contact with eward

SOPHIE333
SOPHIE333 Member Posts: 92
in Peritoneal Cancer #1
Hi!
My name is Sophie, I live in Europe and my mum is staged with primary ppc stage IV since february 2011. I saw in an earlier note that your mum is in the same stage and has been since 2009. This seems encouraging to me, how is she doing today? Has she been in remission? What treatments has she had? Mum has had 8 rounds of carbo/taxol which is now not working anymore so at the moment she is on hormone tretment and will probably switch over to gemzar in mid-february if not still in remission. I would love to hear your experience so far.

Thank you,
Sophie

Comments

  • eward
    eward Member Posts: 210
    #2
    hello sophie
    After my mom's first round of chemo in 2009, she only had 3 months before she was back in treatment. Since then, she has literally gone from one chemo to the next without any breaks. She has been on taxol/carbo, taxotere/carbo, doxil, methotrexate/cytoxan, avastin, gemzar/cisplatin, alimta, and most recently was put back on taxol/carbo. (there might be one or two drugs I am forgetting) There have been many ups and downs. She has not been feeling well lately, but she started on weekly taxol/carbo last week and we are hopeful that this will help her to feel better and bring some of her symptoms back under control.

    My mom has found that being on more than one drug at a time helps her best. The gemzar/cisplatin combination helped her for several months. What they do for her is keep her on a drug until her CA125 starts climbing and/or her cat scan shows cancer growth.

    The good thing is that despite the difficult times, my mom has beaten many odds so far. I think a lot of this is the fact that she makes every attempt to be healthy. When she can get some exercise walking on her treadmill or doing tai chi, she does. She eats a very healthy diet, and has been encouraged especially to limit sugar intake. The Anti-Cancer Diet (book)is a good resource. She gets lots of rest. She takes at least one nap per day and sleeps well at night. So she balances rest with movement and activity. One hobby of hers is sewing and quilting and when she feels well enough she is back in her sewing room.

    I am curious to know what hormone treatment your mum is on? She absolutely must have a gyno-oncologist who is top in the field.

    Enough for now. I am not the best at checking this discussion board, so if I don't respond, please feel free to email me directly: ejward@ameritech.net

    Eileen
  • SOPHIE333
    SOPHIE333 Member Posts: 92
    #3
    eward said:

    hello sophie
    After my mom's first round of chemo in 2009, she only had 3 months before she was back in treatment. Since then, she has literally gone from one chemo to the next without any breaks. She has been on taxol/carbo, taxotere/carbo, doxil, methotrexate/cytoxan, avastin, gemzar/cisplatin, alimta, and most recently was put back on taxol/carbo. (there might be one or two drugs I am forgetting) There have been many ups and downs. She has not been feeling well lately, but she started on weekly taxol/carbo last week and we are hopeful that this will help her to feel better and bring some of her symptoms back under control.

    My mom has found that being on more than one drug at a time helps her best. The gemzar/cisplatin combination helped her for several months. What they do for her is keep her on a drug until her CA125 starts climbing and/or her cat scan shows cancer growth.

    The good thing is that despite the difficult times, my mom has beaten many odds so far. I think a lot of this is the fact that she makes every attempt to be healthy. When she can get some exercise walking on her treadmill or doing tai chi, she does. She eats a very healthy diet, and has been encouraged especially to limit sugar intake. The Anti-Cancer Diet (book)is a good resource. She gets lots of rest. She takes at least one nap per day and sleeps well at night. So she balances rest with movement and activity. One hobby of hers is sewing and quilting and when she feels well enough she is back in her sewing room.

    I am curious to know what hormone treatment your mum is on? She absolutely must have a gyno-oncologist who is top in the field.

    Enough for now. I am not the best at checking this discussion board, so if I don't respond, please feel free to email me directly: ejward@ameritech.net

    Eileen

    Hi Eileen!
    Thanks a lot for your answer! I think your mum is doing wounderful with her hobbies and getting through treatment and you are truly an inspiration to us. I will talk to mum again about diet and sugar, I know I have mentioned it but she is cheating now and then. She has always had a sweet tooth unfortunately.

    In all that happens, it is good to know that you are not alone and that we can compare treatments and side effects:-) I do not know exactly the name of the hormones, but I will look it up as soon as mum is back from holiday next week. She is getting it when in remission and have been told that the hormones kind of "shrinks" the seedings as the hormones works on "drying out" the seedings. I will definately give you more info as soon as I can. Yes, I thin her gyn onc is really good, the cancer center she is admitted to is the top in the country so we hope for good treatment. If you want to doublecheck anything, please feel free to ask and I will get information on it.

    We will also get an second opinion from another university hospital next month were a famous gyn onc has an agressive method of surgery on patients like mum which seems to prolong life for his patients. If she can be signed up for that, we would be very happy. Otherwise in Sweden, they do not debulk on stage IV for the reason of spreading.

    I hope your mum will continue on this rough journey with all the spirit she seems to have! Thank you for sharing and hope to hear from you again on how things are doing.

    Love,
    Sophie
  • eward
    eward Member Posts: 210
    #4
    SOPHIE333 said:

    Hi Eileen!
    Thanks a lot for your answer! I think your mum is doing wounderful with her hobbies and getting through treatment and you are truly an inspiration to us. I will talk to mum again about diet and sugar, I know I have mentioned it but she is cheating now and then. She has always had a sweet tooth unfortunately.

    In all that happens, it is good to know that you are not alone and that we can compare treatments and side effects:-) I do not know exactly the name of the hormones, but I will look it up as soon as mum is back from holiday next week. She is getting it when in remission and have been told that the hormones kind of "shrinks" the seedings as the hormones works on "drying out" the seedings. I will definately give you more info as soon as I can. Yes, I thin her gyn onc is really good, the cancer center she is admitted to is the top in the country so we hope for good treatment. If you want to doublecheck anything, please feel free to ask and I will get information on it.

    We will also get an second opinion from another university hospital next month were a famous gyn onc has an agressive method of surgery on patients like mum which seems to prolong life for his patients. If she can be signed up for that, we would be very happy. Otherwise in Sweden, they do not debulk on stage IV for the reason of spreading.

    I hope your mum will continue on this rough journey with all the spirit she seems to have! Thank you for sharing and hope to hear from you again on how things are doing.

    Love,
    Sophie

    debulking
    My mom has ancestors from Sweden! My grandmother's parents were both born there. Sadly, my mom had a trip planned to visit Sweden and it had to be cancelled due to her diagnosis.

    My mom did have debulking surgery before starting chemo in 2009. I am glad you are getting the opinion about surgery. I have read that it can make a big difference in treating this form of cancer.

    You are right, it does help a bit to know we are not alone. You take care of yourself and keep in touch! I wish you and your mom the best.
    xo
    Eileen

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