No Peritoneal Stripping/HIPEC Surgery for Me

westie66
westie66 Member Posts: 642
in Peritoneal Cancer #1
Hi all: Well, just got some bad but not unexpected news about possible peritoneum stripping/HIPEC surgery associated with gallbladder cancer. Remember that I had my gallbladder and its tumour removed in April 2010 but that there was spread to the peritoneum and to the liver. Not much spread, but some nevertheless. I've had two rounds of chemo - 12 treatments of cisplatin + gemcitibine and 12 treatments of folfirinox (oxaliplatin + irenotecan + 5FU pump - and the latter seemed to work enough that I would be considered for the surgeries (to first remove the spot on the liver and then the stripping and HIPEC. However, because the results of gallbladder cancer and peritoneal stripping have not been good (no success rates here in Canada yet), the liver surgeon and the peritoneal surgeons have decided not to go ahead as it wouldn't add anything to my survival and likely would shorten it. Bad news but that's the way it is. So more chemo I guess until it doesn't work. Not sure what else we can try.
But it is warm spring day and the birds are singing so ...
Cheryl

Comments

  • LaundryQueen
    LaundryQueen Member Posts: 676
    #2
    Sorry your options are not
    Sorry your options are not as broad as you had hoped. I had an oncologist explain to me that cancer goes into an accelerated growth phase after surgery due to the inflammation that goes with the post-op healing.

    Have you considered trying Cytoxan 50mg orally daily with 5fu IV monthly? There may be some synergy there.

    Best wishes to you.
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #3
    Sorry to hear this Cheryl
    I have been told the same thing. Both when I was diagnosed and almost every time I see my oncologist I ask again. I would not benefit from any surgery and there may be complications post operatively.

    So just chemo for me as well.

    Tina xx
  • abrub
    abrub Member Posts: 2,174 Member
    #4
    sorry to hear this, Cheryl
    But if they don't feel that the Peritoneal Stripping will buy you anything, then the pain and suffering and recovery that go with it are best avoided. Aim to maintain quality, with hopes that eventually the chemo will produce sufficient results.

    Alice
  • westie66
    westie66 Member Posts: 642
    #5
    abrub said:

    sorry to hear this, Cheryl
    But if they don't feel that the Peritoneal Stripping will buy you anything, then the pain and suffering and recovery that go with it are best avoided. Aim to maintain quality, with hopes that eventually the chemo will produce sufficient results.

    Alice

    No HIPEC
    Thanks, all, for your thoughts! I hear that the surgery is very painful and sometimes not too successful so maybe it is just as well. Several stripping/HIPEC surgeries on the colonclub discussion board have been cancelled lately too so we're not alone in this. I'll fight with the folfirinox again (just finished the 1st treatment after a break from it after 12 treatments) - a nasty chemo but if it works a little ...
    I'll try that drug that starts with a "c". The irenotecan and the 5FU are nasty!
    Cheryl
  • LivinginNH
    LivinginNH Member Posts: 1,456 Member
    #6
    westie66 said:

    No HIPEC
    Thanks, all, for your thoughts! I hear that the surgery is very painful and sometimes not too successful so maybe it is just as well. Several stripping/HIPEC surgeries on the colonclub discussion board have been cancelled lately too so we're not alone in this. I'll fight with the folfirinox again (just finished the 1st treatment after a break from it after 12 treatments) - a nasty chemo but if it works a little ...
    I'll try that drug that starts with a "c". The irenotecan and the 5FU are nasty!
    Cheryl

    Hi Cheryl, I'm so sorry...

    Hi Cheryl, I'm so sorry... Unfortunately, we're right there along with you. Rick was getting ready for the HIPEC surgery in late March, but the cancer spread back to the liver and in other areas, no he's no longer a candidate. He actually had HIPEC in Dec. '10, but it came back four months later. Good luck with the new chemo, I hope that the side effects aren't too bad for you.

    All my best,

    Cynthia
  • westie66
    westie66 Member Posts: 642
    #7
    LivinginNH said:

    Hi Cheryl, I'm so sorry...

    Hi Cheryl, I'm so sorry... Unfortunately, we're right there along with you. Rick was getting ready for the HIPEC surgery in late March, but the cancer spread back to the liver and in other areas, no he's no longer a candidate. He actually had HIPEC in Dec. '10, but it came back four months later. Good luck with the new chemo, I hope that the side effects aren't too bad for you.

    All my best,

    Cynthia

    Thanks!
    Well, time to think outside the box and come up with another strategy! The folfirinox is trying me now but this too will pass. The birds are passing through heading up north so time to get out the binoculars!
    Cheryl
  • wanttogetwellsoon
    wanttogetwellsoon Member Posts: 147
    #8
    peritoneal stripping...
    Cheryl...
    I was upset to hear that the surgery is not to go ahead but really glad that your surgeons have thought it through and you won't have to go through the pain that such surgery can bring. Peritoneal stripping was mentioned to me by my surgeon but has not been talked about since and frankly, I'm glad. I responded to my first cycle of chemo well but I've been told that this might not be the case again. I remain hopeful that a cure will be found in time. Well, actually, some days I do and some days I don't. That's the rollercoaster ride this disease brings. Most days, I can't do a lot of the normal things I usually did in the past, but I am positive on the whole and some of this is because I know there are people out there working away in their clinics and labs wanting to help and some day they will. I just hope yet another breakthrough comes soon because I feel there will be one and I want to be up there for the first treatment together with you and others here too. :)
  • Best Friend
    Best Friend Member Posts: 222
    #9
    westie66 said:

    Thanks!
    Well, time to think outside the box and come up with another strategy! The folfirinox is trying me now but this too will pass. The birds are passing through heading up north so time to get out the binoculars!
    Cheryl

    sorry
    Maybe here they are just more likely to try it. I mean it is terrible surgery and all but is ur cancer in fluids too like in ur lungs? I mean my mom had her gallbladder removed years ago. but when they found her cancer it was EVERYWHERE! liver, spleen,omentum, colon, stomach....and they removed the omentum, and she had the hysterectomy, and then they literally shaved the cancer off the other organs. She was left with a little cancer on the spleen. She DID go through hell. I just wish i understood docs more. i know some people are inoperable but i hear so many similarities between everyone. I guess they have their reasons. I think my mom is a lucky woman. The university of Penn is such a research hospital that maybe thats why they are willing to give the surgery a try.
  • westie66
    westie66 Member Posts: 642
    #10
    wanttogetwellsoon said:

    peritoneal stripping...
    Cheryl...
    I was upset to hear that the surgery is not to go ahead but really glad that your surgeons have thought it through and you won't have to go through the pain that such surgery can bring. Peritoneal stripping was mentioned to me by my surgeon but has not been talked about since and frankly, I'm glad. I responded to my first cycle of chemo well but I've been told that this might not be the case again. I remain hopeful that a cure will be found in time. Well, actually, some days I do and some days I don't. That's the rollercoaster ride this disease brings. Most days, I can't do a lot of the normal things I usually did in the past, but I am positive on the whole and some of this is because I know there are people out there working away in their clinics and labs wanting to help and some day they will. I just hope yet another breakthrough comes soon because I feel there will be one and I want to be up there for the first treatment together with you and others here too. :)

    Peritoneal Stripping
    Hi: I have to be honest and say I'm glad to. If it didn't work, I'd have gone through a lot of horrible pain and perhaps wasted this whole spring summer. I've read a lot of horror stories on the colon club webside about the surgery. The liver surgeon said an interesting thing - that the surgery appears to be more successful if the cancer is "mucilangeous" (spelling) - in other words, ascites is a common symptom. I don't and hever had had that. I know Da Beach Bum did and women who got peritoneum cancer from ovarian cancer do. For some reason, my gallbladder cancer is just not acting the way "it should". Usually gallbladder cancer takes its hosts really fast. I have been diagnosed since October 2009 and even by then the tumour was visible extending beyond the gallbladder to the liver. The peritoneum nodules were there at surgery (couldn't they just them out - there are/were only 5 or 6) as was the mass on the liver.
    What I'm afraid of is this - we used the "big gun" approach to shrink/stabilize the cancer (folfirinox used on pancreatic cancer patients) which worked. We did this to prepare for the surgery or at least to get approval for it. Now what? I'm on it again but maybe should have a more gentle cocktail of it extended over a longer time period. But can one go backwards? I can't afford years of it for sure ($4000/month).
    A friend read on a colon cancer Canada website that freezing the things has shown promise.
    Stick a big needle in there and... Anyone know anything about this?
    Cheryl
  • wanttogetwellsoon
    wanttogetwellsoon Member Posts: 147
    #11
    westie66 said:

    Peritoneal Stripping
    Hi: I have to be honest and say I'm glad to. If it didn't work, I'd have gone through a lot of horrible pain and perhaps wasted this whole spring summer. I've read a lot of horror stories on the colon club webside about the surgery. The liver surgeon said an interesting thing - that the surgery appears to be more successful if the cancer is "mucilangeous" (spelling) - in other words, ascites is a common symptom. I don't and hever had had that. I know Da Beach Bum did and women who got peritoneum cancer from ovarian cancer do. For some reason, my gallbladder cancer is just not acting the way "it should". Usually gallbladder cancer takes its hosts really fast. I have been diagnosed since October 2009 and even by then the tumour was visible extending beyond the gallbladder to the liver. The peritoneum nodules were there at surgery (couldn't they just them out - there are/were only 5 or 6) as was the mass on the liver.
    What I'm afraid of is this - we used the "big gun" approach to shrink/stabilize the cancer (folfirinox used on pancreatic cancer patients) which worked. We did this to prepare for the surgery or at least to get approval for it. Now what? I'm on it again but maybe should have a more gentle cocktail of it extended over a longer time period. But can one go backwards? I can't afford years of it for sure ($4000/month).
    A friend read on a colon cancer Canada website that freezing the things has shown promise.
    Stick a big needle in there and... Anyone know anything about this?
    Cheryl

    freezing
    Hi Cheryl
    The freezing thing is news to me and I'd like to know more too. Perhaps it would be best if you started a new thread so as many people here to see it straight away. I was thinking of doing it but then I thought it might be insensitive in that you might not have wanted to do that. I'm glad that you seem to be responding atypically in a good way. Ascites is a pretty miserable symptom to have and you seem to have responded well to your treatment which is really positive. :)
  • westie66
    westie66 Member Posts: 642
    #12
    wanttogetwellsoon said:

    freezing
    Hi Cheryl
    The freezing thing is news to me and I'd like to know more too. Perhaps it would be best if you started a new thread so as many people here to see it straight away. I was thinking of doing it but then I thought it might be insensitive in that you might not have wanted to do that. I'm glad that you seem to be responding atypically in a good way. Ascites is a pretty miserable symptom to have and you seem to have responded well to your treatment which is really positive. :)

    Cryoablation
    She thinks that is the name of the procedure. She found it on the colon cancer Canada website. I'll check that website when I get back from the vets and start a new thread.
    Sure would be easier than the surgery!
    Cheryl
  • Coach B
    Coach B Member Posts: 18
    #13
    westie66 said:

    Cryoablation
    She thinks that is the name of the procedure. She found it on the colon cancer Canada website. I'll check that website when I get back from the vets and start a new thread.
    Sure would be easier than the surgery!
    Cheryl

    I have GEJ cancer spread to PE n Omentum
    Hi and I dont know how to begin to say this bec I have one week n half to go for fis new stomach and HIPEC surgery on May 1st 2013.... Two oncol surg one is to fix n clean esophageal n stomach and second dr will debulking omentum which show cancer in peritoneal n omentum n drs said about 10 to 13 hours of surgery... Is that too long or sound common to youn .....I worry if surg worth it or stay on chemo?
  • abrub
    abrub Member Posts: 2,174 Member
    #14
    Coach B said:

    I have GEJ cancer spread to PE n Omentum
    Hi and I dont know how to begin to say this bec I have one week n half to go for fis new stomach and HIPEC surgery on May 1st 2013.... Two oncol surg one is to fix n clean esophageal n stomach and second dr will debulking omentum which show cancer in peritoneal n omentum n drs said about 10 to 13 hours of surgery... Is that too long or sound common to youn .....I worry if surg worth it or stay on chemo?

    HIPEC surgery and treatment commonly take 9-14 hours

    They want to check very carefully for any visible tumor throughout your peritoneum and on all organs, and remove whatever is possible.  It is a very detailed surgery.  The time frame sounds right.

     

    Be prepared for a rough recovery - this isn't easy.  However, the goals are worth it.

  • westie66
    westie66 Member Posts: 642
    #15
    abrub said:

    HIPEC surgery and treatment commonly take 9-14 hours

    They want to check very carefully for any visible tumor throughout your peritoneum and on all organs, and remove whatever is possible.  It is a very detailed surgery.  The time frame sounds right.

     

    Be prepared for a rough recovery - this isn't easy.  However, the goals are worth it.

    Peritoneal Stripping and Hipec Surgery

    Hi:  I agree with abrub - I did find out as much as I could about this surgery as I was in line for it (but did not get approved).  I was told the same as abrub - 9 to even 17 hours, a 3 week stay in hospital, and then a 3 month convalescence.  It takes so long because the peritoneum itself is only one cell wide and so it takes a long time to remove it.  As wel it is the biggest organ in the body, bigger even than our skin (can't remember who told me that).  The most important thing is to get a surgeon who has done the procedure several times before.

    Good luck with your surgery! Keep us posted on how it goes.

    Cheryl

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