilde, Stina and Ida.

    #14430

    In reply to: My Brother

    stacie
    Member

    I want to agree with the previous posts that you are in a good position if your brother was considered a surgical candidate. Now, the crucial thing for him becomes the systemic treatment with chemo.

    However, you need to give another try to get a combination chemo for him. Your best bet will be to combine gemcitabine with 5FU/Xeloda (same drug administered differently) or one of the platins (Carboplatin, Cisplatin or Oxaliplatin) there is a lot of information and studies on these drugs. Start pulling them up and work with your insurance or oncologist now to get him on some kind of combination of drugs, he will have a much better result if your oncologist will do this.

    #14022
    caroline-stoufer
    Participant

    Jules-

    I am tolerating the gemcitabine alone quite well. I feel a little queasy in my stomach at times, but I still have a good appetitie and don’t have any nausea. I do get really tired sometimes. My oncologist pointed out some things in my blood chemistry (phospates, etc.) that he said are elevated, and if they continue to go up, he wants to add another chemo drug such as Oxaliplatin (sp?) or Avastin. He said the Avastin is the one the insurance company probably won’t like and might be controversial with them. I’m guessing this is because it may be more expensive.

    I am going to talk to my oncologist more about the Davanat trial or trying to get it through “compassionate use”. To be in the trial, I’d have to be off the gemcitabine for probably one month at least and switch to 5FU or some other chemo drug. There was a post on this site about the Davanat maybe not being effective on tumors in the liver, so I want to investigate that as well. I hope to call Pro-Pharmaceuticals on Monday and then discuss Davanat with my oncologist on Tuesday. We talked on the phone about it last week, and he is receptive to looking into it further.

    Hope you and your father are doing well. Have you heard from Patricia or Mary (was that her name whose mother has CC)?

    -Caroline

    #148
    mikec
    Participant

    Hello everyone,

    As someone who has been following this company’s trials for several years I wanted to encourage everyone to visit the site of Pro-Pharmaceuticals to understand how their new “delivery system” works combat cancer.

    For those of you who are new to the site I would recommend reviewing the VIDEOS section first as I feel it will allow you to quickly grasp the concept of DAVANAT, and then proceed to their press releases as it applies to the results of their HUMAN TRIALS to date. What I think you will find will amaze you and your Doctor.

    What I think most will find amazing is that one person had their tumor reduced almost 50% in a case involving cancer of the colon, and in another case involving Cholangio Carcinoma, the person was alive 13+ months after begining treatment (they were only expected to live another 12 weeks. But please read the press releases in question.

    I am not a doctor or an employee of the company, but I am someone who has lost a number of my family members to various cancers over the years. My intent here is to spread the word that there may be hope at last.

    Regards.

    Mike C.

    #14225

    In reply to: Davanat & 5FU

    danimarc
    Participant

    Just a follow-up question. One of the previous replies said that Davanat “also has a competitive interaction with the liver. It basically coats the liver so that 5-fu cannot get in there and hurt the liver.”

    Does this mean that if you have tumors in your liver that the 5FU wouldn’t get it to them?

    I had starting looking into this clinical trial for my sister (with BDC) and a friend (with colon cancer) but both of them have tumors in their livers.

    Thanks!

    #14155

    In reply to: Intro

    clrindone
    Participant

    I was diagnosed with metastatic bile duct cancer in Sept. 2003. I was not a candidate for surgery. I had 9 months of Gemzar/ cisplatin, then after a break of a few weeks started on Zelota (5FU). I was able to stay on that for 9 months before growth in my liver tumors and lungs started. I also had a metastasis to my hip.
    My latest drug was Taxotere. It has worked well for almost a year but my doctors feel it has run it course. I was told a fourth round of Chemo usually isn’t helpful. I am looking for a trial (as are my doctors) that may be helpful to me as stopping treatment isn’t an option in my mind. My liver function is still normal and has been all along. I live in central MA near CT and only 1 1/2 hr from Boston. I have received great treatment at home and at Mass General. has anyone had any similar experiences and does anyone have any suggestions?

    #138
    stacie
    Member

    There is a new article out talking about the Phase II trial (Pro-pharmaceuticals) on Davanat and 5FU – I think Rick will post it today.

    Is anyone participating in this trial and if so can you share some information – what has been the disease progression using this regimen, what are the side effects, etc.

    #14206

    In reply to: New Diagnosis

    wamba138
    Participant

    Dear Amilcar,

    My wife has been battling stage IV cholangiocarcinoma for 13 months. The only chemo that helped her was a phase I clinical trial of XL119 and oxaliplatin. SHe has tried gemzar, taxotere, 5FU, and a combination chemo. After she was removed from the clinical trial, she rapidly got worse and her time is now very short.

    One thing you learn is that what helps one patient doesn’t work for another. Find an expert in Seattle and follow their suggestions.

    #106
    kkloss2
    Participant

    My husband Frank (age 44) was diagnosed with cholangiocarcinoma in February 2005. He underwent surgery at Columbia Presbyterian in NYC in April 2005, endured radiation and 5FU for 7 weeks, followed by Gemzar and Oxyplatin which ended in December 2005. As of February 2006 his CAT scan was clean. On April 8, 2006 his CAT scan indicated 3 areas of cancer outside the liver. He then underwent a cholangiogram that revealed areas of blockage within the liver, all diseased with cancer. He now has the drainage tube to help relieve the liver and reduce the billiruben (in the 5’s range).

    Eating solids has become extremely painful and can anyone tell us if it’s due to the liver beginning to fail and be able to break down solid food? Does anyone have suggestions after going through the same?

    Also, he will begin palliative chemo on April 18th. Does anyone have other suggestions for us to try as we are getting down to the wire for treatment?

    #14042
    kkloss2
    Participant

    Mike,
    I am so sorry to hear about the loss of your wife. My husband, Frank, was diagnosed with cc in Feb 2005. He underwent surgery (Columbia Presbyterian in NYC – Dr. Jean Emond) in April 2005, followed by radiation and 5FU, then Gemzar and Oxyplatin chemotherapys which finally ended in Dec 2005 (adjunctive treatment recommended by Sloan-Kettering – NYC and performed by Morristown Memorial – NJ). His CAT scan as of Feb 2006 was clean and as of last Saturday, the cancer has returned both inside and outside the liver. We are devastated as we know his time is limited. He has already undergone a cholangiogram which offers minor relief and will begin palliative chemo on 4/17/06. Is there anything you can recommend to make his remaining time more comfortable?

    #13709

    In reply to: Photodynamic Therapy

    ukmember
    Member

    I think the oncologist at UCH will be Dr Bridgewater. We have seen him; the usual chemo at UCH is 5FU but Dr Bridgewater is conducting a trial of gemcitabane vs Gemcitabane & Cisplatin. They offered this to my husband but he has declined all chemo.

    Re the median survival your father will find this article by Stephen Jay Gould interesting.
    http://www.cancerguide.org/median_not_msg.html
    With a rare cancer he was told the median survival was 8 months in the event he survived 20 years and died of something else. .

    The response to the PDT was fine but today he has had a lot of nausea, which he has only in mild form until now. The consultant thinks that it a delayed reaction to the treatments and I tend to think so too

    here’s hoping tomorrow will bring a more normal day.
    All the best to you and your dad,
    Patricia.

    #13990
    jules
    Participant

    caroline, i hope that you get into the trial, has sorafenib given good results in the trial so far? my dad was offered to take part in a trial here – gemcitabine and cisplatin, he has also been offered to take part in another trial for bilcap (I think this is the oral tablet for of 5fu). so far he has not made his mind up what to do, it is difficult as his surgeon did not reccomend chemo and i think that my dad is reluctant as the benefits of chemo for cc are unproven, having said that i know someone who has taken gemcitabine and cisplatin which has shrunk his tumor enough so that he is soon going to be able to have a resection – it just seems so individual.

    best wishes,
    jules

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