ascites

belindahill
belindahill Member Posts: 144
in Peritoneal Cancer #1
Hi, im new to the peritoneal cancer site, my husband was dx stage 3c cc aug 2010, he had surgery then 6mths xeloda tabs, was doing very well, his last scan on the 24th of june found that the cancer had spread to the peritoneal, and one spot on lung and liver, his oncologist was concerned with the peritoneal, and the control of the ascites, he had 7 1/2 litres drained, and is waiting to start chemo again, 4 rounds over 3mths, but his tummy is swelling again and he is very poorly at the moment, we both do not understand what this all means, has any one had a similar cancer and what treatment?

Comments

  • daBeachBum
    daBeachBum Member Posts: 164
    #2
    Hi Belinda
    Hi Belinda,

    I'm probably going to be the guy here who has the closest pathology to your husband's...

    I'm sorry to hear about his diagnosis and that he is feeling crappy recently. I was diagnosed with stage 4 colon cancer with "substantial osmental caking" early this year and presented with the same swollen belly your husband had. My first paracentisis was 7.4 liters. Thus far, I am surgery free with the exception of having had a colon stent to open things up, since a large tumor outside my colon wall was constricitng it.

    My understanding is that ascites is associated primarily with cihrosis (90% of cases). However cc and peritoneal cancer account for much of the remaining 10% (like mine - and I presume your husband). It was explained to me that ascites by itself is typically not dangerous per se, unless it is deemed malignant which is relatively rare. That being said, ascites is a symptom of some other serious condition. For me, it was either the cc or the peritoneal c (which are likey the same cell structure).

    I ended up getting drained six times while I was in the hospital. Luckily the FOLFOX regimen worked wonders for me and the ascites completely disappeared and I felt/feel great. I have since had my regimen modified to swap Avastin for Oxaliplatin. This really knocked down my colon tumors and the caking on my first post chemo scan. I'm having my second CT scan next week and am hoping for more good news. I am on "chemo for life" every two weeks.

    Sometime diuretics can control ascites, but they did nothing for me. Luckily paracentises are quick and pretty well painless. Some of the other women on the site here have had it worse because the ascites presented itself nearer the lungs and caused shortness of breath.

    I hope that they dial in a chemo routine soon that knocks things down once and for all for your hubby. In the meantime, he's probably going to have the occassional paracentisis to relieve discomfort. I am sure that your onc has done the calculations for SAAG. This is a test of the ascites fluid that is useful in pointing towards the root cause of the ascites. I (and I would assume your husband) have a low gradient meaning its cancer related, but you'll want to know this number just in case the gradient is high, which could indicate liver damage.

    I hope I haven't alarmed you or you husband with any of this. I am just letting you know what I have heard from my Onc and from my research. The plain truth is that I feel like a million bucks today after being at death's door this winter. People who don't know I am sick are astonished to find out, since I look just fine. I wish the exact same thing for your husband!!

    You or your husband are welcome to PM me if you ever wanted to talk and compare notes :-)

    All the best!

    Ray
  • belindahill
    belindahill Member Posts: 144
    #3
    daBeachBum said:

    Hi Belinda
    Hi Belinda,

    I'm probably going to be the guy here who has the closest pathology to your husband's...

    I'm sorry to hear about his diagnosis and that he is feeling crappy recently. I was diagnosed with stage 4 colon cancer with "substantial osmental caking" early this year and presented with the same swollen belly your husband had. My first paracentisis was 7.4 liters. Thus far, I am surgery free with the exception of having had a colon stent to open things up, since a large tumor outside my colon wall was constricitng it.

    My understanding is that ascites is associated primarily with cihrosis (90% of cases). However cc and peritoneal cancer account for much of the remaining 10% (like mine - and I presume your husband). It was explained to me that ascites by itself is typically not dangerous per se, unless it is deemed malignant which is relatively rare. That being said, ascites is a symptom of some other serious condition. For me, it was either the cc or the peritoneal c (which are likey the same cell structure).

    I ended up getting drained six times while I was in the hospital. Luckily the FOLFOX regimen worked wonders for me and the ascites completely disappeared and I felt/feel great. I have since had my regimen modified to swap Avastin for Oxaliplatin. This really knocked down my colon tumors and the caking on my first post chemo scan. I'm having my second CT scan next week and am hoping for more good news. I am on "chemo for life" every two weeks.

    Sometime diuretics can control ascites, but they did nothing for me. Luckily paracentises are quick and pretty well painless. Some of the other women on the site here have had it worse because the ascites presented itself nearer the lungs and caused shortness of breath.

    I hope that they dial in a chemo routine soon that knocks things down once and for all for your hubby. In the meantime, he's probably going to have the occassional paracentisis to relieve discomfort. I am sure that your onc has done the calculations for SAAG. This is a test of the ascites fluid that is useful in pointing towards the root cause of the ascites. I (and I would assume your husband) have a low gradient meaning its cancer related, but you'll want to know this number just in case the gradient is high, which could indicate liver damage.

    I hope I haven't alarmed you or you husband with any of this. I am just letting you know what I have heard from my Onc and from my research. The plain truth is that I feel like a million bucks today after being at death's door this winter. People who don't know I am sick are astonished to find out, since I look just fine. I wish the exact same thing for your husband!!

    You or your husband are welcome to PM me if you ever wanted to talk and compare notes :-)

    All the best!

    Ray

    Hi Ray
    Thank you for your reply, I took my husband back to hospital yesterday to again have the ascites drained, he feels very poorly at the moment, and has losts weight. He starts chemo Thurs, he will be having oxaliplatin and capecitabine, and hopefully bevacizumab still waiting for this drug to be released. He has been told that he has a spot on liver and lung, but the oncologist was not too concerned saying that the chemo should sort that out, his bloods have been fine so far!! Its the peritoneal they want to sort, they seem to be saying that chemo wont cure but maybe control. My husband is 54, and was a very fit man until all this happened. We are not coping very well ant the moment. We live in England, staffordshire.
    I am so pleased that you sent me the information please keep in touch. Belinda.
  • AussieMaddie
    AussieMaddie Member Posts: 345 Member
    #4
    Another one :(
    Hi Belinda,

    I'm so sorry that your husband has had such bad luck. Unlike other advice given to you (which I cannot at all question) my only symptom since being diagnosed back around Novemberis the ascites. No CT scans and more recently PET scans show anything at all, but one thing I can tell you is that the chemo has kept the ascites away completely.

    My chemo is a bit different. I've been on carboplatin and paxlat.. (taxol - I can't spell the full word). I've been diagnosed officially as having "primary of unknown cause with mets to the peritoneum" - I don't know why they just don't say Primary Peritoneal Cancer. As far as I know, that's what caused the ascites in me. After putting me on a strict regimen of diuretics to stop my body "making fluid", I was finally drained of 4 litres from my abdomen then 1.2lites from a lung before the chemo stopped it coming back altogether. My onc. wants to keep me on chemo for the next two months and then take a break while he keeps an eye on my CA125 cancer marker (it's a marker for uterine and peritoneal cancer)

    I wish you and your husband all the best. You may well be surprised at just how well the ascites responds to the chemo. (On the other hand, I hope that your husband responds ok to the chemo itself. That can be difficult. I was lucky, had no side effects. Everyone is different. Just discuss any concerns with his oncologist)

    Take care

    AussieMaddie
  • vidsi
    vidsi Member Posts: 4
    #5
    daBeachBum said:

    Hi Belinda
    Hi Belinda,

    I'm probably going to be the guy here who has the closest pathology to your husband's...

    I'm sorry to hear about his diagnosis and that he is feeling crappy recently. I was diagnosed with stage 4 colon cancer with "substantial osmental caking" early this year and presented with the same swollen belly your husband had. My first paracentisis was 7.4 liters. Thus far, I am surgery free with the exception of having had a colon stent to open things up, since a large tumor outside my colon wall was constricitng it.

    My understanding is that ascites is associated primarily with cihrosis (90% of cases). However cc and peritoneal cancer account for much of the remaining 10% (like mine - and I presume your husband). It was explained to me that ascites by itself is typically not dangerous per se, unless it is deemed malignant which is relatively rare. That being said, ascites is a symptom of some other serious condition. For me, it was either the cc or the peritoneal c (which are likey the same cell structure).

    I ended up getting drained six times while I was in the hospital. Luckily the FOLFOX regimen worked wonders for me and the ascites completely disappeared and I felt/feel great. I have since had my regimen modified to swap Avastin for Oxaliplatin. This really knocked down my colon tumors and the caking on my first post chemo scan. I'm having my second CT scan next week and am hoping for more good news. I am on "chemo for life" every two weeks.

    Sometime diuretics can control ascites, but they did nothing for me. Luckily paracentises are quick and pretty well painless. Some of the other women on the site here have had it worse because the ascites presented itself nearer the lungs and caused shortness of breath.

    I hope that they dial in a chemo routine soon that knocks things down once and for all for your hubby. In the meantime, he's probably going to have the occassional paracentisis to relieve discomfort. I am sure that your onc has done the calculations for SAAG. This is a test of the ascites fluid that is useful in pointing towards the root cause of the ascites. I (and I would assume your husband) have a low gradient meaning its cancer related, but you'll want to know this number just in case the gradient is high, which could indicate liver damage.

    I hope I haven't alarmed you or you husband with any of this. I am just letting you know what I have heard from my Onc and from my research. The plain truth is that I feel like a million bucks today after being at death's door this winter. People who don't know I am sick are astonished to find out, since I look just fine. I wish the exact same thing for your husband!!

    You or your husband are welcome to PM me if you ever wanted to talk and compare notes :-)

    All the best!

    Ray

    hi ray
    m an indian n
    hi ray
    m an indian n recently my mother is diagnosed with ppc at a stage of 3c..
    Whole of my family is at a shock....
    She majorly suffers from d problem of ascites even after a debulking surgery wherein all her major organs are removed except intestines,lymphnodes, kiver and kidney...
    just wanted to knw is survival rate for this kind of a patient is gud..
    because here people usually say she doesn't have much time may be 4-5 months...


    Regards Vidushi
    indian
  • daBeachBum
    daBeachBum Member Posts: 164
    #6
    vidsi said:

    hi ray
    m an indian n
    hi ray
    m an indian n recently my mother is diagnosed with ppc at a stage of 3c..
    Whole of my family is at a shock....
    She majorly suffers from d problem of ascites even after a debulking surgery wherein all her major organs are removed except intestines,lymphnodes, kiver and kidney...
    just wanted to knw is survival rate for this kind of a patient is gud..
    because here people usually say she doesn't have much time may be 4-5 months...


    Regards Vidushi
    indian

    Hi Vidushi
    Hi Vidushi,

    I am sorry to hear that your mother continues to get ascites after her surgery. I hope that her doctors find a chemo routine soon that shrinks her cancer and that the ascites goes away and she can resume as normal a life as possible.

    I don't know the published survival rates for ppc. My peritoneal cancer is secondary to colon cancer. I do know that there are women on this board who have been battling and coping successfully with ppc and getting on with their lives. I sincerely hope this is the case for your mother as well.

    I send loving and healing thoughts to your mother and your family. Stay strong for her and take care of yourself! Being a caregiver or family member of someone with cancer can be just as hard as having the disease.

    Namaste,

    Ray
  • wanttogetwellsoon
    wanttogetwellsoon Member Posts: 147
    #7
    Hi there and welcome
    I was really moved to read about your husband. I too have had ascites and it made me very poorly too with constipation. Constipation seems such a trivial thing and something everyone talks about like the weather, but when it is associated with ascites, it's a different story. It put me in hospital in March for 18 days. The peritoneum normally produces fluid which helps the organs of the abdomen slide freely. With my type of cancer, which is low grade surface papillary primary peritoneal cancer, cancer cells develop which are similar to the original mother cells and therefore mimic the actions of those original epithelial cells and produce fluid too. Added to that, the lymph drainage sytem can become blocked. So then, the abdomen becomes like a bath tub with the plug in and has to be drained.

    Since I've had my chemo treatment though, the ascites has stopped building up which has been a massive boost to me and how I see my condition and I know others here have had the same result. I hope this information can be of help to you and give you a lot of hope that the ascites will be under control soon. Take good care ...
  • vidsi
    vidsi Member Posts: 4
    #8
    daBeachBum said:

    Hi Vidushi
    Hi Vidushi,

    I am sorry to hear that your mother continues to get ascites after her surgery. I hope that her doctors find a chemo routine soon that shrinks her cancer and that the ascites goes away and she can resume as normal a life as possible.

    I don't know the published survival rates for ppc. My peritoneal cancer is secondary to colon cancer. I do know that there are women on this board who have been battling and coping successfully with ppc and getting on with their lives. I sincerely hope this is the case for your mother as well.

    I send loving and healing thoughts to your mother and your family. Stay strong for her and take care of yourself! Being a caregiver or family member of someone with cancer can be just as hard as having the disease.

    Namaste,

    Ray

    thanks
    Hi, Ray
    thank you sooo much for your wishes, i think it worked..
    after first cycle of chemotherapy ascitis is gone. on 28th of aug she completed her second round but has turned really weak..

    m really upset and worried for her she is a big support for me in my house...
    I have an elder brother who is mentally retarded and my father recently had an attack m really really worried abt my family especially mum.....


    but anyways thank u soo much for ur wishes and all d best to u also
    may u get well soon...
  • AussieMaddie
    AussieMaddie Member Posts: 345 Member
    #9
    vidsi said:

    thanks
    Hi, Ray
    thank you sooo much for your wishes, i think it worked..
    after first cycle of chemotherapy ascitis is gone. on 28th of aug she completed her second round but has turned really weak..

    m really upset and worried for her she is a big support for me in my house...
    I have an elder brother who is mentally retarded and my father recently had an attack m really really worried abt my family especially mum.....


    but anyways thank u soo much for ur wishes and all d best to u also
    may u get well soon...

    Hi Vidushi and welcome.
    I'd
    Hi Vidushi and welcome.

    I'd say that everyone here has had the same symptoms as your mother. I'm sorry that she is sick as she is. I'm glad that Ray has been able to answer you so well. I've never had cancer seen anywhere except in the ascites. They've never found any tumour in me - yet! - and yes, it is seen as managed but not curable. But there are people here who have "managed" their peritoneal cancer for years so don't expect that because your mother has this cancer that she will automatically die soon.

    What I think *is* a good thing to do is for you and pehaps all her family to talk together about how you will manage whenever the day comes that she will die - not because she's got cancer, but from anything. If you live every day with fear then the quality of your life as well as hers is much worse for that.

    I'm sure that I sound stupid to expect you not to live with fear. I'm just thinking that the problem doesn't just come with having cancer. Besides, your mum could live for years as others here have done.

    Take good care,

    AussieMaddie

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