PMP - debulking, omentum,peritoneum,chemo

daisychain
daisychain Member Posts: 1
edited December 2022 in Peritoneal Cancer #1
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.

Comments

  • westie66
    westie66 Member Posts: 642
    #2
    Appendix Cancer
    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
    abrub Member Posts: 2,174 Member
    #3
    westie66 said:

    Appendix Cancer
    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

    I had peritoneal mets from Appendix cancer
    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.
  • Bowler223
    Bowler223 Member Posts: 2
    #4
    I have Pertioneal

    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
    baseballgirl71 Member Posts: 10
    #5
    Bowler223 said:

    I have Pertioneal

    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!!

    Peritoneal Meso Also......

    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
    PatsieD Member Posts: 99
    #6
    westie66 said:

    Appendix Cancer
    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

    You

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

     

  • PatsieD
    PatsieD Member Posts: 99
    #7
    Bowler223 said:

    I have Pertioneal

    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!!

    Bowler

    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.

  • majendza
    majendza Member Posts: 1
    #8
    abrub said:

    I had peritoneal mets from Appendix cancer
    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.

    ca in peritoneum

    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
    abrub Member Posts: 2,174 Member
    #9
    majendza said:

    ca in peritoneum

    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

     

    My experience at Sloan

    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

  • mom778082
    mom778082 Member Posts: 2
    #10
    majendza said:

    ca in peritoneum

    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

     

    I was diagnosed with PMP in

    I was diagnosed with PMP in 1983. I had a ruptured appendix where tumor startedplus I had a second primary cancer of right ovary. I've had numerous debulking surgeries and different types of chemo, but not stripping. It's 35 years later. Currently in remission.

  • mom778082
    mom778082 Member Posts: 2
    #11
    PMP

    I was diagnosed with PMP in 1983. I'm trying to find out if anyone has heard of this spreading to the kidney. I have a large complex cyst on my right kidney.

  • Gsbrown
    Gsbrown Member Posts: 1
    edited April 2020 #12
    PMP is massive

    Hello, I was diagnosed with PMP in March of this year. I was scheduled for surgery in Apr. But upon opening me up the tumor was too big and had engulfed so much in my abdomen that all they could do safely was drain 2 litters of the "jelly." I am now going through chemo in the hope of shrinking it enough where surgery is possible in the future. I am in one of the best cancer hospitals in the country, Barnes/Jewish in St. Louis. Can anyone relate or offer advise?

  • farraleeaouellette
    farraleeaouellette Member Posts: 4 Member
    #13
    https://csn.cancer.org/discussion/251282/pmp-debulking-omentum-peritoneum-chemo

    I was sick for 2 years and 2 months having no idea what was wrong with me. I was told I was throwing up 9 hours a day because of untreated bipolar. Had doctors checked in 2017 when all this started this could have been nipped. But by ignoring me and making me fight for healthcare I was not diagnosed until October 21, 2019. I had undergone a laparoscopy October 15, 2019 which I also had to fight for. I was told more than likely all I had was endometriosis. So when the two surgeons went in they discovered there was something wrong with my appendix, they called a third surgeon in to remove what was left of my appendix and sent for pathology. 6 days later I'm getting a phone call at 8:02 in the morning that I have a rare cancer that needs treatment at a different facility. I saw the surgical oncologist October 25, 2019 and was scheduled for cytoreductive with hipec surgery for November 20, 2019. I had three weeks which was definitely not enough time to prepare mentally or physically for the surgery. I had a common reaction to the hipec when I got home. I started hallucinating. February 20, 2020 I got a call from Surgical Oncology, mind you this was after I left his office and he said I had to be started on blood thinners because I had a blood clot in my liver. I guess he expects me to believe he didn't know that 45 minutes previously when he saw me in the exam room. I have stage 4 appendix cancer Psuedomyxoma peritonei. they had to do an additional two surgeries July 1, 2020 and July 15, 2020. July 15th was another cytoreductive with hipec and total hysterectomy. this cancer caused my left ovary to rupture.

  • Jaeatloz
    Jaeatloz Member Posts: 8 Member
    #14

    I was diagnosed with primary peritoneal carcimatosis in 11-2021. I didn't have any symptoms. Went for covid test. Led to ekg, labs and CT which showed asceties and mass where left ovary would be. (Had total hysterectomy in 1982, age 38, now 79). 4 rounds of chemo, the debulking and removal of omentum, then 4 more rounds of chemo. (Taxil and carboplatin) That was 6 months ago. Ct doesn't show any cancer, but ca-125 never got below 39 and is up to 224. So started doxil and Avastin 2 weeks ago. 2nd treatment today of Avastin. Anyone else have this treatment.

  • jason0329
    jason0329 Member Posts: 1 *
    #15

    I was recently diagnosed with recurrent small bowel cancer with carcinomatosis peritonei and gut obstruction and failed conventional chemotherapy. I previously did a pet-ct scan less than a year ago and 1 year after my last chemo treatment and there was no signs of any cancer present at that time. My doctors now tell me that they cannot do any type of resection at my Ileocolic and Jejunoileal small bowel to relieve the gut obstructions due to the metatasis on my peritonei limiting a safe procedure. The surgical oncologist has also ruled out my feasibility for CRS-HIPEC treatment and surgery. Has anybody else had a similar experience or diagnoses?🤔

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