New family adding to your group

nanny
nanny Member Posts: 2
edited March 2014 in Colorectal Cancer #1
Hi everyone,
I feel like I know some of you already as I have read through lots of your comments and postings. You all seem to be a great support group for each other and you are all so inspiring to me.

We are a new family facing this journey now. My father in law was recently diagnosed with stage IV appendiceal cancer. I am actually writing in on behalf of my mother in law "nanny" who is trying to remain very strong right now for her family. The biggest question that she has at this point is, has anyone on here had the Cytoreduction / Debulking surgery along with Hyper(something???) therapy? That is the first recommendation for him so far and she would like to talk to someone that actually has had the surgery and possibly get more information on it. Also, if this same procedure was recommended for you and you chose not to do this, what route did you go instead? Thank you so much - I am just trying to gather as much information as I can for them.

Comments

  • geotina
    geotina Member Posts: 2,111 Member
    #2
    Nanny
    Welcome to the board. I am not too familiar with the cancer you are talking about. If my understanding is correct, it is a rare cancer. I have heard of the surgery you are talking about and the Hyper (??) you mentioned is probably HIPEC, the hot chemo wash part of the surgery. If you go to the Colon Club I think there are prople on there that have had these procedures. Try googling "rare cancers" and see what comes up. There is a rare cancer board on this site and there is a thread there, some older stuff and some newer stuff, read the whole thread. If you try sending a personal message to the people that post perhaps they can be of some assistance to you. Take care - Tina
  • nanny
    nanny Member Posts: 2
    #3
    geotina said:

    Nanny
    Welcome to the board. I am not too familiar with the cancer you are talking about. If my understanding is correct, it is a rare cancer. I have heard of the surgery you are talking about and the Hyper (??) you mentioned is probably HIPEC, the hot chemo wash part of the surgery. If you go to the Colon Club I think there are prople on there that have had these procedures. Try googling "rare cancers" and see what comes up. There is a rare cancer board on this site and there is a thread there, some older stuff and some newer stuff, read the whole thread. If you try sending a personal message to the people that post perhaps they can be of some assistance to you. Take care - Tina

    Thank you Tina. I really
    Thank you Tina. I really appreciate your suggestions. You are right about this being a rare cancer. And also the HIPEC chemo wash - that is the same procedure I was talking about. Again, thanks for the suggestions - I will try them.
  • msccolon
    msccolon Member Posts: 1,917 Member
    #4
    Cytoreductive surgery with HIPEC aka IPHC
    Where is she having it done? I had the procedure done at Wake Forest in May. It's a very involved procedure so make sure the doctor proposing it has a LOT of experience performing it. The procedure itself went very well for me. I did wind up having quite a bit of infection later on, but I think it was from a combination of a weakened immune system after much prior chemo and a repaired bladder. There are a lot of people who have this done with good results.
    mary
  • abrub
    abrub Member Posts: 2,174 Member
    #5
    Appendiceal Cancer Stage 4
    I was diagnosed with Stage 4 Appendiceal Cancer in April, 2007. My drs at Memorial Sloan Kettering Cancer Center (NYC) did not do HIPEC. They did a less extreme cytoreduction, followed by intraperitoneal chemo that was not heated - multiple cycles of 3 days of infusions each. That was followed by systemic chemo. I had a very rough time, but am doing very well now, with an excellent long-term prognosis.

    I know people who have had the HIPEC procedure. It is very arduous. One of my friends had it for recurrence 5 weeks ago, and is still struggling through. Another, who had been deemed inoperable will be having it in 10 days.

    Your father in law must consult with specialists who have dealt with Appendix cancer, and learn of the options.

    There is an appendix-cancer.com website with excellent info. There is also a "rare cancers" forum on the web with threads dedicated to Appendix Cancer and the various treatments. (I'm one of the moderators for the Appendix Cancer threads).

    I can't emphasize enough how important it is that you get with someone who knows this particular cancer. It is not just an extension of colon cancer, as some drs would have you believe. It is rare and it is different.

    Good luck! We survivors are out there. If you click on my name, you'll come to my story with this. The journey is not pretty, but so far, my outcome is.

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