LindaP

nancy591
nancy591 Member Posts: 1,027 Member
in Ovarian Cancer #1
In reply to your post under my original post regarding treatment. I think my onc wanted to start with avastin/cytoxan because it is gentler. If that worked I'd still have Taxol in my pocket. I am still not 100% it wasn't working. I didn't have a beginning treatment ca125 drawn. My lastest ca125 was 2wks prior to starting that regimen. so, my post cytoxan/avstin ca125 had 2 additional weeks with no treatment added on to it. Is it possible my ca125 was higher and then came down, I don't know.

On the upside, Gemzar did hold me stable but did not shrink my areas. My last scan while on Gemzar showed very minimal growth. I decided to end that treatment to go into the trial. Actually my onc recommended I go into the trial because he was afraid it would close. Gemzar, Topo and the others DO WORK on some people.

Good luck on your scan.

Comments

  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    #2
    Thanks, Nancy! Can't wait to see what we try next.
    Sounds like you could go back to Gemzar and maybe even Cytoxan. Here's what I've been thinking: as long as we are symptom-free, then all we REALLY need the chemo to do is hold us STABLE,...am I right?? Because if we are symptom-free, that's a pretty darn good imitation of 'healthy'. So all we each need to do is lock into something that holds us STABLE. & if it happens to knock the tumors back, all the better!!

    & I am sincere that I think Taxol/Avastin has the potential and power to be the combo that kicks you into remission!! Your cancer is still so small, and taxol was the magic bullet for me TWICE that got me to NED. & I always felt good on taxol, just a little fatigued and bald, but still a good quality of life chemo for me.

    Thanks for your encouragement. I still believe we have some time left, years even. I'm glad my affairs are all in order and that I'm not dealing with all that painful drama from a sick bed. & I know you have all that "when-I'm-gone" stuff done, too. Now we can just focus on LIVING!! & that's good! (((Nancy)))
  • nancy591
    nancy591 Member Posts: 1,027 Member
    #3
    lindaprocopio said:

    Thanks, Nancy! Can't wait to see what we try next.
    Sounds like you could go back to Gemzar and maybe even Cytoxan. Here's what I've been thinking: as long as we are symptom-free, then all we REALLY need the chemo to do is hold us STABLE,...am I right?? Because if we are symptom-free, that's a pretty darn good imitation of 'healthy'. So all we each need to do is lock into something that holds us STABLE. & if it happens to knock the tumors back, all the better!!

    & I am sincere that I think Taxol/Avastin has the potential and power to be the combo that kicks you into remission!! Your cancer is still so small, and taxol was the magic bullet for me TWICE that got me to NED. & I always felt good on taxol, just a little fatigued and bald, but still a good quality of life chemo for me.

    Thanks for your encouragement. I still believe we have some time left, years even. I'm glad my affairs are all in order and that I'm not dealing with all that painful drama from a sick bed. & I know you have all that "when-I'm-gone" stuff done, too. Now we can just focus on LIVING!! & that's good! (((Nancy)))

    combo
    Yes, I was told that Gemzar could be an option for me in the future. I was just thinking about how good I feel and how I want to maybe go somewhere...again. I do have some bowel issues but I think they have really improved. I think that clinical trial medication I was on had some effect on my bowels. But I still do have some issues like gas and constipation. The constipation thing is new for me as my problem has been the opposite. is it the chemo or the cancer....thats the question. But I am grateful that I am feeling strong. I too am optimistic that the Taxol will work. I will be going either 2wks or 3wks on, not sure yet.

    Yes I did alot of 'when I'm gone stuff'. It was important for me to do it when I was looking and feeling good. I certainly didn't want any death bed videos. Call vain but my children are young and I want them to have nice videos of me. Now that I know I will be going bald again I feel like making more videos. Although I think what is there left to say? I might video chronicle this new treatment and my battle here on out. Too morbid? I don't know. I went out today and bought a bunch of birthday cards and graduation cards. I also bought my daughter a graduation gift as she will be graduating college 2012. Some people might think it is being negative but I look at it as planning ahead.
  • antcat
    antcat Member Posts: 270
    #4
    nancy591 said:

    combo
    Yes, I was told that Gemzar could be an option for me in the future. I was just thinking about how good I feel and how I want to maybe go somewhere...again. I do have some bowel issues but I think they have really improved. I think that clinical trial medication I was on had some effect on my bowels. But I still do have some issues like gas and constipation. The constipation thing is new for me as my problem has been the opposite. is it the chemo or the cancer....thats the question. But I am grateful that I am feeling strong. I too am optimistic that the Taxol will work. I will be going either 2wks or 3wks on, not sure yet.

    Yes I did alot of 'when I'm gone stuff'. It was important for me to do it when I was looking and feeling good. I certainly didn't want any death bed videos. Call vain but my children are young and I want them to have nice videos of me. Now that I know I will be going bald again I feel like making more videos. Although I think what is there left to say? I might video chronicle this new treatment and my battle here on out. Too morbid? I don't know. I went out today and bought a bunch of birthday cards and graduation cards. I also bought my daughter a graduation gift as she will be graduating college 2012. Some people might think it is being negative but I look at it as planning ahead.

    chemo combo effect
    Hi Nancy, just wanted to let you know that first of all I think you are an incredibly strong person and sometimes wish I could be like you. You have to keep hopeful because from what I understand by the oncologist I used to go to, she told me alot of new drugs are going to be coming out for ovarian cancer.

    As far as the constipation thing, I too have that everytime I go on chemotherapy.
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    #5
    antcat said:

    chemo combo effect
    Hi Nancy, just wanted to let you know that first of all I think you are an incredibly strong person and sometimes wish I could be like you. You have to keep hopeful because from what I understand by the oncologist I used to go to, she told me alot of new drugs are going to be coming out for ovarian cancer.

    As far as the constipation thing, I too have that everytime I go on chemotherapy.

    I did the card thing for my grandkids: birthdays & Xmas.
    I don't think I'm going to do any more 'planning/memories' stuff for my family. I feel good that it's done and don't want to feel anxious that I am mid-way through a new project and then feel too ill to finish it. I tried to write something meaningful in each birthday card for my grandkids the next 11 years for each, imagining them at those ages and what they might be dealing with then. I did Christmas cards, too, for each year. I put $$ in every card because, as grandma, I always bought them what they wanted most. (& now that I don't have to save for retirement, I have so much more $$!)I don't think a mother needs to leave $$ behind, just her loving words. I cashed a CD and pumped up their college accounts. I had all my good jewelry cleaned, the stones tightened, and did little cards that say who gets what and put that back in the safe. I may start handing out the jewelry this year on birthdays if I'm still feeling good enough that it won't freak them out or sadden them to get this stuff now. My will is updated and my business succession plan is almost complete. That adds to my peacefulness, as I know it does yours, Nancy. But I am not planning to re-visit my efforts again.

    The funny thing is, when I did the cards, I was a little worried to be starting the first one with Jakey's March 2011 birthday, thinking maybe I should start it with Emily's December 2010 birthday. Now I'm pretty confident that I'll be opening that card in March myself and using the $$ in it towards the flat screen I want to get him for his room for his birthday. I had to crawl under the bed to get out the family heirloom Xmas ornaments this Christmas and it was fun to know I was here another Christmas. I think digging out and opening the cards myself as the occasions arrive, and I'm still here, will be a small celebration of life in itself! We'll BOTH be doing that in 2011, Nancy!! & beyond 2011!
  • nancy591
    nancy591 Member Posts: 1,027 Member
    #6
    lindaprocopio said:

    I did the card thing for my grandkids: birthdays & Xmas.
    I don't think I'm going to do any more 'planning/memories' stuff for my family. I feel good that it's done and don't want to feel anxious that I am mid-way through a new project and then feel too ill to finish it. I tried to write something meaningful in each birthday card for my grandkids the next 11 years for each, imagining them at those ages and what they might be dealing with then. I did Christmas cards, too, for each year. I put $$ in every card because, as grandma, I always bought them what they wanted most. (& now that I don't have to save for retirement, I have so much more $$!)I don't think a mother needs to leave $$ behind, just her loving words. I cashed a CD and pumped up their college accounts. I had all my good jewelry cleaned, the stones tightened, and did little cards that say who gets what and put that back in the safe. I may start handing out the jewelry this year on birthdays if I'm still feeling good enough that it won't freak them out or sadden them to get this stuff now. My will is updated and my business succession plan is almost complete. That adds to my peacefulness, as I know it does yours, Nancy. But I am not planning to re-visit my efforts again.

    The funny thing is, when I did the cards, I was a little worried to be starting the first one with Jakey's March 2011 birthday, thinking maybe I should start it with Emily's December 2010 birthday. Now I'm pretty confident that I'll be opening that card in March myself and using the $$ in it towards the flat screen I want to get him for his room for his birthday. I had to crawl under the bed to get out the family heirloom Xmas ornaments this Christmas and it was fun to know I was here another Christmas. I think digging out and opening the cards myself as the occasions arrive, and I'm still here, will be a small celebration of life in itself! We'll BOTH be doing that in 2011, Nancy!! & beyond 2011!

    cards...
    Did you end each of the cards on a specific birthday year? Did you tell them in the card that this will be their last card? 11 cards each x the number of Grandkids is a lot of cards for you!!! I only bought a handful but if I buy them a card for each birthday through age 21...thats a lot of cards!!!! That will cost a small fortune in of itself.
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    #7
    nancy591 said:

    cards...
    Did you end each of the cards on a specific birthday year? Did you tell them in the card that this will be their last card? 11 cards each x the number of Grandkids is a lot of cards for you!!! I only bought a handful but if I buy them a card for each birthday through age 21...thats a lot of cards!!!! That will cost a small fortune in of itself.

    I bought boxes of assorted b-day & Xmas cards w/garden theme.
    My grandkids have always gardened with me, so I found some boxed card assortments with garden themes and that made the cards really affordable. It took me a few months to come up with enough $$ to include in each, but I just added the $$ to the cards (sealing the envelopes) as I got it. I did 11 birthday cards and 11 Xmas cards for each, so it's a pretty big stack of 44 cards. I don't remember if I said in the last one (the Xmas Jakey is 18) that this would be the last, probably not. Maybe I'll still be here to open it MYSELF and see! HA! My guess is that the $$ I put in there may not be worth too much in 11 years. But it gave me a chance to imagine them each at the various ages and assure them each year that my love for them lives on and on.

    But the cards are just extra, and certainly not necessary. I know that they will remember me when they crimp pie shells or harvest carrots or eat tomatoes warm from the sun or make flower arrangements or cut jack-o-lanterns. I know they will play Pirate Battles in the pool with their own kids and remember me, and that they will let their kids eat icicles and sweet clover and pet bumblebees and catch toads and spiders because I always let them, and that they will know one bird from another, one flower from another, because of me. I like to think that they learned about the cycle of life from me and share my peace with life's journey, and that they believe they have a family in heaven waiting for them when they get old.

    I'm sure your children will never forget you, Nancy. I've heard my grandkids telling their friends about special things I did with them when they were in preschool, little outrageous things that only I would have thought of to do. & You'll be with them a long while yet; I;m also sure of that!
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    #8
    lindaprocopio said:

    I bought boxes of assorted b-day & Xmas cards w/garden theme.
    My grandkids have always gardened with me, so I found some boxed card assortments with garden themes and that made the cards really affordable. It took me a few months to come up with enough $$ to include in each, but I just added the $$ to the cards (sealing the envelopes) as I got it. I did 11 birthday cards and 11 Xmas cards for each, so it's a pretty big stack of 44 cards. I don't remember if I said in the last one (the Xmas Jakey is 18) that this would be the last, probably not. Maybe I'll still be here to open it MYSELF and see! HA! My guess is that the $$ I put in there may not be worth too much in 11 years. But it gave me a chance to imagine them each at the various ages and assure them each year that my love for them lives on and on.

    But the cards are just extra, and certainly not necessary. I know that they will remember me when they crimp pie shells or harvest carrots or eat tomatoes warm from the sun or make flower arrangements or cut jack-o-lanterns. I know they will play Pirate Battles in the pool with their own kids and remember me, and that they will let their kids eat icicles and sweet clover and pet bumblebees and catch toads and spiders because I always let them, and that they will know one bird from another, one flower from another, because of me. I like to think that they learned about the cycle of life from me and share my peace with life's journey, and that they believe they have a family in heaven waiting for them when they get old.

    I'm sure your children will never forget you, Nancy. I've heard my grandkids telling their friends about special things I did with them when they were in preschool, little outrageous things that only I would have thought of to do. & You'll be with them a long while yet; I;m also sure of that!

    OH, about that graduation 2012 gift...
    I started buying Christmas 2011 gifts already, starting with the after-Christmas sales. That's not unusual for me, but the unusual part is that I'm thinking of going ahead and wrapping and tagging them as I go this year. So I fully understand the graduation gift motivation. Even though we BOTH will be here to give those gifts OURSELVES to our loved ones, I know it'll bug me (on days I feel crappy) if I think that Vic won't know who each gift should go to if I'm gone. That all sounds so horribly morbid, but somehow I think you, out of everyone else, can understand how comforting it is to have every detail neatly tied up. Like somehow I can keep on being relevant even if I'm not here, like maybe it extends my presence on this earth 'by proxy'. And I know how fabulous we will both feel to snicker privately at our own foolishness when we personally hand out our would-be 'gifts from the grave'! HA! (((Nancy)))

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