• Appendix cancer

    Asked by kperera on Wednesday, December 19, 2012

    Appendix cancer

    Does anyone have suggestion on what to do? My mom (mid 60's) was diagnosed in June and they told her she had a better than 50% chance of beating it. After 6 months of chemo and two stable scan results, they are saying there is no chance for a cure, and she has 2 years with treatment (which is making her so sick and weak that she cannot do anything at all). They say she is not a candidate for the HIPEC surgery. They switched her chemo because the first one was causing her to fill up with fluid rapidly, she will do this chemo for a few months but if it doesn't work they say no are no other options. She goes to Sloan Kettering which is supposed to be the best but I can't help think there might be someone out there willing to help. Totally at a loss - she has a lot to live for and we're not ready to say goodbye.

    5 Answers from the Community

    5 answers
    • GGP's Avatar

      Hello and welcome to the site. Others will offer up some help too, but one of our active users www.whatnext.com/users/abrub had that type of cancer and can offer up some help. Also take a look at our page https://www.whatnext.com/conditions/cancer/rare-cancers/appendix-cancer on rare cancers/appendix cancer. This will get you some information to start with.

      Greg P

      almost 4 years ago
    • Peroll's Avatar

      Sounds like it may be time to get a second opinion. Since her cancer is rare you need to do some research and see who is really doing the research on Appendix cancer and seek them or someone associated with them for the secons opinion. Good Luck!!!

      almost 4 years ago
    • fastdog's Avatar

      I am 67 years old, in "average" physical condition, and had HIPEC surgery for cancer of the appendix in June 2012 and did just fine. I would be curious to know why she is not a candidate for HIPEC. If you haven't done so, please also check out the PMP Pals website (pseudomyxoma peritonei) for specialists in this area and lots of additional advice and support. They have some very helpful literature. I would certainly seek a second opinion from someone who deals in this cancer. I had surgery at U-Mass Medical Center in Worcester MA and was very pleased with the result. Whatever you do, don't give up. If there's anything you'd like to know about my experience, I would be more than glad to help.

      almost 4 years ago
    • reed4vols' Avatar

      I am wondering why surgery is not an option...you might get a second/third opinion. I have heard of many who were told one thing at a reputable institution only to find success at another. Did you speak with an appendix cancer specialist? I was told something similar at first...long term chemo options that aren't very successful, then was told about this "radical" surgery. Turns out it's the standard of care for appendix cancer! I had to travel to Wake Forest for HIPEC (twice!) but it has given me the gift of time.

      almost 4 years ago
    • abrub's Avatar

      There are excellent drs at Sloan Kettering. I go to Dr. Paty, who did my surgery, and then I had IntraPeritoneal chemo. They have to be able to surgically remove visible tumor to a couple of millimeters or smaller for IP chemo or HIPEC to be effective. Please be sure that your mother consults with one of the Appendix specialists in colorectal surgery there: Dr. Paty, Dr. Nash and Dr. Guillem are the 3 names I know. Make sure that her medical oncologist has been consulting with one of them.

      A med onc at MSK gave me a totally different treatment plan and prognosis than did Dr. Paty. I'm now 5+ years out, and doing great.

      almost 4 years ago

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