Discussion Board Forums Introductions! I’m at the beginning of this frightening journey.

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  • #38892
    darla
    Participant

    Snezzie,

    I have been following your posts and although I don’t have the answers as it is all so unpredictable and different for each person, but just try not to get too far ahead of yourself. Take it as it comes, one day at a time or it just gets too overwhelming. You definately are not alone. We are all here for you. Come back as often as you want or need to even if it is just to vent. I too am hoping for the best for you.

    Darla

    #38891
    snezzie
    Member

    Thank you everyone for your kindness and willingness to spend time and go into detail about your experiences.

    I felt so alone until I found this site.

    Snezzie.

    #38890
    gavin
    Moderator

    Hi Snezzie,

    Welcome to the site, although I am sorry that you had to find us all here. I can’t help you with your question regarding chemo as my dad never had that, but I wanted to join in with the others in welcoming you here.

    From what you have said, it sounds like you are doing everything that you can in seeking out more than just one doctors opinion, and coming here will I hope also help you in speaking with others who are going through this as well. I do hope that you will keep coming back here as you will get a load of support and advice from us all. So please, feel free to ask a ton of questions and I know that someone will be able to help.

    My best wishes to you,

    Gavin

    #38889
    linda-z
    Participant

    Snezzie,
    I welcome you to this site and am glad that you are here seeking information. We are also here for support and guidance should you need that. What many are saying, and I agree, that different chemos work differently on each person. Even though we really have the “same” cancer, cholangiocarcinoma, the chemos for some reason act differently on each of us.

    I also had 40% of my liver removed (left lobe) Apr 1, 2009, with 1 node involved and clear margins around node and resection. The Drs. were certain that they had everthing. I came through resection wonderrfully. However, just to be on the “safe side” as they put it, I was given Gem/Cis. I had very little side-effects, but with the Gem / Cis (I was told) you really have to watch the white blood count a lot. Mine did drop low for a few weeks, then came back up and I resumed treatment. There is also a med. that they can give you for the low count that will force your bone marrow to produce more white blood cells. If they are aware of this issue, they give it to you following the chemo. infusion.

    I just finished with a treatment of Oxalyplatin & Xeloda pills (see, yet another combination). I don’t know yet if that has been successful, but we’re hoping for a shrinkage of a recurring and new tumor and possible new surgery. I actually had more side-effects on the Oxalyplatin/Xeloda than I did on Gem/Cis, but have yet to see which one was more effective.

    Each doctor will draw their own opinion based mostly on what their past patients have experienced. If they only have patients that are on one combination that works, then that will be their opinion.

    And you need to ask what their definition of chemo “doesn’t work” is. Do they believe that chemo. would NOT shrink existing tumors thereby saying it “doesn’t work” for that reason? Or do they think that whether one had chemo or not, the tumors would eventually return (so why bother with chemo)? Or do they believe that just giving chemo for a preventative (for just in case) would not give the patient more time until a tumor returned? These are all different “it doesn’t work” instances that you could clarify with your doctors first. It might make a difference on your choices.

    It is great that you have sought many opinions, but understand that there isn’t necessarily the “right” answer. You have to try one to find out if it will work for you. One may, while another may not. We just more-or-less guess, but it is your choice to do or not to do. You need to be comfortable in whatever decision you make. One way to gain more confidence in your decision is through knowledge. Search on this site, and ask your doctors tons of questions. Ask until you know what they are talking about. Don’t accept something if you don’t know what they mean. You are entitled to understand why they say and believe certain things.

    I give you so much credit for getting out there and searching for the knowledge now. I didn’t find this site or even begin to learn about this disease until this March (almost 1 yr after my surgery). Keep on asking questions, and the best of luck to you. Come back here often and keep us informed too. We all learn from each other.

    My best to you,

    Linda Z. (sorry I get so lengthy, but hope it helps in some way)

    #38888
    marions
    Moderator

    Snezzie….To make things even more complicated….there is a clinical trial you may qualify for. I am not saying that you should or shoud not consider it, but I wanted to make you aware of it.
    Here is the link:
    http://clinicaltrials.gov/ct2/show/NCT00789958
    Marion

    #38887
    snezzie
    Member

    Thanks very much, Margaret. I’m not educated enough to know which Chemo would be best at this time.
    I’m so very glad to know that your husband is in remission.
    I wish you all the best,
    Snezzie

    #38886
    marions
    Moderator

    Sneezie…..if you are with Kaiser then they should cover a visit with UCSF. The person you would want to consult with is Dr. Venook. Also, did you see Dr. Fisher at Stanford? Hang in there…you will come up with an answer. Please, remember that experts disagree amongst each other. Different physicians may have different opinions based on their own experience with this cancer. And, continue to reach out. We are in this together.
    Best wishes,
    Marion

    #38885
    mlepp0416
    Participant

    Snezzie:

    My husband Tom had a successful liver resection in June 2008. All his doctors at that time said no chemo was necessary because he had 1 in clear margins. However in Nov 09 he started turning yellow, he had a reoccurance with a new 2.5cm tumor blocking the remaining right biliary tree. It is inoperable. All his new doctors now say that if he’d had chemo after the resection he most likely would not be in the position he is in today. He has now had 28 radiation treatements followed by chemo (Xeloda) and the tumor is dead and he is considered to be in remission.

    The good thing about Xeloda is that so far he has not lost any hair. (He said he’s grown that hair for 63 years and he’s kind of attached to it!) So he’s happy about that. The Xeloda does not make him sick, but after his 2 week on, 1 week off regeime, he’s pretty tired after the two weeks on.

    And the Xeloda that he is on is pill form, so he does not have to travel to get his chemo and that works for us.

    If I had it to do over again, I would have insisted on some form of chemo at the get go….

    Go with God and KEEP KICKIN’ THAT cancer.

    Margaret (My husband and cholangiocarcinoma)

    #38884
    snezzie
    Member

    Thank you everyone for your replies/opinions. It is helpful to me.
    Marion, I am a patient at Kaiser. The 2 Oncologists at Kaiser said “don’t do Chemo..” and the other has me on Gem/Xeloda and says to “save” the Gem/Cisplatin for recurrence.
    The 3rd Oncologist is at Stanford and said do the harsher chemo (Gem/Cis).
    The fourth Md is a retired UCSF Medical doctor who appears to be a genius and has said do the Gem/Cis because the Gem/Xeloda “won’t work”.
    The Stanford Oncologist is a GI oncologist. None of the others appear to be very familiar with this cancer.
    I think perhaps that it might be best if I see someone at MD Anderson. I have done quite a lot of research and that seems to be the place where they are most familiar with ICC.

    I am in a tizzy by not knowing which way to go–it’s been 5 1/2 months and every single day the topic is Cholangiocarcinoma….chemo…..I am so overwhelmed by it all.

    Thanks again all you kind people for replying,
    Snezzie

    #38883
    marions
    Moderator

    Hello Snezzy….As a fellow Bay Area member I would also liike to welcome you to our site. Your consultation with 4 different phsycians is admirable. You are doing your homework. I agree with what has been replied and would like to also add that patients vary with their responses to treatments. Some do better with one combination and others do better with another. In many instances the physician will change the combination according to the patient’s response. Some people do not receive adjuvant therapies and feel good about their decision whereas some have regrets of not having done so. Either way, there are no guarantees. Have you consulted with physicians “very” familiar with this cancer? That would always be the first question asked. If I may ask, where have you been treated?

    Best wishes,
    Marion

    #38882
    kathyb
    Member

    Mayo may recommend different combinations for different people. They put me on the GEM/Cis (only had one so far because of stent problems) first. Then again, I did have radiation and 24/7 5-FU chemo last fall, so I guess it wasn’t my first.
    Maybe I do have chemo brain. That’s what I call all my forgetfulness/mistakes now. Comes in handy.

    Kathy

    #38881
    rick-kamp
    Member

    Gemzar/Oxaliplatin shows fantastic results and it is less toxic than Gem/Cis. This is what Mayo Clinic recommends as a first line treatment. The Oxaliplatin is still a platin based drug like Cisplatin and is still effective in combo with Gemzar, but less side effects.

    I was on that combo for about 6 months until I started getting a rash/reaction to the Oxaliplatin.

    Rick

    #38880
    lainy
    Participant

    Dear Snezzie, Welcome to our wonderful family. To do or not to do, is such a personal decision as there is no right or wrong. My husband was told no chemo and he is a 5 year survivor of a “double” Whipple. The CC has returned now for the second time but the Docs have been able to get it out before and we are facing our second bout. He is going to be 78 and at this point said he would prefer not to have Chemo. You might want to use our Search Engine at the top and find some posts on here related to the subject. In the meantime I congratulate you on already being a survivor and hope things continue to go well for you. Please keep us posted.

    #38879
    devoncat
    Participant

    I would do chemo because I personally would want to know that I did everything possible to prevent a reoccurance.

    For me, I had the easiest time on genzar/cis. It was such an easy combo for me to take.

    Just my opinions.

    Kris

    #3636
    snezzie
    Member

    I had a 40% left lobe resection Jan. 2010.
    1 MM clear margin/ 1 lymph node involved.
    Stage III.
    No post surgical complications.
    I have just started chemo–Gemzar and Xeloda.
    I have seen 4 doctors–one said don’t do chemo, it doesn’t work. One said do Gem/Xeloda because it’s less toxic than Gem/Cisplatin. The other two said do Gem/Cisplatin because Gem/Xeloda doesn’t work.
    It’s too late for a chemo sensitivity/resistancy test.
    My head is spinning with indecision and fear of making the wrong decision.
    I am so overwhelmed and feel so beaten down.
    Would anyone please give their opinion regarding chemo?

    Thank you

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