Discussion Board Forums Introductions! Loving son looking for something other than chemo

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  • #89042
    lulu07
    Member

    Hi Michael
    First of all i”am so sorry for the diagnosis of your Mom…..I’am a 6 year survivor of CC who knows what that means I’m still on maintenance chemo I have had 2 liver resections by Myron Schwartz …I understand she was not a candidate for surgery…we just lost someone who we went to high school with in a month and a half of diagnosis…he lived his life in the Keys and played his drums Im happy he lived his life the way he wanted too..but 58 years old is to young..I would like to give you the names of my Oncologists its not you’re usual chemo place your in a room with everyone else you share your story and every one talks we are all one! maybe I will see you and your Mom there my Dr. is Azriel Hirschfeld..he works with Dr Howard Bruckner and if you google him you will be impressed their address is 2330 Eastchester Road Bronx NY phone# is (718)732-4050 If you would like more info I will happily give you my e-mail or phone # I connected with my life saver on this website…long story..but I’m blessed he saw my intro…please reach out if I can help!

    #89041
    marions
    Moderator

    Michael….. In re: to Immunotherapy, you don’t mention genomic profiling for possible matching with a relevant targeted.
    You need to discuss with the oncologist intent of sending tumor tissue. The later should be stored in the institution where resection was performed.
    Instructions are in this link:
    http://foundationone.com/order.php#1

    download a task requisition form to be signed by the ordering physician:
    http://foundationone.com/docs/Foundatio … =196914911

    A sample with pathology report needs to be sent to:
    Foundation One
    150 Second Street
    Cambridge, Mass. 02140
    USA

    Hugs,
    Marion

    #89040
    gavin
    Moderator

    Hi Michael,

    Welcome to the site. So sorry that you had to find us all here and I am sorry to hear about your mum. But glad that you have joined us here as you will get loads of support and help from everyone. My thanks to you for sharing your mums story with us all and I know that it will be of help to many others also. You so did the right thing for your mum in pushing for further opinions and that is something that we all highly recommend.

    I can’t really add much to the chemo or not discussion but I do agree with what Lainy and Catherine have said about it being a very personal decision. What is right for one person may not be right for another so it really is hard to advise on that issue. My dad never had chemo either so I have no personal stuff to share on that. By the time they looked at chemo for him it was too risky to try so too late.

    If we can help we will, please just ask and we’ll do our best and there is so much info here on the site. Please keep coming back here and know that we are here for you.

    My best wishes to you and your mum,

    Gavin

    #89039
    middlesister1
    Moderator

    Dear Michael,

    Welcome. I am so sorry to hear fo the challenges your Mom has faced in addition to the CC. Yes, chemo can be hard on body and quality of life, so as Lainy stated, it is a very personal decision. For us, it was good for Mom since it gave her more time and we were able to follow up with other treatments. But, there were times until they got the side effects under control in which she almost decided to stop treatments. Each chemo is different and all tolerate so differently. I’m always amazed when I read about those who go for a walk or out to dinner after treatments.

    I’m sure your parents appreciate the love and support. And, very good that you are getting multiple opinions. Best wishes for you and your family; the dog bite I think topped all of why do bad things happen to good people.

    In addition to link Lainy sent you to, the search function helped me out tremendously when I first found thie site.

    Keep in touch,
    Catherine

    #89038
    lainy
    Member

    Dear Michael, I wish I didn’t have to welcome you here but am glad you found us. Welcome to the best place to be for CC support and sorry for your Mother’s roller coaster ride that no one wishes to take. You have done all the right things and especially in getting other opinions. To chemo or not is one of the biggest questions we have and it is a very personal decision but sounds like the ‘TEAM” wants to get the drainage under control first. My husband also had biliary drainage after his Whipple surgery and wore an external drainage bag.
    CC is very stubborn and unfortunately very smart and many times returns to the same place which is what happened to Teddy. May I ask how old your Mother is?
    Below is a site you may find helpful and please do keep us informed of Mom’s progress as we truly care.

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

    #11519
    michael
    Participant

    After a year of losing weight and being told she was simply “depressed”, one doctor finally suggested a cat scan for my mother and a tumor consuming 40% of her liver was found. Remarkably we were told it was nothing to worry about! Fortunately a young man on her “team” of doctors pushed for a biopsy and our lives changed. We immediately found an oncological team through a friend, because we wanted to distance ourselves from those who misdiagnosed the situation, allowing her to remain ill for so long and lose nearly a 3rd of her body weight. In Oct. of 2013 we visited Lankennau Medical Center outside of Philly. Dr. Carp resected half of her liver. Recovery was bumpy at first, but after just 3 months her appetite was back and she gained 20 lbs. Chemo was not recommended so we carried on. We were told that the cancer was gone! Life was good. Then in Nov. 2014 they found another tumor. Much smaller this time, on the non-resected portion. Oblation therapy was administered and again she was “cancer free”. Since it returned we decided to seek another opinion so we headed to Sloan Kettering. Initially Dr. Kingham pushed for a hepatic arterial infusion pump. This treatment apparently is very effect in localizing chemo on colon cancer as well as pancreatic cancer… I believe. However, much to my mother’s relief, the team agreed with the prognosis at lankenau. No chemo was needed. Still I wasn’t satisfied so I urged us to get a 3rd opinion at Johns Hopkins. Just prior to our visit mom’s latest scan from Lankenau was suspect enough to recommend a biopsy. But, just a few days later Dr. Weiss at Johns Hopkins determined that no biopsy was needed. It was cancer again. Two weeks later my mother underwent a much smaller surgery to remove the new tumor. Recovery went really well for 2 weeks. Then the wound became infected. The bile was leaking. We’ve tried pumps and the wet dry packing.. 7 weeks later its still leaking. Now both Dr. Rasheed and Dr. Weiss recommend chemo. However, not with an open wound. Frustrated we headed back to Dr. Carp outside of philly for another opinion on the wound. He was absolutely fantastic during her first surgery. He sent us to a gastroenterologist to place a stint in and drain the bile out the sphincter. Thats where we’ll be heading on Thurs. Oh, we also visited Robert Wood Johnson in New Brunswick and met with Dr. Moss. She was not a fan of chemo, at least not right now. Some doctors say chemo some don’t. Some say surgery is still possible if it returns in the right area. As I sure you all are aware, non of the statistics look good. I personally feel that chemo would be so hard on her for such a little chance of success. My mother has been through so much these past 2 years. On top of this she’s had the shingles, a mild case of melanoma (unrelated to liver cancer we were told), she was bitten by a dog requiring stitches,, and lost her mother. As of now her and my father want to do chemo. My main focus right now is to gain a better understanding of immunotherapy, as well as any doctors who administer it. I realized that there is probably a lot on this site about it (I already found a few things), but I thought I’d share a very abridged version my story first and offer any insight I can from my experience. Please don’t hesitate to ask me anything that may help guide you. Thanks you all for having me here and I wish you all the very best in your battles.

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