Peritoneal Chemotherapy- Anyone gone through this?

DebPJ
DebPJ Member Posts: 6
edited March 2014 in Colorectal Cancer #1
Hi, my husband ws just diagnosed with stage IV Colon cancer two weeks ago. He had surgery to remove the tumor and we were informed that while the cancer had not spread to other organs, it had spread to most of his lymph nodes and to his peritoneal cavity. We are researching a surgical chemotherapy procedure that he may be a candidate for but we want to find out if there are others who had experienced this procedure and hear what they have to say about it. This is a really scary diagnosis as my husband is only 46 years old. His sister was diagnosed with stage IV colorectal cancer at the age of 41 - that was 13 years ago, so we are hopeful and VERY prayerful. Please, if there's anyone out there who can tell us their experiences so that we have some idea of what to expect, I would really appreciate hearing from you.

Debbie

Comments

  • abrub
    abrub Member Posts: 2,174 Member
    #2
    IP chemo
    I had IP chemo, but not the heated procedure that many here have had. Mine was for stage 4 Appendix cancer, but used the same chemo as for colon cancer. I was treated at Memorial Sloan Kettering in NYC, where they do not do the heated.

    Are you looking into the HIPEC, or straight IP? The experiences are quite different.
  • DebPJ
    DebPJ Member Posts: 6
    #3
    abrub said:

    IP chemo
    I had IP chemo, but not the heated procedure that many here have had. Mine was for stage 4 Appendix cancer, but used the same chemo as for colon cancer. I was treated at Memorial Sloan Kettering in NYC, where they do not do the heated.

    Are you looking into the HIPEC, or straight IP? The experiences are quite different.

    The oncologists we're getting a 2nd opinion from are ...
    considering HIPEC.

    If you don't mind my asking, how long ago did you have this done? From what I hear, the heated is relatively new, like maybe the last 2 or 3 years.
  • geotina
    geotina Member Posts: 2,111 Member
    #4
    HIPEC
    I think you are talking about HIPEC procedure. You can google it.

    If you look up one of our members, Crow71 is his sign in name, he recently had this done along with some other surgery at the same time. Perhaps he can shed some light on it for you if you send him a PM. Additionally, I think some members of the Colon Club have had this procedure, that is another site you can check for patient experiences. Not all hospitals do this procedure. I think Roger had his done at Wake Forest.

    Also, in the search box if you put in HIPEC you will come up with lots of discussions on this topic and you can see who had it and where it was done.


    Take care - Tina
  • DebPJ
    DebPJ Member Posts: 6
    #5
    geotina said:

    HIPEC
    I think you are talking about HIPEC procedure. You can google it.

    If you look up one of our members, Crow71 is his sign in name, he recently had this done along with some other surgery at the same time. Perhaps he can shed some light on it for you if you send him a PM. Additionally, I think some members of the Colon Club have had this procedure, that is another site you can check for patient experiences. Not all hospitals do this procedure. I think Roger had his done at Wake Forest.

    Also, in the search box if you put in HIPEC you will come up with lots of discussions on this topic and you can see who had it and where it was done.


    Take care - Tina

    thankyouthankyouthankyou!!
    thankyou!

    Debbie
  • abrub
    abrub Member Posts: 2,174 Member
    #6
    DebPJ said:

    The oncologists we're getting a 2nd opinion from are ...
    considering HIPEC.

    If you don't mind my asking, how long ago did you have this done? From what I hear, the heated is relatively new, like maybe the last 2 or 3 years.

    2007
    I had my IP chemo done in 2007 - treatments July through November. They've been doing the HIPEC for Appendix cancer for a while, at least 5-10 years. I didn't realize that they were now doing it for colon cancer as well.

    There is a fair amount of research on it, at least for Appendix cancer. My dr didn't see an advantage to that over straight IP chemo in my case. You need to find out why they are recommending it.

    I needed IP chemo because my cancer was seeded all over the peritoneum, from my appendix cancer bursting. It is direct chemo onto the surfaces which were affected. In my case, the IP chemo was more important than the systemic (Folfox + Avastin) which I also had.

    I am now NED, hopefully permanently so.
  • snommintj
    snommintj Member Posts: 601
    #7
    DebPJ said:

    thankyouthankyouthankyou!!
    thankyou!

    Debbie

    HIPEC
    From what I've read and seen it is risky, but if you make it through, it can be pretty effective.
  • msccolon
    msccolon Member Posts: 1,917 Member
    #8
    I had HIPEC with cytoreductive surgery
    one year ago. It wasn't the most fun I've had in my life, and I wound up with much infection and am left with a ventral hernia. Many thought I wasn't going to make it, but here I am. I had mine done at Wake Forest, Dr. Levine as head of my team. Roger had his done same hospital, with Dr. Shen as his lead. He has also had some infection and I am sure he will post here soon. Definitely take a good look at this procedure and it's possible risks vs the possible help it can provide; it's one of those things you really need to be informed about before heading in. Good luck with making your decision!
    mary
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    #9
    Hi Debbie
    You can also google Dr. Sugarbaker and HIPEC. Dr. Sugarbaker is one of (or is) the original doc who came up with this surgery. Jenhopesprays had this surgery and she is doing well. She is on the colon club site. Also Dr. Lenz just wrote about this on his C3 blog. I added a link to his log about 2 weeks ago. I will try to find it and bump it up.

    Aloha,
    Kathleen
  • fozzie02
    fozzie02 Member Posts: 4
    #10
    HIPEC
    There is a growing number of hospitals/doctors that is doing this procedure...involves a pretty big operation to remove all visible cancer from peritoneal cavity and colon/pelvic area. You cannot have any metasteses to other organs, or you will not be a good candidate. You can see an actual operation on line google Dr Nassan at U. Of Maryland hospital...it's gruesome, but shows how this can work for some sufferers of this deadly disease. The operation is followed by heated chemo being pumped through your abdomen for 90 minutes. Google HIPEC, you will get a wealth of info. Note: there are some groups who poohoo the procedure, but fewer all the time. It's approved by Medicare, so it's not experimental,,,I'm going to have it next week in NY
  • fozzie02
    fozzie02 Member Posts: 4
    #11
    Kathleen808 said:

    Hi Debbie
    You can also google Dr. Sugarbaker and HIPEC. Dr. Sugarbaker is one of (or is) the original doc who came up with this surgery. Jenhopesprays had this surgery and she is doing well. She is on the colon club site. Also Dr. Lenz just wrote about this on his C3 blog. I added a link to his log about 2 weeks ago. I will try to find it and bump it up.

    Aloha,
    Kathleen

    HIPEC and dr Sugarbaker
    Yes, Sugarbaker is known worldwide as the "father of HIPEC- Carousel method". He does the OPEN carousel method which few others in the US do. Just about everyone else uses the "closed method" because mitomycin C the chemo agent is very toxic to hospital staff. Many docs are ramping up their Hospitals to accommodate the growing need for this potentially great procedure...If you want to know more, I can lead you to a doc in your area
  • fozzie02
    fozzie02 Member Posts: 4
    #12
    msccolon said:

    I had HIPEC with cytoreductive surgery
    one year ago. It wasn't the most fun I've had in my life, and I wound up with much infection and am left with a ventral hernia. Many thought I wasn't going to make it, but here I am. I had mine done at Wake Forest, Dr. Levine as head of my team. Roger had his done same hospital, with Dr. Shen as his lead. He has also had some infection and I am sure he will post here soon. Definitely take a good look at this procedure and it's possible risks vs the possible help it can provide; it's one of those things you really need to be informed about before heading in. Good luck with making your decision!
    mary

    Infections during HIPEC
    I'm scheduled to have this done next week in NYC and wonder what type infections you got? Did they feel it was due in any way to the procedure or was it just a hospital infection? I would think with such an involved procedure they would be extra careful to avoid infections...what did Dr Levine say about it...it's cause, and how to avoid these? Thanks
  • msccolon
    msccolon Member Posts: 1,917 Member
    #13
    fozzie02 said:

    Infections during HIPEC
    I'm scheduled to have this done next week in NYC and wonder what type infections you got? Did they feel it was due in any way to the procedure or was it just a hospital infection? I would think with such an involved procedure they would be extra careful to avoid infections...what did Dr Levine say about it...it's cause, and how to avoid these? Thanks

    my infections
    Well, the entire incision site wound up infecting down to the intestinal "brain". I had to have multiple surgeries to remove infected tissue and wound up with a full ventral hernia. In addition there were soft tissue abscesses in the abdominal cavity. Dr. Levine never had anything specific to say about the origin of infection. As a matter of fact, I wasn't very impressed with Dr. Levine and his team once I started getting infections; his bedside manner left much to be desired and I felt things could have been better managed, keeping the infection from getting as bad as it got. It wasn't MRSA or that other infection they check for when in the hospital and the culture for one of the soft tissue abscesses came back as intestinal flora, so my guess is it was internal leakage of some sort, which would put the blame on the surgical team in my opinion.
    mary
  • abrub
    abrub Member Posts: 2,174 Member
    #14
    fozzie02 said:

    Infections during HIPEC
    I'm scheduled to have this done next week in NYC and wonder what type infections you got? Did they feel it was due in any way to the procedure or was it just a hospital infection? I would think with such an involved procedure they would be extra careful to avoid infections...what did Dr Levine say about it...it's cause, and how to avoid these? Thanks

    Surgery and infections
    The latest information states that patients showering the day of surgery have a much lesser chance of incisional infection. My prep for surgery next week includes 2 showers, the night before and the morning of, using only Hibiclens (not near eyes, ears, or scalp.)

    As I had an infection last time, before these protocols were instituted, I'm going to be very careful.

    I've heard wonderful things about Dr. Bartlett in Pittsburgh for the HIPEC surgery. If my cancer comes back, that's where my Memorial Sloan Kettering drs will be sending me.
  • C Dixon
    C Dixon Member Posts: 201
    #15
    abrub said:

    Surgery and infections
    The latest information states that patients showering the day of surgery have a much lesser chance of incisional infection. My prep for surgery next week includes 2 showers, the night before and the morning of, using only Hibiclens (not near eyes, ears, or scalp.)

    As I had an infection last time, before these protocols were instituted, I'm going to be very careful.

    I've heard wonderful things about Dr. Bartlett in Pittsburgh for the HIPEC surgery. If my cancer comes back, that's where my Memorial Sloan Kettering drs will be sending me.

    Duke gave me these little
    Duke gave me these little shower kits with Hibiclens in a sponge to use twice before my HIPEC also. I had no problems with infection. I was very happy with Duke and Dr. Blazer and my recovery was pretty easy except for the first two days. I also had RFA on my liver.

    Catherine
  • Sammiesandwich
    Sammiesandwich Member Posts: 3
    #16
    fozzie02 said:

    HIPEC
    There is a growing number of hospitals/doctors that is doing this procedure...involves a pretty big operation to remove all visible cancer from peritoneal cavity and colon/pelvic area. You cannot have any metasteses to other organs, or you will not be a good candidate. You can see an actual operation on line google Dr Nassan at U. Of Maryland hospital...it's gruesome, but shows how this can work for some sufferers of this deadly disease. The operation is followed by heated chemo being pumped through your abdomen for 90 minutes. Google HIPEC, you will get a wealth of info. Note: there are some groups who poohoo the procedure, but fewer all the time. It's approved by Medicare, so it's not experimental,,,I'm going to have it next week in NY

    Hey Fozzie,
    If you don't
    Hey Fozzie,

    If you don't mind my asking - where and with who in NY are you doing HIPEC? My mother was just diagnosied and had surgery for stage IV appendix cancer. We are obviously looking into our options and would love to keep her in the NY area.
  • Sammiesandwich
    Sammiesandwich Member Posts: 3
    #17
    fozzie02 said:

    HIPEC
    There is a growing number of hospitals/doctors that is doing this procedure...involves a pretty big operation to remove all visible cancer from peritoneal cavity and colon/pelvic area. You cannot have any metasteses to other organs, or you will not be a good candidate. You can see an actual operation on line google Dr Nassan at U. Of Maryland hospital...it's gruesome, but shows how this can work for some sufferers of this deadly disease. The operation is followed by heated chemo being pumped through your abdomen for 90 minutes. Google HIPEC, you will get a wealth of info. Note: there are some groups who poohoo the procedure, but fewer all the time. It's approved by Medicare, so it's not experimental,,,I'm going to have it next week in NY

    Hey Fozzie,
    If you don't
    Hey Fozzie,

    If you don't mind my asking - where and with who in NY are you doing HIPEC? My mother was just diagnosied and had surgery for stage IV appendix cancer. We are obviously looking into our options and would love to keep her in the NY area.
  • abrub
    abrub Member Posts: 2,174 Member
    #18
    Sammiesandwich said:

    Hey Fozzie,
    If you don't
    Hey Fozzie,

    If you don't mind my asking - where and with who in NY are you doing HIPEC? My mother was just diagnosied and had surgery for stage IV appendix cancer. We are obviously looking into our options and would love to keep her in the NY area.

    All Appendix Ca doesn't require HIPEC
    I go to MSK (Dr. Chung and Dr. Paty) and had non-heated IP chemo. If they feel that her tumor type should have the HIPEC, they refer out, usually to UPitt MC (Dr. Bartlett) as they don't do HIPEC at MSK.

    3 years post dx, 2 years post treatment for stage 4 mucinous adenocarcinoma of the appendix, and I'm doing great.

    Good luck to your mom.
  • CanadaSue
    CanadaSue Member Posts: 339 Member
    #19
    Sugar Baker Protocol
    Hi,

    My husband had the Sugarbaker Protocol done here in Canada 4 years ago. They had found seedlings all over his peritneal wall. they removed the scar tissue all around his incission from the first surgery, a piece of liver, and his gallbladder (We were told that Chemo and the gallbladder do no mix well). After this debulking they washed out the cavity for 90 minutes with hot Chemo (120 degrees). They then sewed him up and left 4 tubes in the cavity. They then did hot Chemo washes everyday for 5 days straight. They leave the Chemo in for 23 hours, take it out and leave you dry for 1 hour, then the procedure starts again. We have been told that doing this procedure that there is a 20 - 50% chance of getting it all. At that point my husband was only 47 they say he has a good chance of beating it. It was a nine hour surgery, along with 14 days in the hospital.

    Hugs,

    Sue
  • Sammiesandwich
    Sammiesandwich Member Posts: 3
    #20
    abrub said:

    All Appendix Ca doesn't require HIPEC
    I go to MSK (Dr. Chung and Dr. Paty) and had non-heated IP chemo. If they feel that her tumor type should have the HIPEC, they refer out, usually to UPitt MC (Dr. Bartlett) as they don't do HIPEC at MSK.

    3 years post dx, 2 years post treatment for stage 4 mucinous adenocarcinoma of the appendix, and I'm doing great.

    Good luck to your mom.

    HIPEC - ABRUB
    Abrub - Thank you for the post. I took my mom into meet with Dr. Cercek (oncologist) and Dr. Weiser at MSK. Unfortunately, Dr. Weiser said that he could not comment on whether HIPEC would be beneficial in my mom's case, but did indicate that if they had done the initial surgery they would have done IPEC in light of the mucinous. As for HIPEC, we would have to meet with a doctor that performs that procedure in order to determine whether it would be beneficial. At this point, they would like her to undergo 6 months of chemo and see where she is at after that. I really wish she saw Dr. Paty, but we were given Dr. Weiser.

    While I would still meet with HIPEC folks, my mom just wants to start chemo at this point. Hopefully things will work. It is just scary b/c it is so serious at Stage IV.

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