my next step

kayandok
kayandok Member Posts: 1,202 Member
edited March 2014 in Ovarian Cancer #1
I just got my CA125 (75 up from 18 in June) and PET/CT back. Still some pesky stuff lurking after 6 cycles of the cis/gem. Anyway, after a 3 month break, I will start the doxil September 3rd. Gotta go back and read up on all the stuff I need to prepare....

kathleen:)
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Comments

  • Lisa13Q
    Lisa13Q Member Posts: 677
    #2
    Thanks for the Update
    Sorry to hear there's still lurkers there, but you go get those nasties...I really believe in visualizing smashing the little buggers...to smithereens...Keep us posted. I light a candle in church every week for everyone here. I also have a friend from college who is a buddhist monk and she's chanting...with all the good vibes for you all, those little cells just can't grow...I'm praying for you..
  • saundra
    saundra Member Posts: 1,370 Member
    #3
    Join the Doxil group
    Sorry to hear about the numbers, Kathleen. I wish that I had not mentioned the carboplatin to my oncologist to take with the Doxil. That way I would know if the Doxil worked on my cells alone. The combination was harder too, I think, on the fatigue factor. That was really the only side effect I had with the first dose. Stay tuned for the second on the 4th of Sept. I did stay in loose robes and avoided hot showers and food and underwear. Coffee tasted awful for a week so I switched to English tea which was fine. Go figure. I did have some nausea feelings even with the pills and loss of appetite. Never tossed my cookies though. Thinking of you, Saundra
  • BonnieR
    BonnieR Member Posts: 1,526 Member
    #4
    Hugs
    Dearest Kathleen,

    I am sorry you have to start back on chemo already but did praise the Lord for your 3-month break. You'll be in my thoughts and prayers especially on the 3rd. ♥Hugs♥ Bonnie
  • kayandok
    kayandok Member Posts: 1,202 Member
    #5
    BonnieR said:

    Hugs
    Dearest Kathleen,

    I am sorry you have to start back on chemo already but did praise the Lord for your 3-month break. You'll be in my thoughts and prayers especially on the 3rd. ♥Hugs♥ Bonnie

    Thanks,
    gals for the encouragement! I have very mixed feelings, but since this is my only choice now, I will move onward. We are so limited for chemos here, that if this doesn't work, then I am faced with some very serious decisions...

    For now, I am taking it a day at at time.

    Kathleen
  • Lisa13Q
    Lisa13Q Member Posts: 677
    #6
    kayandok said:

    Thanks,
    gals for the encouragement! I have very mixed feelings, but since this is my only choice now, I will move onward. We are so limited for chemos here, that if this doesn't work, then I am faced with some very serious decisions...

    For now, I am taking it a day at at time.

    Kathleen

    Where is here?
    It concerns me if you are far from some of the great medical places that treat Ovarian cancer. Please keep us all posted as I bet there are many many ideas here. Take care of yourself.
  • kayandok
    kayandok Member Posts: 1,202 Member
    #7
    Lisa13Q said:

    Where is here?
    It concerns me if you are far from some of the great medical places that treat Ovarian cancer. Please keep us all posted as I bet there are many many ideas here. Take care of yourself.

    Japan
    Hi LIsa, I live in Japan and have flown back the the States many times in the last 2 years. My insurance is here and have done all the chemo treatment here. My story is a bit complicated but cancer complicates everyone's lives doesn't it? Just wish it could be a bit more simple.
    Take care,
    kathleen:)
  • Lisa13Q
    Lisa13Q Member Posts: 677
    #8
    Hmmmm A thought
    My mother's best friend has lived in Asia for years and her husband has had both colorectal cancer and now melanoma. I know his colorectal was treated somewhere over there and they were both highly impressed eatment. I will e-mail my mother and ask for Katie's e-mail just to see what that resource was and if it might be helpful for you. It can't hurt anyway. I know Katie was very pleased with his treatment. Good luck with the next go round, and yes cancer complicates/or simplifies (depending on your perspective) everyone's life. I know that my priorities have shifted deeply over the past month and my perspectives have also changed. Enjoying the people arounf you and not wasting time on things you don't care about is crucial. I'll be back with the resource.
  • kayandok
    kayandok Member Posts: 1,202 Member
    #9
    Lisa13Q said:

    Hmmmm A thought
    My mother's best friend has lived in Asia for years and her husband has had both colorectal cancer and now melanoma. I know his colorectal was treated somewhere over there and they were both highly impressed eatment. I will e-mail my mother and ask for Katie's e-mail just to see what that resource was and if it might be helpful for you. It can't hurt anyway. I know Katie was very pleased with his treatment. Good luck with the next go round, and yes cancer complicates/or simplifies (depending on your perspective) everyone's life. I know that my priorities have shifted deeply over the past month and my perspectives have also changed. Enjoying the people arounf you and not wasting time on things you don't care about is crucial. I'll be back with the resource.

    Thanks,
    Lisa, for you kindness. My story is on the my profile, so I won't bore you with details. There are good resources here and I have one of the best oncologist in Japan. OVCA is not very common her and there are not as many chemos approved for OVCA, like in the States. For example, we have avastin but it is only approved for colon cancer. I am still trying to scheme a way get it....

    Where in Asia did your friend live?

    K:)
  • saundra
    saundra Member Posts: 1,370 Member
    #10
    kayandok said:

    Thanks,
    Lisa, for you kindness. My story is on the my profile, so I won't bore you with details. There are good resources here and I have one of the best oncologist in Japan. OVCA is not very common her and there are not as many chemos approved for OVCA, like in the States. For example, we have avastin but it is only approved for colon cancer. I am still trying to scheme a way get it....

    Where in Asia did your friend live?

    K:)

    Keep asking for new chemos
    They do get medications approved there. My son is now on a medication that has not been approved for his type of arthritis so it does happen in Japan so keep trying. They are even letting him give his own injections at home instead of going into the major hospital every two weeks. So out of the normal treatments can be obtained there. Over all, he is pretty pleased with the health system there but will have to come back to the states for surgery as you did, which will happen next year. Here's praying the Doxil is the killer we hope for!!!! Saundra
  • kayandok
    kayandok Member Posts: 1,202 Member
    #11
    saundra said:

    Keep asking for new chemos
    They do get medications approved there. My son is now on a medication that has not been approved for his type of arthritis so it does happen in Japan so keep trying. They are even letting him give his own injections at home instead of going into the major hospital every two weeks. So out of the normal treatments can be obtained there. Over all, he is pretty pleased with the health system there but will have to come back to the states for surgery as you did, which will happen next year. Here's praying the Doxil is the killer we hope for!!!! Saundra

    Yes,
    I plan on pushing the envelope as far as I can. I have been pleased overall too, and have gotten many things through that are not standard here. I guess the avastin is so pricey and rare still, that my doc is afraid of getting his license yanked if he gives it to me. He would have to re-dx me with colon cancer. There have to be other chemos here though that we have in the US that they use here (under a different name) for other cancer's that I could get. Anyway, I'm on a mission to see if I can find one or two or three. To give me more time...
    Take care, kathleen:)
  • Lisa13Q
    Lisa13Q Member Posts: 677
    #12
    Hong Kong
    My mother's friend, Katie, said that her husband had all his surgeries in Hong Kong and they were fabulous (if that can be fabulous). That's not going to be helpful to you though. Keep us posted.
  • kayandok
    kayandok Member Posts: 1,202 Member
    #13
    Lisa13Q said:

    Hong Kong
    My mother's friend, Katie, said that her husband had all his surgeries in Hong Kong and they were fabulous (if that can be fabulous). That's not going to be helpful to you though. Keep us posted.

    Yes,
    Hong Kong is a whole different place and my insurance is only for Japan.
    THanks Lisa, for checking.
    I go in today to confirm the doxil etc. My neuropathy is still so bad, I am trying to figure out how to give myself a bit more time before hitting the ol' bod again withe the intense chemo bombs.
    Will keep you posted,
    kathleen:)
  • BonnieR
    BonnieR Member Posts: 1,526 Member
    #14
    kayandok said:

    Yes,
    Hong Kong is a whole different place and my insurance is only for Japan.
    THanks Lisa, for checking.
    I go in today to confirm the doxil etc. My neuropathy is still so bad, I am trying to figure out how to give myself a bit more time before hitting the ol' bod again withe the intense chemo bombs.
    Will keep you posted,
    kathleen:)

    neuropathy
    Hi Kathleen, well be sending up extra prayers for you today and the doxil doesn't cause more neuropathy so that is a good thing. Just follow all the instructions for hand/foot syndroym. Hugs Bonnie
  • kayandok
    kayandok Member Posts: 1,202 Member
    #15
    BonnieR said:

    neuropathy
    Hi Kathleen, well be sending up extra prayers for you today and the doxil doesn't cause more neuropathy so that is a good thing. Just follow all the instructions for hand/foot syndroym. Hugs Bonnie

    Thanks,
    Bonnie, I just found that out today, and was relieved. Got everything scheduled and need to stalk up on the ice!
    It is still hot here, so I am in berky style sandels all the time, but I can't walk in sneakers or shoes. I hope this neuropathy will start getting better soon, otherwise i will be in berkies and socks all winter. Oh well, everyone will know I'm from Seattle for sure...lol
    k:)
  • BonnieR
    BonnieR Member Posts: 1,526 Member
    #16
    kayandok said:

    Thanks,
    Bonnie, I just found that out today, and was relieved. Got everything scheduled and need to stalk up on the ice!
    It is still hot here, so I am in berky style sandels all the time, but I can't walk in sneakers or shoes. I hope this neuropathy will start getting better soon, otherwise i will be in berkies and socks all winter. Oh well, everyone will know I'm from Seattle for sure...lol
    k:)

    sandles and socks here too
    Yuo made me smile about the sandles.. when I wear my sneakers my neuropathy is worse too and sandles and socks for me at times even in the winter if the snow isn't too deep. :-)
  • lnyeholt
    lnyeholt Member Posts: 59
    #17
    kayandok said:

    Thanks,
    Bonnie, I just found that out today, and was relieved. Got everything scheduled and need to stalk up on the ice!
    It is still hot here, so I am in berky style sandels all the time, but I can't walk in sneakers or shoes. I hope this neuropathy will start getting better soon, otherwise i will be in berkies and socks all winter. Oh well, everyone will know I'm from Seattle for sure...lol
    k:)

    Cute hat!
    If you wear that great cap, no one will notice what's on your reet anyway!

    Lyn
  • kayandok
    kayandok Member Posts: 1,202 Member
    #18
    lnyeholt said:

    Cute hat!
    If you wear that great cap, no one will notice what's on your reet anyway!

    Lyn

    You are right,
    just need to keep the focus positive.... :)
  • Lisa13Q
    Lisa13Q Member Posts: 677
    #19
    kayandok said:

    You are right,
    just need to keep the focus positive.... :)

    Positive Positive Positive
    There is so much research that is being done out there. I saw my doctor today and s/he told me that they change the protocols every week because there is so much that we are learning about this disease...They are trying so hard.....Next summer, I want to travel all over and I want to come and meet you in Japan...sooo there now if that isn't something to look forward to, well I just don't know what is!! :) LOL
  • Lisa13Q
    Lisa13Q Member Posts: 677
    #20
    kayandok said:

    You are right,
    just need to keep the focus positive.... :)

    Positive Positive Positive
    There is so much research that is being done out there. I saw my doctor today and s/he told me that they change the protocols every week because there is so much that we are learning about this disease...They are trying so hard.....Next summer, I want to travel all over and I want to come and meet you in Japan...sooo there now if that isn't something to look forward to, well I just don't know what is!! :) LOL
  • kayandok
    kayandok Member Posts: 1,202 Member
    #21
    Lisa13Q said:

    Positive Positive Positive
    There is so much research that is being done out there. I saw my doctor today and s/he told me that they change the protocols every week because there is so much that we are learning about this disease...They are trying so hard.....Next summer, I want to travel all over and I want to come and meet you in Japan...sooo there now if that isn't something to look forward to, well I just don't know what is!! :) LOL

    Come on over!
    Looking forward to meeting you Lisa!
    Kathleen:)

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