Mom newly diagnosed with Stage IVa CC

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  • June 22, 2015 at 6:55 pm #88666
    dlclo
    Member

    rarebreed15,

    Sorry to hear about your diagnosis as well.

    My Mom just started chemo on the 18th. She’s getting Gemzar and Carboplatin and is on a three week cycle like you. The original treatment was supposed to be Gemzar and Cisplatin, but her kidney function is not the best. Carboplatin is not quite as harsh as Cisplatin. We are hoping that her blood work will improve and she can get the Cisplatin in the future. Kidney function could be low due to the dyes used for her CT scan a few weeks ago.

    Much like you, my hope is the chemo will shrink things up, prevent further metastasis and provide long term results with a good quality of life.

    I am glad to hear that you are staying positive and thinking about the future. Best of luck to you and I hope your treatment and the clinical trial beat the snot out of that cancer.

    Donna

    June 21, 2015 at 8:09 pm #88665
    rarebreed15
    Member

    sorry about your mom, I was just diagnosed as well, stage IV due to a spot on my spine. I’m not a candidate for transplant/or any type of surgery. I entered a clinical trial at Sloan . MEK 162 inhibitors along with GEM/CIS chemo…just started the pills this past week…getting my first chemo this Wed. Will get chemo once a week for 2 weeks and off a week…I don’t take the pills two days before and day of chemo. Hoping all this will shrink the mass and contain it. I’m hoping for the best.

    A friend of mine gave me a book that I just started reading : There’s No Place Like Hope/ A guide to beating cancer in mind-sized bites.

    I’m staying positive, for myself family and friends. Looking to have as much fun for as long as I can.

    Good luck with everything!

    June 15, 2015 at 9:09 pm #88664
    kvolland
    Spectator

    Donna –
    I read where it says that it’s a Klatskin tumor. That is what my husband had. It was mostly in the left branch with some infiltration into the right plus it was in the lymph system with two nods positive and perineural infiltration (running along the nerves). He was able to have surgery….14 hours of surgery but he survived it. I would make sure that you have several surgical opinions since some surgeons are willing to do it when others aren’t. And also remember that chemo can shrink things.
    Other than that just keeping plugging away at it.

    KrisV

    June 15, 2015 at 12:23 pm #88663
    dlclo
    Member

    Dear jelizpar,

    Unfortunately my mother is not a candidate for surgery. Her tumor is at the fork in the biliary tree (Klatskin). It involves both the left and right hepatic ducts and is in the liver as well as a periportal lymph node.

    Catherine,
    I am so happy to hear you took a vacation with your Mom and hope you both had a wonderful time.

    Regards,
    Donna

    June 15, 2015 at 2:07 am #88662
    middlesister1
    Moderator

    Dear Donna,

    Welcome to the family. It took me a few days to chime in since I have been on vacation with my Mom. She was diagnosed in Oct 2013 and since they couldn’t remove the tumor, we were told she had 6 months to a year. Although there are so many heart breaking stories, there also is hope.

    She first had Gem/Cis and then SIRT (radiation). As others will point out, it is so important to be at a hospital that is familiar with CC. Mom’s case was presented at the “tumor board” and it was the interventional radiologist who treated my mother and got us to the point we are at.

    Keep in touch- we all wish the best for your mom,

    Catherine

    June 14, 2015 at 1:29 pm #88661
    jelizpar
    Member

    Dear Donna: I am so sorry to hear about your mother. My husband was diagnosed with Stage IVcc as well. He was told told that his form of cc was inoperable by a highly reputable hospital in Los Angeles, California. However, I would not take no for an answer. I did my research very thoroughly and literally googled operations and surgeries on his specific type of tumor. I found a physician who had performed surgery successfully many times on his tumor and contacted him. He agreed to look at my husbands case and determined that he could in fact take the case. But even better, he was able to refer me to a surgeon locally in Los Angeles at USC that was able to perform the surgery. Long story short, my husband had liver resection surgery that extended his life.

    Again, long story short – You may want to consider second and third opinions even if you are at a highly reputable institution. Its just a suggestion, but do your research and don’t give up. You never know what information you may determine.

    June 13, 2015 at 6:55 pm #88660
    kvolland
    Spectator

    Dear Donna –
    Welcome to the family. Sorry you had to join us but you will find us to be a great source of information.
    You are right Gem/Cis is the first line for this. My husband did Gem/Oxaliplatin but then Ox and Cis are in the same family. Should be fairly well tolerated.
    Also you mentioned that you saw a lot of bad news related to this cancer. I would suggest looking at this post and see all the good stories….even those with stage iv inoperable that have survived for a long time with their disease.

    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=8883

    Good Luck and Keep us posted.
    KrisV

    June 13, 2015 at 5:43 pm #88659
    lainy
    Spectator

    Dear Donna, your Mom is at 2 good Hospitals! Thanks for that and will keep fingers crossed for a successful treatment. Yes, GEM/CIS seems to be the first line of treatment and works well for many patients. Try to take each day at a time and please do keep us updated.

    June 13, 2015 at 4:51 pm #88658
    dlclo
    Member

    I would like to thank everyone for their genuine concern and support. My mother is stage IVa and is being treated at Yale New Haven Hospital and Dana Farber. She is having a port put in on Wednesday and chemo will start on Thursday. The regimen will include Gemcitabine and Cisplatin. From what I have read so far these seem to be the drugs of choice. Fingers crossed she will tolerate things well.

    My best to all,
    Donna

    June 12, 2015 at 6:24 pm #88657
    gavin
    Moderator

    Hi to you as well Stacey!

    Why don’t you start your own thread in this part of the site as that way I so know that you will get a lot more responses to you? Please tell us about your brother in law and looking forward to hearing from you as well!

    My best to you and your BIL,

    Gavin

    June 12, 2015 at 6:22 pm #88656
    gavin
    Moderator

    Hi DLCLO,

    Welcome to the site. Sorry that you had to find us all here and sorry also to hear about your mum. But glad that you’ve joined inw ith us here as you are def in the best place for support and help and will get a load of both from everyone here.

    Thanks for sharing about your mum and please let us know how things go with the meeting with the onc today. Yes learn as much as you can about CC as this will so help you in being informed and in a better position to help your mum with everything to do with all of this. And if we can help with stuff we will, ask and we will do what we can to help.

    Have you checked out the great chemo board that we have here on the site? There is a ton of info posted on that part of the site regarding chemo, experiences etc and you will learn a lot there. It can be found here –

    http://www.cholangiocarcinoma.org/punbb/viewforum.php?id=16

    I hope that you will keep coming back here. You are not alone in this now, we are here with you.

    My best to you and your mum,

    Gavin

    June 12, 2015 at 4:28 pm #88655
    lainy
    Spectator

    Dear DLCLO, Welcome to the best place to be for CC support but sorry you had to find us. You are right on to read and learn as knowledge is the best tool we have to fight CC. May I ask at what stage Mom is and where she is bring treated? Below is a site you may find very helpful.

    http://cholangiocarcinoma.org/newly-dx/

    Please keep us in your loop about Mom’s progress we are all here for you.

    June 12, 2015 at 3:55 pm #88654
    stacey
    Member

    So sorry to about your Mother. My brother in law was recently diagnosed with Intrahepatic CC.
    I have found this foundation site to be very informative.
    I am attaching a post from DukeNukem that I found very helpful. Good Luck.
    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=12321

    June 12, 2015 at 1:17 pm #11387
    dlclo
    Member

    Hello, my Mother was just diagnosed with stage IVa inoperable intrahepatic cholangiocarcinoma. The oncologist is recommending chemo at this time. While I know the prognosis is not good I am hopeful that with treatment she will be comfortable and happy for as long as possible. We have an appointment today to discuss the treatment plan and side effects. From what I have read online it seems that CC can be a bit tricky to treat. Being a rare cancer there is not a whole lot of information out there. And what I do find is not too encouraging. Any websites I can be directed to, or information on how others respond to chemo, would be greatly appreciated. At this point I am just trying to glean as much as I can from families that have more experience with this particular cancer then I do.

    Thank you all

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