Another Newbie

Discussion Board Forums Introductions! Another Newbie

Viewing 15 posts - 1 through 15 (of 30 total)
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  • #73315
    lainy
    Participant

    Denise, I would try to get in to Moffitt ASAP, as CTCA does not do as much in CC treatment as some of these other Hospitals. And if Moffitt is close to you all the better. It is VERY important to be in a Center that treats it’s fair share of CC patients. As for telling your kids since they are teenagers, tell them sooner than later. I would end that conversation with how they can help. They need to feel a part of it and that they are helping. Kids are more resilient that we give them credit for and better they know then start guessing things and wondering why the family is acting ‘different’. Much good luck on getting in somewhere now for that 2nd opinion and please keep us posted!

    #73314
    scheitrumc
    Participant

    Denise,

    My personal experience with my wife’s ICC is, once the tumors get a stronghold in the liver, they grow at an alarming rate. I do support getting second opinions but know time is really of the essence. Also, my experience is both of the regional cancer centers we went for second opinions (Memorial Sloan and Fox Chase) supported the recommended treatment plan (Gem/Cis) as the first course of treatment.

    Carl

    #73313
    dboms
    Participant

    Well, we met with the oncologist today, he says that because of where the tumor is he would only suggest the chemo right now for nine weeks and then see if the tumor shrinks, there is no metz that they can see, but the tumor is pushing into the right side of the liver and that’s why they can’t operate, it has to move away from the right side so they can resect the left.

    We are trying to get to cancer treatment center of America, but they have not gotten approval from insurance yet….man that really ticked me off….I’m fighting for my life and your worried about freakin’ insurance, are you kidding me???? Mayo wants to start chemo asap, but I really wanted to seek another opinion first, but don’t want to delay treatment unnecessarily. I have three kids, all teenagers, my 15 year old daughter lives full time with me and I had to tell her about the diagnosis, we cried and she and I and her stepdad had a nice evening joking around and trying to forget this stuff for a few minutes. My other two kids are with their dad and I’m dreading telling them. My oldest son had leukemia when he was 4, so he is not going to take this well. My youngest won’t really get it, I hope to tell them in the next couple of days. Any advise on that would be appreciated.

    So, sorry I’m rambling, but now I’m considering Moffitt, since it is close to me, but I’m afraid that they will say the same thing that Mayo is saying and then we wasted precious time. What do y’all think????

    #73312
    marions
    Moderator

    Denise….I agree with Lainy in that you now know what it is you are dealing with. To me, this means that half the battle is won. Denise, our Percy compiled a listing of chemo agents pertaining to this disease:
    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=7843

    Gemcitabine/Cisplatin has now become the standard regimen for cholangiocarcinoma followed by alternatives, but most are Gemcitabine based with an aded agent.

    Have a safe trip back and please keep us posted. We are in this together.
    Hugs,
    Marion

    #73311
    lainy
    Participant

    Dear Denise, on one hand I am sorry about the DX but on the other hand you can now began the fight and you know what has to be done. Like my Teddy used to say, “Now we know what’s wrong, let’s fix it!” Not sure about the Chemo Cocktail, every ONC has diff ideas and every patient reacts diff to diff chemo. Sending you my best and hoping you get in to Mayo Tuesday! Keep up with your wonderful attitude as it will get you far.

    #73310
    dboms
    Participant

    We got the call from the surgeon at Mayo yesterday, it is indeed choangiocarcinoma. Hopefully, we will see an oncologist at Mayo Tuesday if they can get us in. Chemo and radiation is first up to try to shrink it before surgery can be done. Even then he said that if it didn’t shrink in the right place, i.e. away from the portal vein it would remain inoperable. So what’s the chemo of choice? I’m ready to get it on!

    #73309
    marions
    Moderator

    Denise….I have learned that segmental resection and wedge excision of the portal are difficult to perform and that it is in fact quite controversial.
    Here are some links:
    http://www.ncbi.nlm.nih.gov/pubmed/11174708
    http://www.ncbi.nlm.nih.gov/pubmed/21775914

    As far as I know, in most instances, the radiologist will perform the biopsy.

    Make sure to have copies of everything because you would want the opinion from a “very aggressive” and “very experienced” surgeon(s.)

    Hugs,
    Marion

    #73308
    dboms
    Participant

    They said that I am not a candidate for transplant. I’m not sure why? Of course we thought of all kinds of questions after the fact. Like, if the tumor is around the portal vein, why not take it all out and just do a bypass vein, it’s done all the time with aorta and other coronary arteries. Who will be doing the biopsy? Is the surgeon I saw or some guy in special procedures?

    #73307
    dboms
    Participant

    They said that I am not a candidate for transplant. I’m not sure why?

    #73306
    Eli
    Participant

    Hi Denise,

    Ask Mayo doctors about transplant option before doing needle biopsy.

    I heard that needle biopsy may disqualify the patient from receiving the transplant, because of the risk you mentioned (spilled cells).

    Mayo is the leading transplant center. I’m sure they know what they are doing, but I thought I’d mention this anyway.

    #73305
    marions
    Moderator
    #73302
    pamela
    Participant

    Hi Denise,

    I would like to welcome you to this site. Good luck with your needle biopsy. Make sure they numb it up well. My daughter had two of them. The first time really hurt so she made sure the second time that they really numbed her well and she didn’t feel a thing. Bless you and wishing you all the best.

    -Pam

    #73301
    marions
    Moderator

    Hmmm…Denise, so sorry. I know that work is in process for the updated website. Wondering whether that is the problem? I will try to find other links for you. Good luck with the biopsy, dear Deniese. Please keep us posted.
    Hugs,
    Marion

    #73300
    marions
    Moderator

    Hmmm…Denise, so sorry. I know that work is in process for the updated website. Wondering whether that is the problem? I will try to find other links for you. Good luck with the biopsy, dear Deniese. Please keep us posted.
    Hugs,
    Marion

    #73299
    lainy
    Participant

    Dear Denise I want to wish you good luck tomorrow. What ever it is at least you will then have a plan in place and can get on with it, what ever it is! Don’t you just love ‘their’ dialog. You are ATYPICAL, what? Well I think you are a lovely woman and not typical at all! Wishing you the very best for tomorrow and I know you will give us a report. You go girl!

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