CSN Login
Members Online: 14

PMP - debulking, omentum,peritoneum,chemo

daisychain
Posts: 1
Joined: Dec 2012

I was recently diagnosed with PMP (pseudomyxoma peritonei). Only one or two people in a million get this. It basically is a tumor on the appendix that creates a jelly in the abdomen. The tumor can spread to other organs and tissues. I had the debulking and the HIPEC treatment. *Regular chemo does NOT work on this condition. HIPEC is also being used on other cancers that are a local problem. I had one emergency treatment to remove liters of the jelly, appendix, ovarian mass, and omentum. The second time I had more debulking, spleen removed and the HIPEC done. I was extremely lucky that a new doctor was on staff at my local hospital that had studied at Duke and knew right away what this was when he was consulted with. Please look into HIPEC and rare cancers if you are in doubt as to your status. In my case PMP was going on.for years and I had no idea until the very end. I hope this is helpful.

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi: I know someone on this discussion board has had appendix cancer that spread to the peritoneum. They also had the peritoneum stripping I think and the HIPEC procedure. I have peritoneum cancer that spread from the gallbladder but have been turned down for the stripping procedure and HIPEC (I don't think I would have survived it!).
Cheryl

abrub's picture
abrub
Posts: 1543
Joined: Mar 2010

but I did not have HIPEC or peritoneal stripping. I did, however, have complete debulking of my omentum, TAH-BSO, and my colon was resected in 3 places. I also had Intraperitoneal chemo (IP) given in a series of bi-weekly 3-day cycles, starting the day after surgery. My hospital (Memorial Sloan Kettering) usies that procedure in lieu of HIPEC, and finds that the results are comparable, or with my tumor type, can be even better. I've been NED since my surgery and treatments 5 years ago.

majendza
Posts: 1
Joined: Feb 2013

I was diagnosed with gastric cancer in dec 2011, I had surgery with most of my stomach removed, chemo and radiation. I bounced back quite well from my surgery and was feeling back to normal, just thinner.  I last ct this year showed small tumors in my peritoneum, needless to say I am flawed and i am on treatment again of FOLFIRI and 5fu, so far so good, I tolerate my treatments very well.  They are considering HIPEC for me. It sounds pretty scarey but I am desperate to find the longest remission possible. i am 51, good shape strong and never had any other serious illness.  I am going for a second opinion and thinking of Sloan Kettering, It sounds like you had a good experience here.  I already saw a surgeon in my state but was not happy or comfortable with him at all.  He was betting on my odds like he was at a horse race. Any advice would be great.

 

Thanks

 

abrub's picture
abrub
Posts: 1543
Joined: Mar 2010

My experience at Sloan Kettering has been excellent. They don't do HIPEC (yet) as they are not convinced it holds an advantage over IP chemo given in multiple cycles, which is the treatment I had, and has been quite successful, despite extensive peritoneal spread.  You'll want to get in with Dr. Paty or Dr. Nash or Dr. Guillem if you can.  I believe they will be starting a trial comparing HIPEC to IP chemo shortly.

It certainly doesn't hurt to get another opinion.  I had several, and Dr. Paty made the most sense to me.  Good luck!

Feel free to send me a private message with any questions.

Alice

PatsieD
Posts: 100
Joined: Jun 2012

Hello Cheryl.. it was good to hear from you and what's happening...

 

Bowler223
Posts: 2
Joined: Jan 2013

I have Pertioneal Mesotholima.. I have had debulking and HIPEC surgery..Its a long surgery 12 hours.. They took my spleen , part of my pancreas,gallbladder and appendix ..I stayed in the hospital for 5 weeks after surgery..Lungs filled up with fluid around them.kidney failure and threw up for 4 weeks..But I am alive and going really good exept for pain that I still have that is in the area of the pancreas. I am 10 months out from this surgery and was wondering if anyone still has pain from their surgery..I was so blessed to find Dr Loggie and he really is wonderful..I go see him in Nebraska next week ..Hope to get more answers about this pain..Have a blessed day!!

baseballgirl71
Posts: 11
Joined: Dec 2011

Hello. I have peritoneal Meso also. I had HIPEC and debulking in October of 2011. I still have pain in certain parts of my abdomen from this surgery. I do not think it will ever be the same. Still getting used to my "new" normal. Just grateful that I am still alive and that there is at least some treatment for this terrible disease. I am willing to talk about anything in reagrds to this if you are interested.

Elissa

PatsieD
Posts: 100
Joined: Jun 2012

Hello Bowler... I was more than shocked to learn what you have gone through. I wasn't offered HIPEC as I have the disease throughtout the abdomen and I'm Stage IV. However, I'm post first hospital admission 2 years soon and I'm doing better than expected so far. There is hope. Just don't look at online stats. That's what I think.

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network