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

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  • upsofloating
    upsofloating Member Posts: 466 Member

    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

    Oral vs IV Vitamin C
    Maggie, I routinely follow ovarian board as my orig differential diagnosis was equivocal, UPSC Stage IVB vs. Ovarian Stage IIIC. The ladies who pursue the IV Vit C have had numerous discussions and referenced various studies on this with apparent outcome that IV Vit C results in the hydrogen peroxide in the cellular spaces to attack cancer cells but the oral vitamin C does not achieve this same effect. One study that utilized oral admin discounted effect and the one that used the IV route had positive results. Something worth checking oput anyway.

    Glad to see your platelets are bouncing back for you to get that last chemo done.
    Annie
  • maggie_wilson
    maggie_wilson Member Posts: 596

    Oral vs IV Vitamin C
    Maggie, I routinely follow ovarian board as my orig differential diagnosis was equivocal, UPSC Stage IVB vs. Ovarian Stage IIIC. The ladies who pursue the IV Vit C have had numerous discussions and referenced various studies on this with apparent outcome that IV Vit C results in the hydrogen peroxide in the cellular spaces to attack cancer cells but the oral vitamin C does not achieve this same effect. One study that utilized oral admin discounted effect and the one that used the IV route had positive results. Something worth checking oput anyway.

    Glad to see your platelets are bouncing back for you to get that last chemo done.
    Annie

    thanx, annie
    yes, i've been looking at ovarian board, and have seen references, plus i wanted to know if anyone there had tried iv vitc, and i heard the same thing that you have. it's definitely something i'll check out. the oral vit c, however, may help now with the effects of chemo.

    thanx for your kind words re: platelets--hope their still bouncing back!

    hope also you're doing ok.

    sisterhood,
    maggie
  • evertheoptimist
    evertheoptimist Member Posts: 140

    Oral vs IV Vitamin C
    Maggie, I routinely follow ovarian board as my orig differential diagnosis was equivocal, UPSC Stage IVB vs. Ovarian Stage IIIC. The ladies who pursue the IV Vit C have had numerous discussions and referenced various studies on this with apparent outcome that IV Vit C results in the hydrogen peroxide in the cellular spaces to attack cancer cells but the oral vitamin C does not achieve this same effect. One study that utilized oral admin discounted effect and the one that used the IV route had positive results. Something worth checking oput anyway.

    Glad to see your platelets are bouncing back for you to get that last chemo done.
    Annie

    annie,
    I also have an

    annie,

    I also have an ambiguous DX (Ovarian 3c or UPSC 4B - exactly like you).

    I actually get most of my research information from the ovarian board of inspire.com There are about a dozen dedicated researchers who ferret out all sorts of studies and post them. Amazing group of women!

    Given how similar UPSC and OVCA are both in terms of their behavior and treatment options,that's the best source of my information. You might want to check it out.

    Actually, I think they should break out UPSC from the uterine cancer grouping. It does not help patients. While they should really get the same kind of treatment and drugs, because of the nomenclature, insurance companies are refusing to cover certain procedures and options for UPSC patients that they cover for the OVCA patients. It's very unfortunate.
  • RoseyR
    RoseyR Member Posts: 471 Member

    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

    Vitamin C Studies


    Maggie and All,

    Assume you know that Jeanne Driscoll (reearcher, U of Kansas) got a major grant to research the effects of intravenous Vitamin C on treatment of gynecological cancers. Results should be forthcoming within half a year.

    What inspired the research, in part, were several women with Stage IIIB or C who, during chemo, took oral vitamin E, C, Co-Q 10, and a few other antioxidants--one of them refusing, even when residual cancer was still found, further consolidation chemo in preference of intravenous C for at least six months. Three of them have been NED (if I recall correctly) for nearly three years: really encouraging. But STUDIES are badly needed!

    I too am beginning to wonder whether too much chemo, after the initial assault needed on a recently diagnosed cancer, compromises our immune systems too much and whether we should more often weigh antioxidants or other prototocols for follow-up treatment.

    Best,
    Rosey
  • RoseyR
    RoseyR Member Posts: 471 Member

    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

    Your oncologist's view of "first four chemos"


    Dear Maggie,

    Hope your platelets are holding up.

    In the meantime I too am debating (with recent platelet problems after fifth (next-to-last) session of chemo whether even to ask my own onc if I really need the 6th treatment.

    Is your onc pretty prominent, or working at a major research treatment center? (Would like to know what she bases her opinon on re relative unimportance of last two treatments--so perhaps I could cite her rationale to my own oncologist.)

    Was there a certain piece of research she based this conclusion on? If so, would appreciate knowing what it was.

    So appreciatively,
    Rosey
  • maggie_wilson
    maggie_wilson Member Posts: 596
    RoseyR said:

    Your oncologist's view of "first four chemos"


    Dear Maggie,

    Hope your platelets are holding up.

    In the meantime I too am debating (with recent platelet problems after fifth (next-to-last) session of chemo whether even to ask my own onc if I really need the 6th treatment.

    Is your onc pretty prominent, or working at a major research treatment center? (Would like to know what she bases her opinon on re relative unimportance of last two treatments--so perhaps I could cite her rationale to my own oncologist.)

    Was there a certain piece of research she based this conclusion on? If so, would appreciate knowing what it was.

    So appreciatively,
    Rosey

    rosey
    no, my oncologist is not prominent (she's young), and does not work at a major research treatment center. what she does do is stay current with the research, is very smart and thoughtful, attends as many conferences as she can, and is overall a darn good doctor. very responsible. she also works in association with 3 other women doctors and consults with them.

    i don't think she would actually say that the last two chemos were relatively unimportant, only that the first four are most effective. after all, when i asked her what she would do, she really thought about it, then said she'd probably have the 6th. i didn't ask her what she based her thinking that the first 4 chemos are the most effective, though probably should have. i'll see her in a few weeks, and i can ask her then. i think she must have based her conclusion on research she'd read, probably a combination of research. again, i can ask her. hope it won't be too late for you to make a decision about your 6th treatment.

    thanx, my platelets are holding up. no transfusion, thank goodness. i go in monday for more labs, and if counts are good enough, will have chemo then and the following monday. and that should be that. probably my ca 125 will not go down as dramatically as it has, but i do believe it will go down some.

    i've come to believe that taking the best care of my immune system, boosting it when i can, is the way for me to go. after all, it was our immune systems that, for some reason, weren't able to fight off the cancer cells.

    sorry not to be of more help. can you ask your oncologist if you absolutely need the 6th cycle if your ca 125 is within the "normal" range, even without citing backup evidence? if it would be ok with you, would you post what you decide to do, and if you ask your doctor about the 6th, what he/she says?

    sisterhood,
    maggie
  • maggie_wilson
    maggie_wilson Member Posts: 596
    RoseyR said:

    Vitamin C Studies


    Maggie and All,

    Assume you know that Jeanne Driscoll (reearcher, U of Kansas) got a major grant to research the effects of intravenous Vitamin C on treatment of gynecological cancers. Results should be forthcoming within half a year.

    What inspired the research, in part, were several women with Stage IIIB or C who, during chemo, took oral vitamin E, C, Co-Q 10, and a few other antioxidants--one of them refusing, even when residual cancer was still found, further consolidation chemo in preference of intravenous C for at least six months. Three of them have been NED (if I recall correctly) for nearly three years: really encouraging. But STUDIES are badly needed!

    I too am beginning to wonder whether too much chemo, after the initial assault needed on a recently diagnosed cancer, compromises our immune systems too much and whether we should more often weigh antioxidants or other prototocols for follow-up treatment.

    Best,
    Rosey

    rosey
    i didn't realize that you also posted re: vitamin c studies. i just today checked out a link my acupuncturist gave me about commonly asked questions re: vitamin c iv, and what to say to our oncologists. the link was to the university of kansas medical center, but the page i was looking for was no longer there! it could be somewhere else on their website, and i could call about this. no, i did not know that jeanne driscoll just got a major grant to research the effects of iv vitamin c, but it makes me happy to hear about it.

    my acupuncturist, who's had breast cancer twice, and who's mother had ovarian cancer, believes the less chemo the better. i so respect what she has to say, and her overall knowledge and competence, that i am reassured that i'm doing the right thing. someone on this site reminded me that one woman she recalls had less than the 6 cycles because she was having trouble with the chemo, and is still ned today after a couple years, i think. i've heard of others stopping before the recommended protocol, but usually because they were having trouble tolerating the chemo. i have a hard time too, but i could do it; but believe now it's not necessary and maybe even harmful. so i agree with your wondering......

    my oncologist also said i could take whatever vitamins i wanted during chemo, that there was no evidence that it interfered with chemo. oh, i forgot to mention that my doctor is absolutely evidence-driven, that's why i believe she wouldn't say anything without having strong evidence to back her up. i haven't taken many vitamins during this chemo because swallowing pills tends to make me sick, but i believe in them. i plan on taking powdered vit c during my 5th chemo.

    sisterhood,
    maggie
  • Ro10
    Ro10 Member Posts: 1,561 Member

    rosey
    no, my oncologist is not prominent (she's young), and does not work at a major research treatment center. what she does do is stay current with the research, is very smart and thoughtful, attends as many conferences as she can, and is overall a darn good doctor. very responsible. she also works in association with 3 other women doctors and consults with them.

    i don't think she would actually say that the last two chemos were relatively unimportant, only that the first four are most effective. after all, when i asked her what she would do, she really thought about it, then said she'd probably have the 6th. i didn't ask her what she based her thinking that the first 4 chemos are the most effective, though probably should have. i'll see her in a few weeks, and i can ask her then. i think she must have based her conclusion on research she'd read, probably a combination of research. again, i can ask her. hope it won't be too late for you to make a decision about your 6th treatment.

    thanx, my platelets are holding up. no transfusion, thank goodness. i go in monday for more labs, and if counts are good enough, will have chemo then and the following monday. and that should be that. probably my ca 125 will not go down as dramatically as it has, but i do believe it will go down some.

    i've come to believe that taking the best care of my immune system, boosting it when i can, is the way for me to go. after all, it was our immune systems that, for some reason, weren't able to fight off the cancer cells.

    sorry not to be of more help. can you ask your oncologist if you absolutely need the 6th cycle if your ca 125 is within the "normal" range, even without citing backup evidence? if it would be ok with you, would you post what you decide to do, and if you ask your doctor about the 6th, what he/she says?

    sisterhood,
    maggie

    Maggie my onocologist always said the CA 125 is just a number
    When I started my "slow recurrence" after my first session of chemo treatments and radiation in Nov 09, my onocologist said he does not become concerned about rising CA 125's as it is just a number. He only became concerned when the CAT scans began to show changes. He thought I would be in treatment within a year, however I was able to go 18 months before I started the second session of chemo. He said he felt it was important to save chemo for when it was really necessary, and let the body recover for as long as possible after the initial chemo and radiation.

    My CA 125 went up slowly at first and towards the end it jumped more quickly as the CAT scan showed slow progression of the size of my lymph nodes. They were watching 4 different nodes. My CA 125 rose as high as 1500's before I started treatment. But up until the last CAT scan there was minimal changes in the lymph nodes.

    I am hoping I have another 18 months to be treatment free. I'd like my body to recover from this last session of chemo.

    Glad to hear your platelets are coming up. Good luck with your 5th chemo. In peace and caring.
  • Ro10
    Ro10 Member Posts: 1,561 Member

    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 thinking of you
    I am so sorry to hear about your tiredness and shortness of breath. Sorry it ruined your fun at the beach. I hope your liver is not increasing in size. I hope you are able to have the other side of your liver radioembolization done as scheduled and it makes you feel better. You are a warrior, and I admire your strength and perserverance. Good luck with learning to give yourself the Lovenox shots. I had to give myself Vitamin B6 shota when I was pregnant, because I had constant nausea and vomiting. I am a nurse, but I had a hard time giving myself the shots. The medicine would burn when injected, so I would get the needle in my leg, and then have to force myself to inject the medicine. I hope the Prilosec and baby aspirin make you feel better. In peace and caring.
  • maggie_wilson
    maggie_wilson Member Posts: 596
    Ro10 said:

    Maggie my onocologist always said the CA 125 is just a number
    When I started my "slow recurrence" after my first session of chemo treatments and radiation in Nov 09, my onocologist said he does not become concerned about rising CA 125's as it is just a number. He only became concerned when the CAT scans began to show changes. He thought I would be in treatment within a year, however I was able to go 18 months before I started the second session of chemo. He said he felt it was important to save chemo for when it was really necessary, and let the body recover for as long as possible after the initial chemo and radiation.

    My CA 125 went up slowly at first and towards the end it jumped more quickly as the CAT scan showed slow progression of the size of my lymph nodes. They were watching 4 different nodes. My CA 125 rose as high as 1500's before I started treatment. But up until the last CAT scan there was minimal changes in the lymph nodes.

    I am hoping I have another 18 months to be treatment free. I'd like my body to recover from this last session of chemo.

    Glad to hear your platelets are coming up. Good luck with your 5th chemo. In peace and caring.

    ro, i do like what your doctor says re: ca 125
    my ca 125s have, however, always been accurate indicators of what was going on. my doctor tends to look at the ca 125 in combination with whatever symptoms i report. then she'll do a ct or pet scan . so i'm not overly radiated! my doctor also wants to go as long as possible between chemos to let my body recover. i think she may have also said that the longer the time in between, the more effective the chemo can be. as i've posted, she isn't an idle talker.

    that's so great that you went 18 months before another chemo; i went nearly 18 months myself. mostly it was great not being in treatment. actually, two of those months i was on first tamoxifen, then megace, but they didn't do anything. i'm not sorry i tried hormones before going back into chemo, however. may we both have long remissions, may we all have long remissions.

    are you still feeling nauseated? you didn't say what you do for it. if you don't mind saying, i'd be interested to know.

    take care, and thanks for letting me know how it's gone for you. i can see there was a disconnect between your ca 125 and what was going on inside.

    sisterhood,
    maggie
  • Songflower
    Songflower Member Posts: 608
    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

    Understanding this Cancer
    I try to understand this cancer too. I realize mine is very agressive after the characteristics of the tumor were done. What I don't understand is that I never have any cancer in a lymph node. I believe mine travels in the blood. It just shows you we need more research.

    Maggie I also worry about your move to treat with high doses of Vitamin C, etc. I think we have to be careful with this. Remember they have to be excreted. My Gyn Onc said that it is much better to get vitamins from food. Every morning have raspberries, strawberries, blueberries for breakfast. Please be careful making this move. Also, avoid vitamins during chemo; sometimes they interfere with chemo.

    Love, Diane
  • maggie_wilson
    maggie_wilson Member Posts: 596

    Understanding this Cancer
    I try to understand this cancer too. I realize mine is very agressive after the characteristics of the tumor were done. What I don't understand is that I never have any cancer in a lymph node. I believe mine travels in the blood. It just shows you we need more research.

    Maggie I also worry about your move to treat with high doses of Vitamin C, etc. I think we have to be careful with this. Remember they have to be excreted. My Gyn Onc said that it is much better to get vitamins from food. Every morning have raspberries, strawberries, blueberries for breakfast. Please be careful making this move. Also, avoid vitamins during chemo; sometimes they interfere with chemo.

    Love, Diane

    diane
    thanx for your concern. i'm definitely going to check out high dose vit c iv, and then see if it's appropriate for me. i've only heard, anecdotally, good things about it. just learned there's a study of it at kansas city medical center; a researcher was given a grant to study the effects of iv vit c on gynecological cancers, and supposedly results will be out in about 6 months. did you see that post?

    my oncologist, who is nothing, if not evidence-driven, says there's no evidence to suggest that vitamins interfere with chemo, though that's the conventional thinking. she said i could take whatever vitamins i want during chemo. since hopefully i have only one left, it will be the only one i take powdered vit c with and maybe some b and e. it's a question of whom, ultimately, do we trust. i have to go with the thinking of my own doctor since she's done right be me so far, and i really respect her thinking and her flexiblity. even if the vitamins interfered with the chemo, it would only be one cycle. diane, if i don't try the iv vitamin c, it's only going to be chemo for the rest of my life, and frankly i can't bear that idea--even if i end up doing that. i need to try something different first, something not harmful, or certainly less harmful than chemo, or i'll have a hard time living with myself. i guess that's what it comes down to: what we can live with.

    again, i appreciate your concern. and i agree, this cancer is so crazy and unpredictable, that really we just have to make our best guesses.

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

    diane
    thanx for your concern. i'm definitely going to check out high dose vit c iv, and then see if it's appropriate for me. i've only heard, anecdotally, good things about it. just learned there's a study of it at kansas city medical center; a researcher was given a grant to study the effects of iv vit c on gynecological cancers, and supposedly results will be out in about 6 months. did you see that post?

    my oncologist, who is nothing, if not evidence-driven, says there's no evidence to suggest that vitamins interfere with chemo, though that's the conventional thinking. she said i could take whatever vitamins i want during chemo. since hopefully i have only one left, it will be the only one i take powdered vit c with and maybe some b and e. it's a question of whom, ultimately, do we trust. i have to go with the thinking of my own doctor since she's done right be me so far, and i really respect her thinking and her flexiblity. even if the vitamins interfered with the chemo, it would only be one cycle. diane, if i don't try the iv vitamin c, it's only going to be chemo for the rest of my life, and frankly i can't bear that idea--even if i end up doing that. i need to try something different first, something not harmful, or certainly less harmful than chemo, or i'll have a hard time living with myself. i guess that's what it comes down to: what we can live with.

    again, i appreciate your concern. and i agree, this cancer is so crazy and unpredictable, that really we just have to make our best guesses.

    sisterhood and love,
    maggie

    Maggie
    When I mentioned earlier that my onco told me it was OK to take Vitamin C during chemo, it was because I was not taken mega doses of it or IV. I was, and still am, taking it in powder.

    I agreed with Diane, please be careful.
  • maggie_wilson
    maggie_wilson Member Posts: 596
    Fayard said:

    Maggie
    When I mentioned earlier that my onco told me it was OK to take Vitamin C during chemo, it was because I was not taken mega doses of it or IV. I was, and still am, taking it in powder.

    I agreed with Diane, please be careful.

    fayard,
    thanx so much for your concern. in all the readings i've done on high dose vit c, i haven't come across any harmful effects, which doesn't mean there aren't any. i'm not taking many vitamins during chemo, just a little powdered vit c for the last cycle. no high doses iv.

    ultimately we have to trust ourselves. e.g., yesterday i went in for chemo, but my platelets were a little low. but because the trend was upward my doctor and nurse left it up to me, though i felt that the nurse was encouraging me to do chemo now. even though, she said that it was almost a given that next week my platelets would be so low i'd have to skip it, plus have more labs before i came in and possibly a platelet transfusion. now why would i do that, rather than skip this week, feel better, and be in better shape for next week, plus no extra labs except when i come in next monday, and almost certainly not a transfusion? so i declined and went home. it wouln't be that i'd be saving any time by having chemo yesterday. i think it was more convenient for the nurse . i didn't have a chance to talk to my doctor directly, so i'm not sure exactly what she said, but i do know she wouldn't have pushed me to do it.

    so i have another week of feeling relatively better, i'm sure my platelets will go up to par by next moday, and i'll go from there. they could even hold so that i could have my last infusion by the following monday.

    i will speak to my doctor about high dose iv vit c before i do anything

    sisterhood, and well being,

    maggie
  • Fayard
    Fayard Member Posts: 438 Member

    fayard,
    thanx so much for your concern. in all the readings i've done on high dose vit c, i haven't come across any harmful effects, which doesn't mean there aren't any. i'm not taking many vitamins during chemo, just a little powdered vit c for the last cycle. no high doses iv.

    ultimately we have to trust ourselves. e.g., yesterday i went in for chemo, but my platelets were a little low. but because the trend was upward my doctor and nurse left it up to me, though i felt that the nurse was encouraging me to do chemo now. even though, she said that it was almost a given that next week my platelets would be so low i'd have to skip it, plus have more labs before i came in and possibly a platelet transfusion. now why would i do that, rather than skip this week, feel better, and be in better shape for next week, plus no extra labs except when i come in next monday, and almost certainly not a transfusion? so i declined and went home. it wouln't be that i'd be saving any time by having chemo yesterday. i think it was more convenient for the nurse . i didn't have a chance to talk to my doctor directly, so i'm not sure exactly what she said, but i do know she wouldn't have pushed me to do it.

    so i have another week of feeling relatively better, i'm sure my platelets will go up to par by next moday, and i'll go from there. they could even hold so that i could have my last infusion by the following monday.

    i will speak to my doctor about high dose iv vit c before i do anything

    sisterhood, and well being,

    maggie

    Maggie
    Rest a lot and eat what you need to bring your platelets up for the next round.

    You can do it!