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

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

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

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

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's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

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's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

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's picture
Songflower
Posts: 632
Joined: Apr 2009

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's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

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's picture
Songflower
Posts: 632
Joined: Apr 2009

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's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

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's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

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's picture
Songflower
Posts: 632
Joined: Apr 2009

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's picture
daisy366
Posts: 1493
Joined: Mar 2009

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's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

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's picture
daisy366
Posts: 1493
Joined: Mar 2009

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's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

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's picture
daisy366
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Joined: Mar 2009

I'm soooooo sorry to hear of your fatigue and discomfort <<<>>>. 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's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

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

Ro10's picture
Ro10
Posts: 1483
Joined: Jan 2009

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.

Fayard's picture
Fayard
Posts: 343
Joined: May 2011

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's picture
daisy366
Posts: 1493
Joined: Mar 2009

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's picture
Songflower
Posts: 632
Joined: Apr 2009

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's picture
daisy366
Posts: 1493
Joined: Mar 2009

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's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

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's picture
upsofloating
Posts: 473
Joined: Dec 2009

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's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

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
Posts: 140
Joined: Jan 2011

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
Posts: 464
Joined: Feb 2011

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

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

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

RoseyR
Posts: 464
Joined: Feb 2011

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's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

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

Ro10's picture
Ro10
Posts: 1483
Joined: Jan 2009

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.

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

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's picture
Songflower
Posts: 632
Joined: Apr 2009

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's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

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's picture
Fayard
Posts: 343
Joined: May 2011

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's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

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's picture
Fayard
Posts: 343
Joined: May 2011

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

You can do it!

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