My wife was just diagnosed with peritoneal carcinoma with ascides

55Karlotta
55Karlotta Member Posts: 7
edited July 2012 in Peritoneal Cancer #1
my wife was just diagnosed with peritoneal carcinoma with ascides stage 3c she just took her first round of treatment on fri Taxol and Carboplatinum what can we expect we are both scared

Comments

  • PatsieD
    PatsieD Member Posts: 99
    #2
    just diagnosed
    Welcome to this board. When I was diagnosed, I had ascites too which was drained and I was staged at 3c at the time. I wasn't put on taxol but had carboplatin on its own. I felt exhausted after each round but a little better by the third week. We tried to fit in a trip somewhere during that time as a treat. We'd just go off somewhere. Even a short run in the car was good and just sit there with a thermos flask of coffee. Having no energy all the time was a problem but this improved after I'd finished the treament. I still get very tired but I manage this by trying to keep busy. When I'm really exhausted, I just give in to it and sleep for an hour or so. I felt so low at the time I was diagnosed that I didn't get much joy from anything I did. It's very hard isn't it. I had a partial response to treatment as my disease was reduced. I have low grade cancer which grows slowly but I'm at an advanced stage. Unfortunately, my type of cell is platinum resistant and I may not respond to the drug next time round. My response was considered to be a good one though given the circumstances. I'm much more positive although I know I'll have to have more treatment. I take each day as it comes. Many women on this site have had good responses to treatment and are living their lives in positive ways. When I was first diagnosed, I thought I was in a hopeless situation. I very much wish you and your family well.
  • PatsieD
    PatsieD Member Posts: 99
    #3
    just diagnosed
    I re-read my earlier post. I meant to say that although I might not respond to carboplatin next time, there are other drugs out there and new ones are being created and tested all the time.
  • 55Karlotta
    55Karlotta Member Posts: 7
    #4
    PatsieD said:

    just diagnosed
    Welcome to this board. When I was diagnosed, I had ascites too which was drained and I was staged at 3c at the time. I wasn't put on taxol but had carboplatin on its own. I felt exhausted after each round but a little better by the third week. We tried to fit in a trip somewhere during that time as a treat. We'd just go off somewhere. Even a short run in the car was good and just sit there with a thermos flask of coffee. Having no energy all the time was a problem but this improved after I'd finished the treament. I still get very tired but I manage this by trying to keep busy. When I'm really exhausted, I just give in to it and sleep for an hour or so. I felt so low at the time I was diagnosed that I didn't get much joy from anything I did. It's very hard isn't it. I had a partial response to treatment as my disease was reduced. I have low grade cancer which grows slowly but I'm at an advanced stage. Unfortunately, my type of cell is platinum resistant and I may not respond to the drug next time round. My response was considered to be a good one though given the circumstances. I'm much more positive although I know I'll have to have more treatment. I take each day as it comes. Many women on this site have had good responses to treatment and are living their lives in positive ways. When I was first diagnosed, I thought I was in a hopeless situation. I very much wish you and your family well.

    Thanks PatsieD she is very
    Thanks PatsieD she is very tired and weak because she just did her treatment last friday She is taking Taxol and Carboplatinum
  • 55Karlotta
    55Karlotta Member Posts: 7
    #5
    PatsieD said:

    just diagnosed
    I re-read my earlier post. I meant to say that although I might not respond to carboplatin next time, there are other drugs out there and new ones are being created and tested all the time.

    does anyone have any
    does anyone have any prognosis for th
    is disease
  • 55Karlotta
    55Karlotta Member Posts: 7
    #6
    PatsieD said:

    just diagnosed
    I re-read my earlier post. I meant to say that although I might not respond to carboplatin next time, there are other drugs out there and new ones are being created and tested all the time.

    does anyone have any
    does anyone have any prognosis for th
    is disease
  • Best Friend
    Best Friend Member Posts: 222
    #7
    55Karlotta said:

    Thanks PatsieD she is very
    Thanks PatsieD she is very tired and weak because she just did her treatment last friday She is taking Taxol and Carboplatinum

    hi
    Chemo sucks. What i learned on here is to just help out. If u feel like u can't watch anymore, come on here and let it all out. These women have got me through the worst of days. They are wonderful. And i complain about stuff and they are the ones going through the disease. Carbo/taxol worked well for my mom. She had more trouble from the neulasta shot they give you to keep ur white blood cells up. Felt like someone beat her up in an alley she said. She was nauseous but she never really threw up. The movies make it out to be totally different. It's poison they put in you. I read a book called the origin of cancer. They basically started chemo out by just trying combos of stuff. One of the first ones used was mustard gas. To this day they still use some form of this. So, you could just imagine having this in ur body. Toxic. I know. But, it is what kills this stuff. Get her through this. Make her food. If she doesn't eat it tell her to take a bite. Make toast, get her up, just be there to talk.
  • PatsieD
    PatsieD Member Posts: 99
    #8
    prognosis
    Hi there again. It depends on the cell type and the stage a person is put at. The first thing I did was to read the statistics which is not a good thing. I found that for me, where I am and my cell type, the prognosis was poor. Not a lot is known about this disease in fact. I was told by my first oncologist that I could expect to live several months to two years without treatment and that the treatment could not be seen to be effective. However, I did have a partial response as I've said. I'm coming up to 10 months post end of chemo and I'm much better than I was after diagnosis. I'm sorry I searched for answers because non of them fitted where I'm at. I've also found that that new drugs are being used all the time and the news is encouraging for a lot of people with this disease. People here (both men and women) have been very supportive of me and have given hope which I didn't have at the beginning. For some types of cell, the prognosis is, in fact, very good.
  • lulu1010
    lulu1010 Member Posts: 367
    #9
    PatsieD said:

    prognosis
    Hi there again. It depends on the cell type and the stage a person is put at. The first thing I did was to read the statistics which is not a good thing. I found that for me, where I am and my cell type, the prognosis was poor. Not a lot is known about this disease in fact. I was told by my first oncologist that I could expect to live several months to two years without treatment and that the treatment could not be seen to be effective. However, I did have a partial response as I've said. I'm coming up to 10 months post end of chemo and I'm much better than I was after diagnosis. I'm sorry I searched for answers because non of them fitted where I'm at. I've also found that that new drugs are being used all the time and the news is encouraging for a lot of people with this disease. People here (both men and women) have been very supportive of me and have given hope which I didn't have at the beginning. For some types of cell, the prognosis is, in fact, very good.

    55 Karlotta
    If you read the statistics it is not very good news. It is a very persistant cancer that keeps coming back. That said, it is getting to be more of a chronic illness. They cant cure it but can keep beating it back and in some cases for a very long time. There are cases where it has not returned. If it recurs it probably will never go away. I did hear of a lady who had a 12 year remission after a reoccurance. There seems to be a lot of research and drug trials going on so my theory is just stay alive till they find a cure! Take one day at a time and one treatment at a time and find a way to incorporate as much of your normal life as you can into your new routine. Any questions please feel free to ask. I find comfort also in the web site Inspire.com and read the survival stories.
    Hugs!
    Linda
  • Best Friend
    Best Friend Member Posts: 222
    #10
    hi
    The prognosis is terrible but the first doc who found the cancer was a general surgeon. He admitted he wasn't very informed on this type of cancer. He said he had never seen it before in 34 years of surgery. He just said it was hopeless. 6 months, 9 months. Than we saw her oncologist and he said well if it's type a)mullerian than its treatable. Then there was a different type. Luckily my mom had a shot. And i am not saying she is gonna live 10 more years or even 5 but last summer my mom was dying and this summer she helped me put up a swimming pool and traveled through disney world. And in september(knock on wood)she goes back to work full time. The oncologist promised me he would do what he could. Every single person is different. But if u google this cancer you will end up very sad. So just come on here and see these stories.
  • 55Karlotta
    55Karlotta Member Posts: 7
    #11
    Best Friend said:

    hi
    The prognosis is terrible but the first doc who found the cancer was a general surgeon. He admitted he wasn't very informed on this type of cancer. He said he had never seen it before in 34 years of surgery. He just said it was hopeless. 6 months, 9 months. Than we saw her oncologist and he said well if it's type a)mullerian than its treatable. Then there was a different type. Luckily my mom had a shot. And i am not saying she is gonna live 10 more years or even 5 but last summer my mom was dying and this summer she helped me put up a swimming pool and traveled through disney world. And in september(knock on wood)she goes back to work full time. The oncologist promised me he would do what he could. Every single person is different. But if u google this cancer you will end up very sad. So just come on here and see these stories.

    Serous Adenocarcinoma of the Endometrium
    Just found out that my wife was diagnosed wrong and she has Serous Adenocarcinoma of the
    Endometrium does anybody know this cancer
  • wanttogetwellsoon
    wanttogetwellsoon Member Posts: 147
    #12
    55Karlotta said:

    Serous Adenocarcinoma of the Endometrium
    Just found out that my wife was diagnosed wrong and she has Serous Adenocarcinoma of the
    Endometrium does anybody know this cancer

    serous adenocarcinoma
    Hi there again...

    I don't know much of this disease other than I know that growths in the endometrium can originate in the fallopian tube just as is the case for peritoneal cancer. A few years ago, I had a cystadenoma. I don't know how it began but it was said to have been of ovarian origin. When I told my doctor that I had no ovaries as I'd had a hysterectomy, I was told that the cyst could have grown from tissue remnants. I was 17lb lighter the day after the operation to remove it. Whilst operating, the general surgeon (there were two teams... the general and the gynae)took out a section of small bowel which was not healthy. Eventually, I got out the truth that it was suspicious tissue. It's a long story, but now I have papillary serous carcinoma of the peritoneum. It's hard to trace where or why some cancers follow a particular pathway but researchers are working on this. What I do know is that if you look on the web, you'll find all sorts of information which may upset you. Even within categories of cancers, there are different sub-types. Some are very slow growing which would be good news. Other cancers, which are faster growing, respond very well to treatment. So there is hope. For me, I wanted to find out where I was at but even given the information, it took quite a while for me to really understand what was going on. Good thoughts are sent to you and your family. :)
  • iamsopositive
    iamsopositive Member Posts: 4
    #13
    PatsieD said:

    prognosis
    Hi there again. It depends on the cell type and the stage a person is put at. The first thing I did was to read the statistics which is not a good thing. I found that for me, where I am and my cell type, the prognosis was poor. Not a lot is known about this disease in fact. I was told by my first oncologist that I could expect to live several months to two years without treatment and that the treatment could not be seen to be effective. However, I did have a partial response as I've said. I'm coming up to 10 months post end of chemo and I'm much better than I was after diagnosis. I'm sorry I searched for answers because non of them fitted where I'm at. I've also found that that new drugs are being used all the time and the news is encouraging for a lot of people with this disease. People here (both men and women) have been very supportive of me and have given hope which I didn't have at the beginning. For some types of cell, the prognosis is, in fact, very good.

    prognosis
    Patsie, can i ask what type of peritoneal cancer you have? My dear husband was diagnosed with Signet cell (the most aggressive type) in Aug 2012. He is on his 2nd round of chemo with Eloxatin/ Xeloda and after 3cycles, he is sched. to have cytoreduction/ HIPEC surgery. His doctor suggested chemo to help shrink the tumor prior to the surgery. I am so hoping his cancer is responding to the chemo. I am so scared on a daily basis, knowing all the stats on this terrible disease. Please tell me how you have responded to the chemo and surgery. Any small details that would help me in my struggle as I go this very very long difficult path would be appreciated. I need to know that there IS LIFE after this cancer. I have joined a very good support group which has been lifesaving, but still i find myself constantly searching for more and more longterm survivors of this cancer. A response would be very appreciative.
  • seatown
    seatown Member Posts: 261 Member
    #14
    55Karlotta said:

    Serous Adenocarcinoma of the Endometrium
    Just found out that my wife was diagnosed wrong and she has Serous Adenocarcinoma of the
    Endometrium does anybody know this cancer

    Peritoneum? Endometrium?
    Hello--So sorry to hear of your wife's diagnosis. I was diagnosed with what my oncologist now calls peritoneal carcinomatosis about a week after your wife was diagnosed. But originally, a gastroenterologist called it adenocarcinoma, possibly arising from endometrial tissue. My point: I think there may be multiple names for the same or very similar conditions. If your wife's treatment program hasn't changed, IMHO it may be just a matter of personal preference in terminology.

    If your wife is still on carboplatin & taxol, those are the same chemo drugs I'm getting. I've responded well to chemo -- you can read the details at CaringBridge.org/visit/CaroleSeaton -- & have had only one troubling side effect. I experienced neuropathy, or numbness & tingling in my limbs. With a slightly reduced chemo schedule, that issue seems to be resolving itself. I've also become anemic, but that's being addressed. Otherwise I've felt much better than I expected to on chemo. If your wife is able, I would enthusiastically second the suggestion of others that you try to find some regular diversions & enjoy each day she feels well enough to pursue them.

    Good luck! May we all survive long enough to see a cure.

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