Peritoneal metastasis - who else has them?

SharonVegas
SharonVegas Member Posts: 189
in Colorectal Cancer #1
Pete_lost_at_sea posted something that got me thinking. A nurse that he interviewed said in her experience, colon cancer patients with peritoneal mets usually had about a two year survival rate. I searched the net a bit and saw that she is probably right. I'm not caught up in survival rates because I believe everyone is different and their bodies handle cancer and treatments differently. But I am curious to learn about your experience with your own peritoneal mets.

Does anyone else currently have peritoneal mets or did anyone have them and successfully beat them? I just want to know what your experience has been not what you think my treatment should be (although I do appreciate that people care enough to add their 2 cents). I have had a consult for HIPEC but unless I have a complete sacrectomy at the same time, HIPEC is not the answer for me.

My peritoneal mets were discovered in December 2011. My onc tried Folfiri/Cetuximab Jan - June 2012 but it did not work in stopping progression of the mets. You can check out my profile and see what other cocktails were tried before the mets showed up. I'm currently on a trial drug Morab4 or a placebo - not sure. I don't feel like these mets are taking over my life and health. I am doing well overall. I have some discomfort in my abdomen about once a week, kinda like it's achey. My belly did get a bit large and I have been taking water pills for the acites (water building up in abdonminal cavity).

Any input would be appreciated.
SharonVegas (short for Sha (wife) and Ron (me) in Vegas)
«1

Comments

  • LivinginNH
    LivinginNH Member Posts: 1,456 Member
    #2
    Hi,
    Well, we were told in
    Hi,

    Well, we were told in Dec. '09 that the colon tumor had penetrated the peritoneal cavity, so it was only a matter of time until the mets made themselves known. Rick had liver surgery in April '10, and the mets showed up on a PET/CT in September '10. He had HIPEC in Nov. '10, but the mets came back in Apr. '11, and he's been fighting them down ever since. He's done everything possible, but the dang things are persistent. :-(
  • k44454445
    k44454445 Member Posts: 494
    #3
    mets
    i was dx june 2012 with tiny peritoneal metastatic colon mets. i had no symptoms maybe because they are tiny. i am on folfiri plus avastin because i also have 2 abd, ovary & liver tumors. i will have a ct & mri on oct 8 to see if chemo is working. God i hope so!!! if it is, i will continue for 6 more tx then be evaluated for hipec. if it is not working i will be put on different chemo & start all over with 12 tx. my onc did not say 2yrs for a time frame. in fact there is a possible bone met, left hip, that the onc at ohio state & at university of cincinnati,ohio, as well as my onc, all said possible radiation then later a hip replacement. so i think they are planning on me being around several years. at least i hope so!!! i hope this has helped you. good luck & do not get down. someone beats the odds so let that be us!
    hugs & praying for you
    judy
  • k44454445
    k44454445 Member Posts: 494
    #4
    LivinginNH said:

    Hi,
    Well, we were told in
    Hi,

    Well, we were told in Dec. '09 that the colon tumor had penetrated the peritoneal cavity, so it was only a matter of time until the mets made themselves known. Rick had liver surgery in April '10, and the mets showed up on a PET/CT in September '10. He had HIPEC in Nov. '10, but the mets came back in Apr. '11, and he's been fighting them down ever since. He's done everything possible, but the dang things are persistent. :-(

    LivinginNH
    i might have hipec. would you give me info on this as far as surg & recovery? i hear this is the moas ( mother of all surgeries)
    thanks
    judy
  • thxmiker
    thxmiker Member Posts: 1,278 Member
    #5
    I just got diagnosed NED,
    I just got diagnosed NED, then two months later told I have 3 peritoneal mets. ARGH! From a medical High to a medical low in two months.

    I have a Biopsy scheduled for the 27th to test the Mets for cancer. Either way, I am prepared to deal with LIFE!

    HIPEC is interesting. It is done after the surgery. Does it work? Many Surgeons are having good luck with it. Are they very good surgeons? or deos the HIPEC have better results? The difference using HIPEC vs not is small, but is a small difference all we need?

    Best Always, mike
  • LivinginNH
    LivinginNH Member Posts: 1,456 Member
    #6
    Hi Judy,
    I will send your a
    Hi Judy,

    I will send your a week long daily diary of Rick's HIPEC surgery recovery. However, I won't be able to access my home computer for a couple of more days since I'm staying at the hospital. Then you'll have an idea of what to expect, and we can answer your questions.

    Take care,
    Cyn
  • LivinginNH
    LivinginNH Member Posts: 1,456 Member
    #7
    thxmiker said:

    I just got diagnosed NED,
    I just got diagnosed NED, then two months later told I have 3 peritoneal mets. ARGH! From a medical High to a medical low in two months.

    I have a Biopsy scheduled for the 27th to test the Mets for cancer. Either way, I am prepared to deal with LIFE!

    HIPEC is interesting. It is done after the surgery. Does it work? Many Surgeons are having good luck with it. Are they very good surgeons? or deos the HIPEC have better results? The difference using HIPEC vs not is small, but is a small difference all we need?

    Best Always, mike

    Hi Mike, I'll send you the
    Hi Mike, I'll send you the same information that I'll send to Judy.

    Cyn
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #8
    great post sharonvegas
    see my post about baden baden, its relevant peritoneal mets i hope.
    hugs,
    pete

    Ps Google pmppals and join. Getting my plan together for hipec.
    Ie autologous blood transfusion
    Dedretic Cell vaccine to germany
    Tumour sensitivity testing to usa
    Muscle weight gain.
    Building stomach muscles
    Pain relief via meditation. Novel pain relief.
    Maybe hash cookies.
    Medications that don't suppress immune system
    Liposomal vit c, glutathione, turmeric.
    Preop supplement planning
    Postop meals and planning.
    In room air purifier hospital
    Qigong exercises for recovery and Preop.
    Meditation CD's
  • abrub
    abrub Member Posts: 2,174 Member
    #9
    I had extensive peritoneal spread
    Seeding all over. I had a complete debulking, followed by Intraperitoneal (IP) chemo (not HIPEC.) I've been in full remission since surgery/treatment 5 years ago.

    My primary was appendix, and we commonly have peritoneal mets.

    Ron, if you are not a candidate for HIPEC, have you asked if anyone knows if you could be a candidate for IP chemo? They do that at Memorial Sloan Kettering, among other places. It is a "common" treatment for Peritoneal Mesothelioma, so it is not unknown (altho Peritoneal Meso is a rare disease as well.)

    Good luck.
    Alice
  • belindahill
    belindahill Member Posts: 144
    #10
    Hi Sharon
    My husband was DX with colon cancer aug 2010, treated with surgery and chemo for 6mths. June 2011 discoverd that he has peritoneal mets and liver and lung mets. Treated with 6mths of chemo 3 mth break, then started again on chemo. He is not curable, and will be on chemo for life. Had ascites in June 2011, which he had drained twice, 12 litres. The ascites has stayed away. He is doing well, we just dont ask too many questions. Take care.
  • coloCan
    coloCan Member Posts: 1,944 Member
    #11
    belindahill said:

    Hi Sharon
    My husband was DX with colon cancer aug 2010, treated with surgery and chemo for 6mths. June 2011 discoverd that he has peritoneal mets and liver and lung mets. Treated with 6mths of chemo 3 mth break, then started again on chemo. He is not curable, and will be on chemo for life. Had ascites in June 2011, which he had drained twice, 12 litres. The ascites has stayed away. He is doing well, we just dont ask too many questions. Take care.

    Do not know how reliable this site is,nor how valid its info is
    but there is a site called:hipectreatment.com

    that i've come across in my readings.....
  • abrub
    abrub Member Posts: 2,174 Member
    #12
    coloCan said:

    Do not know how reliable this site is,nor how valid its info is
    but there is a site called:hipectreatment.com

    that i've come across in my readings.....

    I've heard of most of the best known, most-experienced HIPEC drs
    and I see none of their names here. I also know of some of the lesser known ones, and again don't see their names.

    With HIPEC, you need experience on your side - at least 150+ operations. It's very difficult surgery, and the rate of extreme complications is very high. If you search hard enough, you will probably find someone willing to perform this surgery. However, it does not mean it will help you.

    Also, some of these sites are created by the manufacturers of the HIPEC machines, and are not true medical resources. For anyone pursuing HIPEC, please be sure to ask the right questions, which include number of surgeries performed and outcomes (long-term.)

    It's a helluva price to pay for just a couple of months (and those months can be quite miserable.) I know of many people who have had great success with HIPEC. I know of others whose surgery was "successful" but after several miserable months, they succumbed.

    I hate to be negative, but you really have to be sure you are with one of the few experts for this procedure, in order to make it worthwhile.
  • k44454445
    k44454445 Member Posts: 494
    #13
    LivinginNH said:

    Hi Judy,
    I will send your a
    Hi Judy,

    I will send your a week long daily diary of Rick's HIPEC surgery recovery. However, I won't be able to access my home computer for a couple of more days since I'm staying at the hospital. Then you'll have an idea of what to expect, and we can answer your questions.

    Take care,
    Cyn

    Cyn
    thank you!
  • abrub
    abrub Member Posts: 2,174 Member
    #14
    abrub said:

    I've heard of most of the best known, most-experienced HIPEC drs
    and I see none of their names here. I also know of some of the lesser known ones, and again don't see their names.

    With HIPEC, you need experience on your side - at least 150+ operations. It's very difficult surgery, and the rate of extreme complications is very high. If you search hard enough, you will probably find someone willing to perform this surgery. However, it does not mean it will help you.

    Also, some of these sites are created by the manufacturers of the HIPEC machines, and are not true medical resources. For anyone pursuing HIPEC, please be sure to ask the right questions, which include number of surgeries performed and outcomes (long-term.)

    It's a helluva price to pay for just a couple of months (and those months can be quite miserable.) I know of many people who have had great success with HIPEC. I know of others whose surgery was "successful" but after several miserable months, they succumbed.

    I hate to be negative, but you really have to be sure you are with one of the few experts for this procedure, in order to make it worthwhile.

    HIPECtreatment.com is a commercial site
    Its spokespeople are only from those institutions that have a particular HIPEC machine. If you use that as a resource, please keep in mind that it is commercial.
  • thxmiker
    thxmiker Member Posts: 1,278 Member
    #15
    LivinginNH said:

    Hi Mike, I'll send you the
    Hi Mike, I'll send you the same information that I'll send to Judy.

    Cyn

    Thanks! I read a lot and am
    Thanks! I read a lot and am always interested in reading something I have not seen before. I am also happy that your husband did well with the treatment! We need to hear positive stories here also.

    I have been doing the detox diet pre surgery. I am in great physical shape and am ready for it.

    Best Always, mike
  • westie66
    westie66 Member Posts: 642
    #16
    abrub said:

    HIPECtreatment.com is a commercial site
    Its spokespeople are only from those institutions that have a particular HIPEC machine. If you use that as a resource, please keep in mind that it is commercial.

    Peritoneum Mets
    Hi all: There is a separate discussion board for peritoneum cancer either as a primary cancer or resulting from other cancers like colon cancer or gallbladder cancer. I have gallbladder cancer. Diagnosed in Oct 2009, surgery April 2010 when gallbladder, tumour, and part of liver removed. Several peritoneum mets noticed then - tests showed cancerous. I had chemo (gemcitibine + cisplatin) for 12 treatments but didn't slow down the peritoneum nodules increase in size. Also have a met to the liver. I then went on folfirinox (oxaliplatin + irenotecan + 5FU) for 14 treatments which did seem to work. HOwever, I ended up with a perforated bowel in May and was in hospital for 3 months. I now have a colostomy bag so further chemo may be out. However, the peritoneum mets have not increased in size or number (although the liver one has).
    Many people on the peritoneum discussion board are on maintenance chemo, no matter the origin of the mets.
    Cheryl
  • spainmum
    spainmum Member Posts: 29
    #17
    Hi Ron,
    My mom was dx on Oct'11 with colon cancer with two primary lesions and multiple peritoneal and retroperitoneal mets and also multiple lung and liver mets (two of the liver are big). She was on folfox for 6 tx but it didn't worked and then 12 tx of folfiri plus cetuximab that had shrunk the two biggest of the liver and the others ones are stable. Now she is in chemo break and then will continue with the folfiri plus cetuximab. My brother and I talked with a surgeon that do the HIPEC here in Barcelona but she is not a candidate because of the extension of the disease. I am following your post of Morab, perhaps one day she will had it.
    Hugs
    Celeste
  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #18
    I had a few mets to the peritoneum,
    which I think might be different from peritoneal seeding that some crc folks get. The ones I had were removed during surgery, and haven't returned since then (about three years ago). Really hoping that your trial goes well...it's always heartening when something new and effective comes along. Ann Alexandria
  • tachilders
    tachilders Member Posts: 313
    #19
    annalexandria said:

    I had a few mets to the peritoneum,
    which I think might be different from peritoneal seeding that some crc folks get. The ones I had were removed during surgery, and haven't returned since then (about three years ago). Really hoping that your trial goes well...it's always heartening when something new and effective comes along. Ann Alexandria

    I have mets to lung, liver
    I have mets to lung, liver LN and peritoneum. They removed some of my peritoneal mets when they did my colostomy surgery (~90% blockage of my sigmoid colon) about 4 months ago. I had 5 treatments of FOLFOX (reduced dosage on first two due to bile duct blockage), and 4 treatments of Avastin. Went for CT scans a couple weeks ago, and lung tumors were all stable, but I had significant shrinkage in primary colon tumor, liver tumors, and even the peritoneal tumors. My tumors tend to be small (with the exception of the primary colon tumor and one liver tumor) but are widespread, so I am not a candidate for surgery. Relying on chemo to keep me going, FTR, I'm stage 4 and pretty much will be on chemo for the rest of my life (just turned 46 last month). Bad news is that perioneal mets is generally a worse prognosis than mets to other areas. Good luck, and keep up the good fight. I plan to go as hard as I can at this cancer for as long as possible, but I am also trying to enjoy every day, because none of us know how many more days we will have....

    Tedd
  • SharonVegas
    SharonVegas Member Posts: 189
    #20
    Thank you all for your great
    Thank you all for your great posts! There is a lot of great info here and I hope other people have benefited as much as I have. Couple of things I will take to my onc is Removab and Intraperitoneal chemo. Although I am not a candidate for surgery, I still feel we can stop the progression of the PMets and I can live a full life.
    Be well everyone!
    SV
  • pog451
    pog451 Member Posts: 20
    #21
    SharonVegas said:

    Thank you all for your great
    Thank you all for your great posts! There is a lot of great info here and I hope other people have benefited as much as I have. Couple of things I will take to my onc is Removab and Intraperitoneal chemo. Although I am not a candidate for surgery, I still feel we can stop the progression of the PMets and I can live a full life.
    Be well everyone!
    SV

    Have you seen the queen of
    Have you seen the queen of peritoneal met survivors blog?

    http://www.wunderglo.com/

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