Stage IV Primary Peritoneal

Paula2012
Paula2012 Member Posts: 5
in Peritoneal Cancer #1
I would just like some feedback on what some you other ladies might be going through at this point. My cancer is now in the liver and possibly the lungs. We are trying new chemo drugs, but the last 3 have failed. I am really having a hard time keeping the faith right now.

Comments

  • PatsieD
    PatsieD Member Posts: 99
    #2
    Stage IV
    I have Stage 4 to the liver and lungs. However, I did have a partial response last year and hope to have the same treatment when it recurs. There has been some growth but not enough to start treatment yet. Sometimes the drugs fail and others just hit the mark. That's what I know from this site. Please don't lose hope because it's hard to deal with when that happens. My nurse specialist says there are new drugs coming out all the time and still others to use still on the horizon....
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #3
    I am stage 4 too
    I was diagnosed with fluid around my lungs nearly 3 years ago. I had a partial response from Carbo/taxol but my numbers did go down to 34 at the time. I have now had about 6 different chemos in the 3 years and my cancer & numbers have had various responses. Doxil/Cealyx never worked for me but others did.

    I think it is all trial and eror as we are all different and your consultant doesn't know what will work until they try it. I am now on Cisplatin. It is a very strong chemo and has given me bad side effects BUT it is working and my numbers are falling.

    Don't loose faith as there will be a chemo out there that will work for you.

    Let me know which chemos have failed. Like I said I have had 5 different regimes and we can compare notes.

    Tina xx
  • Paula2012
    Paula2012 Member Posts: 5
    #4
    Tina Brown said:

    I am stage 4 too
    I was diagnosed with fluid around my lungs nearly 3 years ago. I had a partial response from Carbo/taxol but my numbers did go down to 34 at the time. I have now had about 6 different chemos in the 3 years and my cancer & numbers have had various responses. Doxil/Cealyx never worked for me but others did.

    I think it is all trial and eror as we are all different and your consultant doesn't know what will work until they try it. I am now on Cisplatin. It is a very strong chemo and has given me bad side effects BUT it is working and my numbers are falling.

    Don't loose faith as there will be a chemo out there that will work for you.

    Let me know which chemos have failed. Like I said I have had 5 different regimes and we can compare notes.

    Tina xx

    Failed chemo
    I am like you and the Carbo/Taxol worked for awhile. It started spreading more to the liver and they began trying Gemzar and Topoteekan. The Gemzar lasted for a four or five rounds, and the Topoteekan for a couple, but then the liver metastasis really started to take off. They tried me on Alimta for 2 treatments and now I will take my second tx of Taxotere today. The peritoneal ca on my left side seems to be growing again, but the liver is what is really giving me the most grief now. I read somewhere that this cancer has a 100% morbidity rate. Wish we could be a "new statistic". Paula
  • Paula2012
    Paula2012 Member Posts: 5
    #5
    PatsieD said:

    Stage IV
    I have Stage 4 to the liver and lungs. However, I did have a partial response last year and hope to have the same treatment when it recurs. There has been some growth but not enough to start treatment yet. Sometimes the drugs fail and others just hit the mark. That's what I know from this site. Please don't lose hope because it's hard to deal with when that happens. My nurse specialist says there are new drugs coming out all the time and still others to use still on the horizon....

    Stage lV
    They have now diagnosed mine in the lungs yet, although my last CT was showing some places of interest. My liver mets is what is growing at such an alarming rate. I start a second tx of Taxotere today, and I hope I can see some results with that. I so wish I could find that "magical" one. What drug did you have the favorable response to last year?
  • PatsieD
    PatsieD Member Posts: 99
    #6
    Paula2012 said:

    Failed chemo
    I am like you and the Carbo/Taxol worked for awhile. It started spreading more to the liver and they began trying Gemzar and Topoteekan. The Gemzar lasted for a four or five rounds, and the Topoteekan for a couple, but then the liver metastasis really started to take off. They tried me on Alimta for 2 treatments and now I will take my second tx of Taxotere today. The peritoneal ca on my left side seems to be growing again, but the liver is what is really giving me the most grief now. I read somewhere that this cancer has a 100% morbidity rate. Wish we could be a "new statistic". Paula

    Morbidity
    I've been told by my doctor that there really is no cure for ppc but it can be managed . She also said that more research is needed and that morbidity rates published are way off key and there is hope of dealing with it as a chronic though difficult illness. I don't know whether she is too much of an optimist or not but I hope she's right.
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #7
    PatsieD said:

    Morbidity
    I've been told by my doctor that there really is no cure for ppc but it can be managed . She also said that more research is needed and that morbidity rates published are way off key and there is hope of dealing with it as a chronic though difficult illness. I don't know whether she is too much of an optimist or not but I hope she's right.

    I do believe she is right
    I do believe she is right. When I was diagnosed 3 years ago I was told the average life expectancy for me (I am PPC stage 4) was 8 - 18 months. Here I am 3 years later. I have been on and off chemo all of that time and am currently on a 4 week chemo break. My numbers are 225 which is amazing as they were 2,000 back in May this year.

    So yes, the disease can be managed as long as you can tolerate the chemo. I am a real fighter but I am struggling at the moment with nausea.

    Tina xxx
  • PatsieD
    PatsieD Member Posts: 99
    #8
    Tina Brown said:

    I do believe she is right
    I do believe she is right. When I was diagnosed 3 years ago I was told the average life expectancy for me (I am PPC stage 4) was 8 - 18 months. Here I am 3 years later. I have been on and off chemo all of that time and am currently on a 4 week chemo break. My numbers are 225 which is amazing as they were 2,000 back in May this year.

    So yes, the disease can be managed as long as you can tolerate the chemo. I am a real fighter but I am struggling at the moment with nausea.

    Tina xxx

    You
    I know you've been through a lot Tina... we have each other here don't we, and it's helped me through xx
  • PatsieD
    PatsieD Member Posts: 99
    #9
    Tina Brown said:

    I do believe she is right
    I do believe she is right. When I was diagnosed 3 years ago I was told the average life expectancy for me (I am PPC stage 4) was 8 - 18 months. Here I am 3 years later. I have been on and off chemo all of that time and am currently on a 4 week chemo break. My numbers are 225 which is amazing as they were 2,000 back in May this year.

    So yes, the disease can be managed as long as you can tolerate the chemo. I am a real fighter but I am struggling at the moment with nausea.

    Tina xxx

    You
    I know you've been through a lot Tina... we have each other here don't we, and it's helped me through xx
  • Paula2012
    Paula2012 Member Posts: 5
    #10
    Tina Brown said:

    I do believe she is right
    I do believe she is right. When I was diagnosed 3 years ago I was told the average life expectancy for me (I am PPC stage 4) was 8 - 18 months. Here I am 3 years later. I have been on and off chemo all of that time and am currently on a 4 week chemo break. My numbers are 225 which is amazing as they were 2,000 back in May this year.

    So yes, the disease can be managed as long as you can tolerate the chemo. I am a real fighter but I am struggling at the moment with nausea.

    Tina xxx

    Primary Peritoneal
    It has been awhile since I have been on the computer, but I just wanted to say "Thanks" to you for the encouraging words. At the end of Oct. another CT was done and the peritoneal cancer was continuing to grow, and the liver mets were growing even faster. I was started on Doxil Nov. 8 and have great hopes. I am so encouraged that you have outlived their expectations, and I hope I am as fortunate. What chemo meds have you taken?
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #11
    Paula2012 said:

    Primary Peritoneal
    It has been awhile since I have been on the computer, but I just wanted to say "Thanks" to you for the encouraging words. At the end of Oct. another CT was done and the peritoneal cancer was continuing to grow, and the liver mets were growing even faster. I was started on Doxil Nov. 8 and have great hopes. I am so encouraged that you have outlived their expectations, and I hope I am as fortunate. What chemo meds have you taken?

    Hi Paula
    Sorry I've been away, been in hospital having an ascitic drain.It didn't work but I will post about that later.

    You've asked me about chemo, well, here goes.

    Carbo/taxol x twice. Got good results with this and had 5 months remission with first one.
    Doxil/caelyx x twice. It failed both times
    Topotecan. This worked well and my numbers came down. However, they began to rise quickly after.
    Carboplatin single agent. Only managed 3 rounds and then I had an allergic reaction.
    The last one Cisplatin. 3 rounds and my CT scan showed a good result.

    It seems I have had that many I can't remember how each one worked. The cisplatin finished beginning of October & I have ascites so my doctor is giving me Etopocide next.

    Take care Tina xx

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