Question for Sandy (Green50)

lizper
lizper Member Posts: 199
edited March 2014 in Ovarian Cancer #1
Hi Sandy I couldn`t help to read all the chemos you have been through the past 7 years. Can you tell me how long was your remission after your original 1st round of chemos? Another question I´d like to know is how many chemos of each were you normally given.. for example..Doxil..and Gemzar, etc-. And most important.. were there any drug repeated in this years? Have you ever been in the hospital? I`m sorry to ask so many questions.. I´m just trying to figure out why my Mom hasn`t had so much luck.
Tks for sharing. Liz

Comments

  • green50
    green50 Member Posts: 312
    #2
    Hi Liz
    I had Taxol and Carbo Platnum the first time after my hysterectomy. That was every 3 weeks 6 treatments. Lasted about 4 months. Then I had a 17 month break. Count went up again and then I had taxitere and carbo 6 treatments. I became allergic to carbo so just did taxitere. then had a year break count went up. Then avastin and gemzar(sp?) then topatecan gemazar didnt work good. Had maybe 6 month break. then doxil, 4 months, then taxitere again and then the etopiside pills because they didnt want me to have any more taxitere 6 rounds of it is enough then I believe i had 3 month break. then went to taxitere again then they stopped me for a trial drug which found my tumors weren't big enough if you can believe that. They had to be 2 centimeters. When they got to be that the trial drug had problems so they tried topatecan again a little more agressively didnt work so found out that slow drip of carbo platnum worked desensitizing me so that was I wasnt allergic to it. It was a 7 hour drip. It worked great for 8 months dropping as much as 3000 at a time then last Dec I wanted a break and he took count and it was up so I took 2 months off and now on Etopiside drip. I go 3 days in a row then have 3 weeks off. I have a high (CA) count which is protein and that determines if you cancer is growing or your getting more cancer cells not necessarily tumors growing. MIne was 18040! After a round of chemo its 17917 which is only a drop of 123. But sometimes it takes a couple rounds before it drops good. Normal CA125 count is 0-35 but if I could get below 100 I would be satisfied. My tumors are size of end of finger except one is 2 fingers wide at spleen all in lymphnodes and I only get tired. As long as count is going down cancer is being destroyed. The only other thing about the CA125 count is that other things can cause it to go up like other things wrong with your body, appendix or your other organs thats why they have been trying to come up with ovarian count only but FDA hasnt approved yet and CA125 is the best we have now. Hope some of this helped. I know some of these other ladies have helped me. Only went in hospital once to retry carbo platnum stayed over night didnt have any more problems so just went once a month for the 7 hour drip. So no havent had to go in hospital. Hope this all makes sense had chemo and a little chemo brained today. LOl
    Prayers and Hugs
    Sandy
  • kris43
    kris43 Member Posts: 275
    #3
    green50 said:

    Hi Liz
    I had Taxol and Carbo Platnum the first time after my hysterectomy. That was every 3 weeks 6 treatments. Lasted about 4 months. Then I had a 17 month break. Count went up again and then I had taxitere and carbo 6 treatments. I became allergic to carbo so just did taxitere. then had a year break count went up. Then avastin and gemzar(sp?) then topatecan gemazar didnt work good. Had maybe 6 month break. then doxil, 4 months, then taxitere again and then the etopiside pills because they didnt want me to have any more taxitere 6 rounds of it is enough then I believe i had 3 month break. then went to taxitere again then they stopped me for a trial drug which found my tumors weren't big enough if you can believe that. They had to be 2 centimeters. When they got to be that the trial drug had problems so they tried topatecan again a little more agressively didnt work so found out that slow drip of carbo platnum worked desensitizing me so that was I wasnt allergic to it. It was a 7 hour drip. It worked great for 8 months dropping as much as 3000 at a time then last Dec I wanted a break and he took count and it was up so I took 2 months off and now on Etopiside drip. I go 3 days in a row then have 3 weeks off. I have a high (CA) count which is protein and that determines if you cancer is growing or your getting more cancer cells not necessarily tumors growing. MIne was 18040! After a round of chemo its 17917 which is only a drop of 123. But sometimes it takes a couple rounds before it drops good. Normal CA125 count is 0-35 but if I could get below 100 I would be satisfied. My tumors are size of end of finger except one is 2 fingers wide at spleen all in lymphnodes and I only get tired. As long as count is going down cancer is being destroyed. The only other thing about the CA125 count is that other things can cause it to go up like other things wrong with your body, appendix or your other organs thats why they have been trying to come up with ovarian count only but FDA hasnt approved yet and CA125 is the best we have now. Hope some of this helped. I know some of these other ladies have helped me. Only went in hospital once to retry carbo platnum stayed over night didnt have any more problems so just went once a month for the 7 hour drip. So no havent had to go in hospital. Hope this all makes sense had chemo and a little chemo brained today. LOl
    Prayers and Hugs
    Sandy

    WOW
    Sandy - you are another one of our chicks who stick. Wow - you've been through a lot. Do you EVER think it gets easier to hear the news that you are in a recurrence? I have not had to deal with it yet, but I "feel" the stress each and every time I read that one of our warriors is dealing with it yet again.

    Keep the faith. Hugs to you.

    Kris
  • green50
    green50 Member Posts: 312
    #4
    kris43 said:

    WOW
    Sandy - you are another one of our chicks who stick. Wow - you've been through a lot. Do you EVER think it gets easier to hear the news that you are in a recurrence? I have not had to deal with it yet, but I "feel" the stress each and every time I read that one of our warriors is dealing with it yet again.

    Keep the faith. Hugs to you.

    Kris

    Thanks Kris
    Easier? mm I don't know if you can say easier but knowing I wake up everyday and talk to my sons on the phone is a good thing and as chemo goes thru its cycles I know I will have some days I can do things. When they say count is going up I will say well what chemo now should we try? Try to pick the less of the bad stuff but sometimes you have to go with the strong chemo. The one I am on now isnt as bad as taxitere or taxol. Gives me a achy weakness but I have a good week usually before I go back again and count came down some after 1st round I will know about this second round next time. I guess you just make your duty to go through it knowing there will be a cure. My count goes down and my tumors are small. I try to think of it as someone with diabetes, they control it with insulin I control mine with chemo. I am blessed more then others, I can eat with no problem LOL and I have good nurses and a good dr. My family and friends don't entirely understand but they help me. And the greatest thing of all is the people on CSN who are encouraging. You get tired of being tired but those days I try to find things to do in sitting, computer or going thru pictures or sitting outside. I guess we all do what we can and try to be positive. I am so happy I found this site. I hope all is well with you and if I sound emotional this chemo does that.LOL
    Prayers and Hugs
    Sandy
  • Dreamdove
    Dreamdove Member Posts: 175 Member
    #5
    green50 said:

    Thanks Kris
    Easier? mm I don't know if you can say easier but knowing I wake up everyday and talk to my sons on the phone is a good thing and as chemo goes thru its cycles I know I will have some days I can do things. When they say count is going up I will say well what chemo now should we try? Try to pick the less of the bad stuff but sometimes you have to go with the strong chemo. The one I am on now isnt as bad as taxitere or taxol. Gives me a achy weakness but I have a good week usually before I go back again and count came down some after 1st round I will know about this second round next time. I guess you just make your duty to go through it knowing there will be a cure. My count goes down and my tumors are small. I try to think of it as someone with diabetes, they control it with insulin I control mine with chemo. I am blessed more then others, I can eat with no problem LOL and I have good nurses and a good dr. My family and friends don't entirely understand but they help me. And the greatest thing of all is the people on CSN who are encouraging. You get tired of being tired but those days I try to find things to do in sitting, computer or going thru pictures or sitting outside. I guess we all do what we can and try to be positive. I am so happy I found this site. I hope all is well with you and if I sound emotional this chemo does that.LOL
    Prayers and Hugs
    Sandy

    It's never easy
    Sandy, I am amazed at what you've been thru. How you keep yourself strong like that. You will be an inspiration to me if my cancer comes back. So far so good, 22 months NED. Other than the annoying abnormal paptests (which I am learning to deal with) I am fine. I worry sometimes but I can't help that. It comes with the territory.
  • green50
    green50 Member Posts: 312
    #6
    Dreamdove said:

    It's never easy
    Sandy, I am amazed at what you've been thru. How you keep yourself strong like that. You will be an inspiration to me if my cancer comes back. So far so good, 22 months NED. Other than the annoying abnormal paptests (which I am learning to deal with) I am fine. I worry sometimes but I can't help that. It comes with the territory.

    Thanks Dreamdove
    People like you keep me positive. And of course God keeps me strong. I pray you beat it. It sounds like you have. Don't worry about it coming back live like it won't. I fight for my sons as well as myself. I refuse tell let it take me. Somedays when I feel achy and weak its hard. But I look at those who still take chemo after 14 years. The cure or the med that will keep it in control with no side effects is on the way. BonnieR is another fighter and I am thankful for some of her advice as well as others. Some days I may sound down but then when the better days come around I am thankful. Thanks again for your message.
    Prayers and Hugs
    Sandy
  • newhopechurchli
    newhopechurchli Member Posts: 126
    #7
    green50 said:

    Thanks Dreamdove
    People like you keep me positive. And of course God keeps me strong. I pray you beat it. It sounds like you have. Don't worry about it coming back live like it won't. I fight for my sons as well as myself. I refuse tell let it take me. Somedays when I feel achy and weak its hard. But I look at those who still take chemo after 14 years. The cure or the med that will keep it in control with no side effects is on the way. BonnieR is another fighter and I am thankful for some of her advice as well as others. Some days I may sound down but then when the better days come around I am thankful. Thanks again for your message.
    Prayers and Hugs
    Sandy

    Sandy....
    Sandy, I read your about me and didn't see anything about the stage or grade of cancer that you were originally diagnosed with. Would you mind sharing that - because to see you are here 7 years later is wonderful. I know when I got diagnosed with stage 3 - grade 3..... I was so scared I was going to die..
    everything I saw on tv about cancer confirmed that fear to me. Every "doctor" show dealt with someone dying from cancer...It drove me nuts! But now I am in remission for 1 year - and reading about people like you has completely encouraged me that even if the worst happened - and the cancer came back.. I could still fight and be here for a long time. You have no idea how that has blessed my life and brought me peace. Thank You. Tricia
  • green50
    green50 Member Posts: 312
    #8
    newhopechurchli said:

    Sandy....
    Sandy, I read your about me and didn't see anything about the stage or grade of cancer that you were originally diagnosed with. Would you mind sharing that - because to see you are here 7 years later is wonderful. I know when I got diagnosed with stage 3 - grade 3..... I was so scared I was going to die..
    everything I saw on tv about cancer confirmed that fear to me. Every "doctor" show dealt with someone dying from cancer...It drove me nuts! But now I am in remission for 1 year - and reading about people like you has completely encouraged me that even if the worst happened - and the cancer came back.. I could still fight and be here for a long time. You have no idea how that has blessed my life and brought me peace. Thank You. Tricia

    Tricia
    I have stage 3 ovarian. I am very happy that I have given hope and I am praying you are cured. Its ladies like you that keep me going. I never had really big problems. I can eat and Its like flu achiness but does not last the whole time in between chemos. I am weak but when I have good days (weakness but not bad) look out I am going to the mall or dancing or out to eat with my friends. I hough and puff but refuse not to do anything. We will beat this. Just a matter of time. As long as I can keep going I will. No matter what it takes. Years ago I said if I ever got cancer I wouldnt take chemo. HMM ok I have had a lot of chemo. Of course years ago chemo was really bad much worse then the ones now and they have come along way. As I have stated before my Dads cousin In the 60s was given a year to live. Uh he is here 40 years later and has had no reoccurence of cancer. So ya never KNow. Stay positive Live and be happy. Thank you for your message really picks me up.
    Prayers and Hugs
    Sandy
  • ladyjogger31
    ladyjogger31 Member Posts: 289
    #9
    Sandy
    You are surely an inspiration to me as with the other warriors on this board. Women like you and Bonnie give us HOPE, COMFORT and ENCOURAGEMENT.
    Hugs, Prayers and Love, Terry
  • green50
    green50 Member Posts: 312
    #10
    ladyjogger31 said:

    Sandy
    You are surely an inspiration to me as with the other warriors on this board. Women like you and Bonnie give us HOPE, COMFORT and ENCOURAGEMENT.
    Hugs, Prayers and Love, Terry

    Thank you
    May we all dance on our 85th birthday. God Bless
    Prayers and Hugs
    Sandy

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