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

maggie_wilson said:

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

upsofloating said:

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 said:

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

lindaprocopio said:

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 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

maggie_wilson said:

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_wilson said:

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