what my doctor said re: having one less chemo than recommended protocal

sisters:

saw my doctor this morning and asked if my ca 125 were sufficiently low, say below 35, could i, if i wanted, stop at 5 chemos rather than have the entire 6. if it were she, she said she'd have the 6, but she didn't think it was absolutely necessary. she agreed that if there were some migrant cells, or as she said, a pocket of cells, that having 6 would be better than 5, but she would leave it up to me. i was a little surprised, and expected her to take a hard line. she said that there's no evidence that having a ca 125 of 20 necessarily means a longer remission than if it were 35. in fact, she said the first 4 cycles of chemo are supposed to be the most effective.

i'm going to wait to see what my current ca 125 is ( which is after cycle 4), and what it is after my next, which will be the 5th cycle, before i make up my mind. i am glad to have a choice. as much as i'd like to be done at 5, there's a part of me that thinks i should stick with the plan, and not have any possible regrets later. what she also said was that 6 cycles of this chemo (carboplatnin and gemzar) was what most people could tolerate, not that it was ideal in and of itself. even those who tolerate chemo well (i don"t), usually can't do more than 7 or 8.

so, there you have it. my acupuncturist, who i completely trust and respect,) says the less chemo the better, and is all for me stopping at 5. having one more cycle of two infusions basically means feeling sick for at least another 3-4 more weeks, so it's a quality of life issue, too. that's all the news; we'll just wait for lab results. and go from there. will keep you posted.

sisterhood,
maggie
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Comments

  • Songflower
    Songflower Member Posts: 608
    Your Chemo Decision
    I think you should go by some research studies. I had the total of 6, 8 doxils, topotecan didn't work and am not on gemzar single (weekly) as I am pretty worn out and this way I can get more of the drug. I often wonder when our CA 125 is normal why we still relapse. My Gyn Onc said it is because the cells go dormant. It's a tough call. Let us know what you decide. Diane
  • lindaprocopio
    lindaprocopio Member Posts: 1,980

    Your Chemo Decision
    I think you should go by some research studies. I had the total of 6, 8 doxils, topotecan didn't work and am not on gemzar single (weekly) as I am pretty worn out and this way I can get more of the drug. I often wonder when our CA 125 is normal why we still relapse. My Gyn Onc said it is because the cells go dormant. It's a tough call. Let us know what you decide. Diane

    I've looked at chemo differently since I recurred.
    In the beginning when a 'cure' is still a possibility, "balls to the wall" is the way to go, aggressive and throw the kitchen sink at it because you may just be able to walk away from this adventure and never look back.

    But once you recur, QUALITY OF LIFE needs to get more weight in your decisions. For most of us, any remissions are apt to be short and chemo is apt to be a big part of our lives from now on. I, of course, hope that isn't true for any of you battling a recurrence. But you need to factor that into your decisions and discussions with your oncology team. Can you find a balance between quality of life and prolonged survival? In what way can you live a vibrant happy life even while in treatment? If the treatments are robbing you of joy, and it looks like 'treatment' could be a big part of the rest of your life, at what dosage and schedule can you recapture a more meaningful quality of life?

    Maybe pushing on with chemo will buy you a longer remission. & maybe not. I haven't enjoyed a remission for over a year, and yet I well remember how WONDERFUL (WONDERFUL!!!) it is and if I thought there was a prayer of my ever going into remission again, I can't imagine what I'd let them do to me. But I don't believe remission is in the cards for me anymore, nor do my doctors. So evey decision is based on balancing maintaining a high quality of life with doing what I need to do to stay alive. I've taken so much chemo that simply didn't work and that allowed disease progression even as I was in treatment. If I suffered like some of you do when I was getting chemo, I know that I wouldn't take one more chemo infusion than I needed to. This is coming from my own unique perspective and history, but I wanted to throw it out there as you work through your decision. (((((Maggie))))
  • maggie_wilson
    maggie_wilson Member Posts: 596

    I've looked at chemo differently since I recurred.
    In the beginning when a 'cure' is still a possibility, "balls to the wall" is the way to go, aggressive and throw the kitchen sink at it because you may just be able to walk away from this adventure and never look back.

    But once you recur, QUALITY OF LIFE needs to get more weight in your decisions. For most of us, any remissions are apt to be short and chemo is apt to be a big part of our lives from now on. I, of course, hope that isn't true for any of you battling a recurrence. But you need to factor that into your decisions and discussions with your oncology team. Can you find a balance between quality of life and prolonged survival? In what way can you live a vibrant happy life even while in treatment? If the treatments are robbing you of joy, and it looks like 'treatment' could be a big part of the rest of your life, at what dosage and schedule can you recapture a more meaningful quality of life?

    Maybe pushing on with chemo will buy you a longer remission. & maybe not. I haven't enjoyed a remission for over a year, and yet I well remember how WONDERFUL (WONDERFUL!!!) it is and if I thought there was a prayer of my ever going into remission again, I can't imagine what I'd let them do to me. But I don't believe remission is in the cards for me anymore, nor do my doctors. So evey decision is based on balancing maintaining a high quality of life with doing what I need to do to stay alive. I've taken so much chemo that simply didn't work and that allowed disease progression even as I was in treatment. If I suffered like some of you do when I was getting chemo, I know that I wouldn't take one more chemo infusion than I needed to. This is coming from my own unique perspective and history, but I wanted to throw it out there as you work through your decision. (((((Maggie))))

    diane and linda
    dear sisters,

    thank you for your thoughtful responses. yes, quality of life has taken on much more weight since recurrence. while we're still hoping for a remission with this very effective chemo combination, it won't always be so. my decision is dependent upon how low my ca 125 goes--if it's hovering around 35, probably will go on to sixth cycle; if it's in the teens, probably will stop at 5. i can only hope it keeps going lower, though i know it tends to level off some towards the end. i'm one of those who do not take well to chemo, while it kicks my butt, it does the job, so i'm not really complaining all that much. it's just hard to feel sick so much of the time, maybe especially because until this diagnosis, like you linda, i was never sick. (i can't recall your health status before diagnosis, diane; were you very healthy, too?)

    my doctor couldn't say whether having a 6th would buy me a longer remission, but if we didn't think it would, along with a lower ca 125, why would anyone do it? i think the questions you pose, linda, for us all to think about, are very meaningful re: balancing chemo with a decent quality of life. i've recently become friendly with a woman who has had ovarian cancer now for 6 years, gets weekly chemo, and lives a very active, committed life. she even flew to washington dc from san francisco to attend the ovarian conference held there recently; she's the sort that can understand the medical/scientific language. i'm not sure what she came away with practically, but i do admire her determination to be on the cutting edge. mostly i'm interested in the clinical application. how will it help us?

    thank you again for your food for thought. hope you're both feeling well, though i know you're feeling pretty weak right now, diane. may you gain in strength with each day.

    love and sisterhood,
    maggie
  • Songflower
    Songflower Member Posts: 608
    Chemo
    I am doing well on gemzar weekly. I hope it works because I feel like I could tolerate it long term. The topotecan really wore me out and didn't work. LIke Linda, I would have stopped it had I known it wasn't workinging. It's hard to tell. I get flu symptoms for about two days with gemzar and a headache. The rest of the time life is pretty normal. Jim went to a work picnic today and it was wonderful to tell him to go because I am tolerate this gemzar. I too think I will be on chemo the rest of my life and am happy to find a chemo compatible with me although I don't know whether it works. I don't regret hipec as it gave me more time.

    I too have a hard time with chemo. I was always healthy except for breast cancer treated with chemo and did great with that. I exercised regularly and ate healthy. I wish a normal CA125 protected but I know only too well it does not. Something is going on when it is normal and we relapse. My GynOnc says the cells go dormant. I don't know how you find them then. Right now whenever I am off chemo I relapse. I know I won't take taxol again.

    After my breast cancer chemo I suspected the second adriamycin killed the cancer. It felt like a syringe was in the tumor sucking it out. (I had chemo upfront). It became very hard after that. Honestly, I think I only needed 3.

    I doubt #6 will help you that much. But if you will be upset with yourself for not taking it and relapsing then take it. I don't think your oncologist would tell you that you don't need it if you don't. This is all they study and learn. We try and study and learn on the internet which really is limited information. If you relapse and take 5 don't blame yourself. My personal idea is that after our first chemo (carbol/taxol) we need something low dose for a year to catch the dormant cells.

    I don't know if I helped but you have to be content with your decision. Either way, I think you will do the right thing. Sometimes we don't know; like me taking topotecan.
    Also I could have taken a cisplatin drug with gemzar but he decided on one drug therapy as you can give higher doses and it easier on you because it is only weekly. I guess I will be on a platinum drug alone next. I don't think about it though.

    These decisions are so hard to make. What are your thoughts now?

    Diane
  • maggie_wilson
    maggie_wilson Member Posts: 596

    Chemo
    I am doing well on gemzar weekly. I hope it works because I feel like I could tolerate it long term. The topotecan really wore me out and didn't work. LIke Linda, I would have stopped it had I known it wasn't workinging. It's hard to tell. I get flu symptoms for about two days with gemzar and a headache. The rest of the time life is pretty normal. Jim went to a work picnic today and it was wonderful to tell him to go because I am tolerate this gemzar. I too think I will be on chemo the rest of my life and am happy to find a chemo compatible with me although I don't know whether it works. I don't regret hipec as it gave me more time.

    I too have a hard time with chemo. I was always healthy except for breast cancer treated with chemo and did great with that. I exercised regularly and ate healthy. I wish a normal CA125 protected but I know only too well it does not. Something is going on when it is normal and we relapse. My GynOnc says the cells go dormant. I don't know how you find them then. Right now whenever I am off chemo I relapse. I know I won't take taxol again.

    After my breast cancer chemo I suspected the second adriamycin killed the cancer. It felt like a syringe was in the tumor sucking it out. (I had chemo upfront). It became very hard after that. Honestly, I think I only needed 3.

    I doubt #6 will help you that much. But if you will be upset with yourself for not taking it and relapsing then take it. I don't think your oncologist would tell you that you don't need it if you don't. This is all they study and learn. We try and study and learn on the internet which really is limited information. If you relapse and take 5 don't blame yourself. My personal idea is that after our first chemo (carbol/taxol) we need something low dose for a year to catch the dormant cells.

    I don't know if I helped but you have to be content with your decision. Either way, I think you will do the right thing. Sometimes we don't know; like me taking topotecan.
    Also I could have taken a cisplatin drug with gemzar but he decided on one drug therapy as you can give higher doses and it easier on you because it is only weekly. I guess I will be on a platinum drug alone next. I don't think about it though.

    These decisions are so hard to make. What are your thoughts now?

    Diane

    diane
    i appreciate your comments and experience very much, and am sorry not to have remembered that you also had breast cancer. isn't hipec what connie (paris) on this site had in december 2010? i wonder how she's doing...i'm not sure i'm clear what you mean when you say that hipec gave you time???

    i just learned that my ca 125 after 4 cycles is now at 32, below the supposedly "normal" 35. i'm pretty sure it will go down a little more after my 5th chemo, then i think i'm going to stop there, and not do the 6th. with upsc later stages, there are almost always reccurences so i'm not going to blame myself for that, i expect that. the only question is how long a remission will i have?

    i've been thinking about dormant cells, migrating cells, pocket cells, all terms for the same thing, and frankly i believe they are always there with upsc, even when we're ned. sooner or later they crop back up. i want my immune system to be in the best condition it can be, which means the fewer the chemos the better. as i've said in other posts, i'm going to explore the possibility of high dose iv vitamin c; i've heard great things about it, and there have been women on the ovarian site who've had it with good results. i'm going to go to that site and check in re: this again. there are just not many alternative treatments for upsc, as opposed to ovarian, for example, like evertheoptomist is doing right now. a trial for a vaccine consisting of 5 overexpressed antigens for her cancer. i think because there has been some confusion about what cancer she in fact has, ovarian or upsc, she's being treated for ovarian. (i hope i've gotten this right)

    when i had the tumor assay to determine the best chemo for me this time around, it came out that cisplatin and gemzar was the most synergistic, and it was the first one recommended. my doctor thought the cisplatin would be too harsh for me to tolerate, and i know she was right, so she has me on a "cousin" of cisplatin--carboplatin, which seems to be working. she also reduced the strength of the carbo by 16%, and the gemzar by 20%., which i'm really glad she did, because it's hard enough as it is.

    so, diane, my thinking now is no 6th chemo, and i'm feeling pretty good about that that's the right decision. so glad you're feeling better.

    sisterhood,
    maggie
  • Songflower
    Songflower Member Posts: 608

    diane
    i appreciate your comments and experience very much, and am sorry not to have remembered that you also had breast cancer. isn't hipec what connie (paris) on this site had in december 2010? i wonder how she's doing...i'm not sure i'm clear what you mean when you say that hipec gave you time???

    i just learned that my ca 125 after 4 cycles is now at 32, below the supposedly "normal" 35. i'm pretty sure it will go down a little more after my 5th chemo, then i think i'm going to stop there, and not do the 6th. with upsc later stages, there are almost always reccurences so i'm not going to blame myself for that, i expect that. the only question is how long a remission will i have?

    i've been thinking about dormant cells, migrating cells, pocket cells, all terms for the same thing, and frankly i believe they are always there with upsc, even when we're ned. sooner or later they crop back up. i want my immune system to be in the best condition it can be, which means the fewer the chemos the better. as i've said in other posts, i'm going to explore the possibility of high dose iv vitamin c; i've heard great things about it, and there have been women on the ovarian site who've had it with good results. i'm going to go to that site and check in re: this again. there are just not many alternative treatments for upsc, as opposed to ovarian, for example, like evertheoptomist is doing right now. a trial for a vaccine consisting of 5 overexpressed antigens for her cancer. i think because there has been some confusion about what cancer she in fact has, ovarian or upsc, she's being treated for ovarian. (i hope i've gotten this right)

    when i had the tumor assay to determine the best chemo for me this time around, it came out that cisplatin and gemzar was the most synergistic, and it was the first one recommended. my doctor thought the cisplatin would be too harsh for me to tolerate, and i know she was right, so she has me on a "cousin" of cisplatin--carboplatin, which seems to be working. she also reduced the strength of the carbo by 16%, and the gemzar by 20%., which i'm really glad she did, because it's hard enough as it is.

    so, diane, my thinking now is no 6th chemo, and i'm feeling pretty good about that that's the right decision. so glad you're feeling better.

    sisterhood,
    maggie

    Your Decision
    I think you are right in your decision. I was too worn down to take carboplatinum with gemzar this go around. We have to all make these hard decisions. I have to realize how run down I am and how much better I am feeling now. I think #5 will be good too. They don't really know how much to give us. Clinical research studies guide them. I am with you in this. You have done your homework. I've made some decisions that were not the best along this rocky road like the topetocan. But I am doing well on this gemzar. "Live, Learn, and Pass it On." Can't wait for you to start feeling better!

    You're a Warrior!
    Diane
  • maggie_wilson
    maggie_wilson Member Posts: 596

    Your Decision
    I think you are right in your decision. I was too worn down to take carboplatinum with gemzar this go around. We have to all make these hard decisions. I have to realize how run down I am and how much better I am feeling now. I think #5 will be good too. They don't really know how much to give us. Clinical research studies guide them. I am with you in this. You have done your homework. I've made some decisions that were not the best along this rocky road like the topetocan. But I am doing well on this gemzar. "Live, Learn, and Pass it On." Can't wait for you to start feeling better!

    You're a Warrior!
    Diane

    diane
    thanx for your kind words. my doctor said that, as you say, they don't know how much to give us. she says the prevailing belief amongst oncologists is the more chemo the better!!!! geeze. she also said that it's not so much what is best for us in terms of number of chemos, but how much we can tolerate, and that most of us can't tolerate more than 6! so, if she's right, it's kinda random what we end up with.

    i don't think we can possibly know at any given time, what's best for us--the doctors don't know, and neither do we. we look to each other for help with decision making as much, or more, than to doctors. and, of course, hindsight is 100%. how could you possibly know that topetocan wouldn't be right for you ahead of time???

    sounds like you're doing a good job of taking care of yourself, diane . good role model!

    sisterhood,
    maggie
  • maggie_wilson
    maggie_wilson Member Posts: 596

    diane
    thanx for your kind words. my doctor said that, as you say, they don't know how much to give us. she says the prevailing belief amongst oncologists is the more chemo the better!!!! geeze. she also said that it's not so much what is best for us in terms of number of chemos, but how much we can tolerate, and that most of us can't tolerate more than 6! so, if she's right, it's kinda random what we end up with.

    i don't think we can possibly know at any given time, what's best for us--the doctors don't know, and neither do we. we look to each other for help with decision making as much, or more, than to doctors. and, of course, hindsight is 100%. how could you possibly know that topetocan wouldn't be right for you ahead of time???

    sounds like you're doing a good job of taking care of yourself, diane . good role model!

    sisterhood,
    maggie

    diane, p.s.
    i meant to also add that my doctor said that the most current thinking in the field is NOT to give chemo the minute ca 125 rises. in the past, and still now, many doctors give chemo as soon as there is any rise in ca 125. i'm certainly glad many doctors are rethinking this. thought this was interesting.

    sisterhood,
    maggie
  • Songflower
    Songflower Member Posts: 608

    diane, p.s.
    i meant to also add that my doctor said that the most current thinking in the field is NOT to give chemo the minute ca 125 rises. in the past, and still now, many doctors give chemo as soon as there is any rise in ca 125. i'm certainly glad many doctors are rethinking this. thought this was interesting.

    sisterhood,
    maggie

    Chemo
    I've heard that too. They can knock it back as long as it doesn't go to high and then our bodies don't get too much chemo. I think we panic when it starts going up and almost pressure the Doc's to start chemo. It's natural to feel panicked when this happens. But I've also heard it doesn't extend your life just your time on chemo. With time we'll figure it out. I believe you made a good decision. Diane
  • daisy366
    daisy366 Member Posts: 1,458

    Chemo
    I've heard that too. They can knock it back as long as it doesn't go to high and then our bodies don't get too much chemo. I think we panic when it starts going up and almost pressure the Doc's to start chemo. It's natural to feel panicked when this happens. But I've also heard it doesn't extend your life just your time on chemo. With time we'll figure it out. I believe you made a good decision. Diane

    Good discussion
    This would be a tough call for me. I think you have been thoughtful about it.

    I do remember someone - I think it was Shortmarge - who did not have the standard 6 taxol/carbo initial chemos because she had trouble. She stopped at 5 And I believe she is still NED.

    Re: the "balls to the wall" philosophy. I really wonder if that doesn't come back to bite us. How much of our immune system is compromised with more treatments? What kind of long term side effects are we unwittingly setting ourselves up for? In Diane's case and others treated with chemo for prior cancer, I think it was mentioned that there might be a link to UPSC. Only time will tell since there is still so much research that needs to be done adn this is such a crap shoot. I'm comfortable with my doctor's conservative approach - only treating what he sees a need to treat rather than throwing the kitchen sink in there. And, as Maggie is dealing with, the ultimate decision is ours.

    Continuing Blessings always, ladies. Mary Ann
  • maggie_wilson
    maggie_wilson Member Posts: 596
    daisy366 said:

    Good discussion
    This would be a tough call for me. I think you have been thoughtful about it.

    I do remember someone - I think it was Shortmarge - who did not have the standard 6 taxol/carbo initial chemos because she had trouble. She stopped at 5 And I believe she is still NED.

    Re: the "balls to the wall" philosophy. I really wonder if that doesn't come back to bite us. How much of our immune system is compromised with more treatments? What kind of long term side effects are we unwittingly setting ourselves up for? In Diane's case and others treated with chemo for prior cancer, I think it was mentioned that there might be a link to UPSC. Only time will tell since there is still so much research that needs to be done adn this is such a crap shoot. I'm comfortable with my doctor's conservative approach - only treating what he sees a need to treat rather than throwing the kitchen sink in there. And, as Maggie is dealing with, the ultimate decision is ours.

    Continuing Blessings always, ladies. Mary Ann

    mary ann
    i agree, too, with my doctor's more conservative, thoughtful approach. i don't think i'd stop at 5 if she didn't think it was fine to do. as i said earlier, she has said that really it's the first 4 chemos that are most effective. i think she was speaking generally, and not specifically to mine. i'm sure my ca 125 will go down a little more with the 5th chemo, and i don't see much value in a 6th. i want my immune system to be as strong as possible, and i'm glad my doctor has not thrown everything and the kitchen sink at me, as my surgeon would have done. he was saying i should have chemo a good six months before my chemo doctor thought i needed to. nothing had changed since i had seen him last 3 months earlier.

    now the issue is platelets--never had this problem before, but now they're low. i had labs done tuesday, and if they're still as low as they were, i might have to have a transfusion. it's always something. i so want to be able to have my last chemo cycle the next two mondays. my acupuncturist said having chemo on 8/8 is very auspicious according to the chinese--something like double infinity. sounds good to me. waiting to hear re: results, if we don't hear by late afternoon, we'll call, but right now, no news is good news.

    how long has it been now, since you're last treatment? sounds like you're doing well, which is great. as soon as this chemo is over, i'm going to pursue high dose iv vitamin c, which i've mentioned in earlier posts. i've posted on our ovarian sisters' site asking about vit c, and 3 women said the same thing: they all feel it's helped them immensely. two had iv vit c during chemo, and they attribute much of how well they felt during chemo, to vit c. and they're still taking it as a preventative. so can't hurt to check it out, since so few options for us.

    take care, mary ann. trust everything is good.

    sisterhood,
    maggie
  • daisy366
    daisy366 Member Posts: 1,458

    mary ann
    i agree, too, with my doctor's more conservative, thoughtful approach. i don't think i'd stop at 5 if she didn't think it was fine to do. as i said earlier, she has said that really it's the first 4 chemos that are most effective. i think she was speaking generally, and not specifically to mine. i'm sure my ca 125 will go down a little more with the 5th chemo, and i don't see much value in a 6th. i want my immune system to be as strong as possible, and i'm glad my doctor has not thrown everything and the kitchen sink at me, as my surgeon would have done. he was saying i should have chemo a good six months before my chemo doctor thought i needed to. nothing had changed since i had seen him last 3 months earlier.

    now the issue is platelets--never had this problem before, but now they're low. i had labs done tuesday, and if they're still as low as they were, i might have to have a transfusion. it's always something. i so want to be able to have my last chemo cycle the next two mondays. my acupuncturist said having chemo on 8/8 is very auspicious according to the chinese--something like double infinity. sounds good to me. waiting to hear re: results, if we don't hear by late afternoon, we'll call, but right now, no news is good news.

    how long has it been now, since you're last treatment? sounds like you're doing well, which is great. as soon as this chemo is over, i'm going to pursue high dose iv vitamin c, which i've mentioned in earlier posts. i've posted on our ovarian sisters' site asking about vit c, and 3 women said the same thing: they all feel it's helped them immensely. two had iv vit c during chemo, and they attribute much of how well they felt during chemo, to vit c. and they're still taking it as a preventative. so can't hurt to check it out, since so few options for us.

    take care, mary ann. trust everything is good.

    sisterhood,
    maggie

    Maggie
    I am doing well, thanks. I finished tx in Nov and have had great exams since then. I think leaving my FT job was the frosting on the cake for my stressless lifestyle.

    I will check out the Vit C. It is antioxidant so really makes sense. Aren't pills adequate?

    Now back to your blood counts. Don't think I'm crazy...but when my blood counts tanked during my initial tx, I dodged the neupogen shot (at least I attribute it to this) by using my visualization techniques!!! Good ole Dr. Simonton to the rescue!! I visualized my bone marrow "factory" turning out lots of blood cells. My cat who is the world's best and 2nd loudest purr-kitty loves to perch on my stomach. Her purring was the "motor" that ran the factory. Viola...Within a week my counts were great!! Give it a try - sure can't hurt anything.

    Maggie, all my best to you, friend. Mary Ann
  • lindaprocopio
    lindaprocopio Member Posts: 1,980

    mary ann
    i agree, too, with my doctor's more conservative, thoughtful approach. i don't think i'd stop at 5 if she didn't think it was fine to do. as i said earlier, she has said that really it's the first 4 chemos that are most effective. i think she was speaking generally, and not specifically to mine. i'm sure my ca 125 will go down a little more with the 5th chemo, and i don't see much value in a 6th. i want my immune system to be as strong as possible, and i'm glad my doctor has not thrown everything and the kitchen sink at me, as my surgeon would have done. he was saying i should have chemo a good six months before my chemo doctor thought i needed to. nothing had changed since i had seen him last 3 months earlier.

    now the issue is platelets--never had this problem before, but now they're low. i had labs done tuesday, and if they're still as low as they were, i might have to have a transfusion. it's always something. i so want to be able to have my last chemo cycle the next two mondays. my acupuncturist said having chemo on 8/8 is very auspicious according to the chinese--something like double infinity. sounds good to me. waiting to hear re: results, if we don't hear by late afternoon, we'll call, but right now, no news is good news.

    how long has it been now, since you're last treatment? sounds like you're doing well, which is great. as soon as this chemo is over, i'm going to pursue high dose iv vitamin c, which i've mentioned in earlier posts. i've posted on our ovarian sisters' site asking about vit c, and 3 women said the same thing: they all feel it's helped them immensely. two had iv vit c during chemo, and they attribute much of how well they felt during chemo, to vit c. and they're still taking it as a preventative. so can't hurt to check it out, since so few options for us.

    take care, mary ann. trust everything is good.

    sisterhood,
    maggie

    Maggie: on those low platelets, be careful.
    You probably know this, but low platelets puts you at risk for internal bleeding so don't do any heavy lifting or anything strenuous until you get them back up there. Don't strain on the toilet; pinch back any huge sneezes; don't scratch your skin hard even if you itch; floss only with extreme care; stuff like that. I had to have a platelet transfusion once (looks like a bag of snot); & that did the trick & brought me back up to safety.

    I have been having some issues lately that I will share with my buddies posting on this thread. I'd been so lucky to have no real side affects from my cancer or my treatments, but last month I noticed that my voice was soft and when I tried to speak up it would get all squeaky (& that is how it's been about half of the time). I also minded the heat wave so much worse than I ever have, feeling so winded from any exertion. It really was noticeable at the beach when I tried to walk 2 miles to various shops in the heat and found myself really sucking for air & scaring my family. & when I tried to jump the waves with my granddaughter, in no time I couldn't get my breath & was knocked into the surf. Combined with all that, right between the 'v' of the center of my ribcage, it hurt when I pressed there, and I was burping and uncomfortable. My oncologist suggested I see my primary care physician, so I did that today. He said my liver is slightly enlarged and pressing on my lungs and my stomach, causing those symptoms. To rule out blood clots, he had a Lower Extremity Doppler and a CT-A (a special CT scan that looks at arteries, etc. with a fast-push contrast) & both were clear. But he is still calling my oncologist to recommend that I go on Lovenox (a fancy type of heparin you give yourself as shots in your tummy) since he feels I am high risk for blood clots with all the chemos I've had & the tamoxifen/megace I am currently taking. Meanwhile, he wants me to take a Prilosec and a baby aspirin daily. Until my oncologist chimes in, that's all I know. I can live with this minor discomfort as long as I know what's causing it. But I'm off my game for sure this week.
  • daisy366
    daisy366 Member Posts: 1,458

    Maggie: on those low platelets, be careful.
    You probably know this, but low platelets puts you at risk for internal bleeding so don't do any heavy lifting or anything strenuous until you get them back up there. Don't strain on the toilet; pinch back any huge sneezes; don't scratch your skin hard even if you itch; floss only with extreme care; stuff like that. I had to have a platelet transfusion once (looks like a bag of snot); & that did the trick & brought me back up to safety.

    I have been having some issues lately that I will share with my buddies posting on this thread. I'd been so lucky to have no real side affects from my cancer or my treatments, but last month I noticed that my voice was soft and when I tried to speak up it would get all squeaky (& that is how it's been about half of the time). I also minded the heat wave so much worse than I ever have, feeling so winded from any exertion. It really was noticeable at the beach when I tried to walk 2 miles to various shops in the heat and found myself really sucking for air & scaring my family. & when I tried to jump the waves with my granddaughter, in no time I couldn't get my breath & was knocked into the surf. Combined with all that, right between the 'v' of the center of my ribcage, it hurt when I pressed there, and I was burping and uncomfortable. My oncologist suggested I see my primary care physician, so I did that today. He said my liver is slightly enlarged and pressing on my lungs and my stomach, causing those symptoms. To rule out blood clots, he had a Lower Extremity Doppler and a CT-A (a special CT scan that looks at arteries, etc. with a fast-push contrast) & both were clear. But he is still calling my oncologist to recommend that I go on Lovenox (a fancy type of heparin you give yourself as shots in your tummy) since he feels I am high risk for blood clots with all the chemos I've had & the tamoxifen/megace I am currently taking. Meanwhile, he wants me to take a Prilosec and a baby aspirin daily. Until my oncologist chimes in, that's all I know. I can live with this minor discomfort as long as I know what's causing it. But I'm off my game for sure this week.

    Linda,
    I'm soooooo sorry to hear of your fatigue and discomfort <<<<LINDA>>>>. I have always been amazed at your stamina, attitude, and refusal to be anything other than WELL. When do you find out more about your liver and get the other half treated?

    If you believe in the power of prayer, just know that you have Many many people praying for you.

    HUGS and LOVE. Mary Ann
  • maggie_wilson
    maggie_wilson Member Posts: 596

    Maggie: on those low platelets, be careful.
    You probably know this, but low platelets puts you at risk for internal bleeding so don't do any heavy lifting or anything strenuous until you get them back up there. Don't strain on the toilet; pinch back any huge sneezes; don't scratch your skin hard even if you itch; floss only with extreme care; stuff like that. I had to have a platelet transfusion once (looks like a bag of snot); & that did the trick & brought me back up to safety.

    I have been having some issues lately that I will share with my buddies posting on this thread. I'd been so lucky to have no real side affects from my cancer or my treatments, but last month I noticed that my voice was soft and when I tried to speak up it would get all squeaky (& that is how it's been about half of the time). I also minded the heat wave so much worse than I ever have, feeling so winded from any exertion. It really was noticeable at the beach when I tried to walk 2 miles to various shops in the heat and found myself really sucking for air & scaring my family. & when I tried to jump the waves with my granddaughter, in no time I couldn't get my breath & was knocked into the surf. Combined with all that, right between the 'v' of the center of my ribcage, it hurt when I pressed there, and I was burping and uncomfortable. My oncologist suggested I see my primary care physician, so I did that today. He said my liver is slightly enlarged and pressing on my lungs and my stomach, causing those symptoms. To rule out blood clots, he had a Lower Extremity Doppler and a CT-A (a special CT scan that looks at arteries, etc. with a fast-push contrast) & both were clear. But he is still calling my oncologist to recommend that I go on Lovenox (a fancy type of heparin you give yourself as shots in your tummy) since he feels I am high risk for blood clots with all the chemos I've had & the tamoxifen/megace I am currently taking. Meanwhile, he wants me to take a Prilosec and a baby aspirin daily. Until my oncologist chimes in, that's all I know. I can live with this minor discomfort as long as I know what's causing it. But I'm off my game for sure this week.

    mary ann and linda
    mary ann,

    thanx for the visualization tip; i'll try it. i believe in visualization, but somehow never find the time/inclination to do it. i'm so glad you're doing so well. may it always be thus!

    oh linda,

    those symptoms don't sound like much fun, now more shots, meds, etc. still, if the symptoms can be controlled by a few extra things to do, so be it. good that blood clots have been ruled out. do you have any idea how you're doing on the tamoxifen/megace? please let us know what your oncologist has to say about what's been recommended to you.

    thank you for low count/platelets advice. i am trying to be careful; had another lab test on tuesday and waiting for results--so far, no news is good news, and have been checked out for possible internal bleeding, but thankfully that's not happening. i so don't want a transfusion, however. i just want to get going on my last bloody chemo for now, and have a break.

    i often think of you, linda, and am hoping all these annoying symptoms resolve, or at least are controlled.

    love and sisterhood,
    maggie
  • Fayard
    Fayard Member Posts: 438

    mary ann
    i agree, too, with my doctor's more conservative, thoughtful approach. i don't think i'd stop at 5 if she didn't think it was fine to do. as i said earlier, she has said that really it's the first 4 chemos that are most effective. i think she was speaking generally, and not specifically to mine. i'm sure my ca 125 will go down a little more with the 5th chemo, and i don't see much value in a 6th. i want my immune system to be as strong as possible, and i'm glad my doctor has not thrown everything and the kitchen sink at me, as my surgeon would have done. he was saying i should have chemo a good six months before my chemo doctor thought i needed to. nothing had changed since i had seen him last 3 months earlier.

    now the issue is platelets--never had this problem before, but now they're low. i had labs done tuesday, and if they're still as low as they were, i might have to have a transfusion. it's always something. i so want to be able to have my last chemo cycle the next two mondays. my acupuncturist said having chemo on 8/8 is very auspicious according to the chinese--something like double infinity. sounds good to me. waiting to hear re: results, if we don't hear by late afternoon, we'll call, but right now, no news is good news.

    how long has it been now, since you're last treatment? sounds like you're doing well, which is great. as soon as this chemo is over, i'm going to pursue high dose iv vitamin c, which i've mentioned in earlier posts. i've posted on our ovarian sisters' site asking about vit c, and 3 women said the same thing: they all feel it's helped them immensely. two had iv vit c during chemo, and they attribute much of how well they felt during chemo, to vit c. and they're still taking it as a preventative. so can't hurt to check it out, since so few options for us.

    take care, mary ann. trust everything is good.

    sisterhood,
    maggie

    Vitami n C
    Maggie,
    I took vitamin C in power all throughout my 6 cycles of chemo.
    I think it helped me to do better than I expected.
    My WBC were never too low to stop chemo, RBC was a little low given I was in treatment, and platelets were fine.

    My doctor, onco/gyno, told me it was Ok to take vitamin C. I did some research and there was not enough evidence of hurting patients; however, there was evidence of benefiting.

    Ask your doctor what his/her thoughts are about it.
    I hope your your CA125 continues dropping.
  • daisy366
    daisy366 Member Posts: 1,458
    Fayard said:

    Vitami n C
    Maggie,
    I took vitamin C in power all throughout my 6 cycles of chemo.
    I think it helped me to do better than I expected.
    My WBC were never too low to stop chemo, RBC was a little low given I was in treatment, and platelets were fine.

    My doctor, onco/gyno, told me it was Ok to take vitamin C. I did some research and there was not enough evidence of hurting patients; however, there was evidence of benefiting.

    Ask your doctor what his/her thoughts are about it.
    I hope your your CA125 continues dropping.

    no high doses of Vit C during chemo
    That's what my gyn onc said b/c Vit C is antioxidant and could screw up chemo. I think waiting till done is best.
  • Songflower
    Songflower Member Posts: 608
    daisy366 said:

    no high doses of Vit C during chemo
    That's what my gyn onc said b/c Vit C is antioxidant and could screw up chemo. I think waiting till done is best.

    Linda's Lovenox
    I'm praying for you too Linda. I think we all have to be extra careful in the heat. Sometimes I walk and can't believe how tired I get. But then this happens to everyone in the heat. I know you are such a warrior but we all need to take it easy in this weather. One more month and we can walk again.

    Love Ya, Diane
  • daisy366
    daisy366 Member Posts: 1,458

    Linda's Lovenox
    I'm praying for you too Linda. I think we all have to be extra careful in the heat. Sometimes I walk and can't believe how tired I get. But then this happens to everyone in the heat. I know you are such a warrior but we all need to take it easy in this weather. One more month and we can walk again.

    Love Ya, Diane

    another thought re: fatigue
    I've been thinking of LInda's fatigue and then I realized that I continue to be fatigued almost 10 months post treatment completion!! I exercise religiously, eat well, but still am fatigued. I have to remember I'm no spring chicken and my body has been through alot, so I live with it and rest alot too.

    Linda, I think the fatigue is to be expected. Your treatment has been ongoing for so long, that your body is probably wanting to rest more.

    Just a thought. Love, Mary Ann
  • maggie_wilson
    maggie_wilson Member Posts: 596
    daisy366 said:

    another thought re: fatigue
    I've been thinking of LInda's fatigue and then I realized that I continue to be fatigued almost 10 months post treatment completion!! I exercise religiously, eat well, but still am fatigued. I have to remember I'm no spring chicken and my body has been through alot, so I live with it and rest alot too.

    Linda, I think the fatigue is to be expected. Your treatment has been ongoing for so long, that your body is probably wanting to rest more.

    Just a thought. Love, Mary Ann

    fayard and mary ann re: vitamins
    sisters,

    the charge nurse said no vitamins except some b; my doctor said i could take any vitamins, that there just wasn't evidence that vitamins interfered with chemo. actually, i've learned that vitamin c is not an antioxidant but a" pro-oxidant because it generates hydrogen peroxide in the extracellular space. h202 is the drug that preferentially kills caner cells while leaving normal cells unharmed." this is according to a kansas city medical center article. i was given a link to their web page, but now that i look for it, it says that page is no longer there! in any case, i do have some powdered vitamin c which i'll take before and during last chemo.

    as for fatigue, i agree that fatigue is the last to go, and maybe doesn't go entirely anymore. it's hard for those of us who are used to being active, and never giving having enough energy a second thought. i do expect to have less fatigue after chemo is finished, but i know it won't be back to normal for a long time, if ever.

    thanx for your kind words, fayard. at first my ca 125 went down phenomenally, after the 4th cycle it went down to 32, 21 lower than after 3rd. i expect after 5th chemo it will go down even less, maybe 10; though i'd like it to go down another 21 or so. still, if it goes down, i'll take what i can get. fortunately, it does not look like i'll need a platelet transfusion, since my platelets went up somewhat in 24 hours, and the trend is up, so doctor isn't concerned. chemo is monday, so i have a few more days for my platelets to go up a little more, hopefully enough to have the chemo.

    fyi: i want to also say that i read a front page article in the san francisco chronicle yesterday reporting that researchers at stanford have found some drugs--5 i think-- that target glucose, which feeds cancer, and leaves healthy cells alone. they have not tried these drugs on humans yet, so it will be awhile before they become available, still, it's a good sign, and researchers are excited about them......(s.f. chronicle, 4 august) the article was about starving cancer.

    sisterhood,
    maggie