Bottle o Tamoxifen
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Hi Everyone,
Lots and lots of doubts as to what we should do about flax seed, soy, and alcohol. I guess we'll
have to trust our doctors to lead us down the right path. We can research on our own too and
see what is being said by the trusted medical groups.
I like that we are discussing it and not fighting about it like so many groups on here do over
every issue it seems. We at least respect each others views and that doesn't mean we have
to agree either. We just try to listen and follow our own conclusions.
Take care.
CatbirdC
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Thanks everyone for those website and info. I knew the soy and alcohol were controversial, but not the flax. I still use soy sauce in stir fry, but I ate a little of that tonight for dinner and then ate a different leftover so I didn't have too much soy. the websites will be helpful for the medications. Right now I take nothing except tamox. and 1 valium at night to help with the discomfort of the TE. Thanks again.
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Hello, still on tamoxifen, still no major se's.
Had a busy weekend and no time to post, so this is just a drive by!!!!!!
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Asked the Certified Oncological Nutritionist at cancer center, she said Flaxseed ok. She recommends the milled ground flaxseed - 2 Tbsp limit/day added to things like cereal, yogurt. Nutritionist are starting the say try to get your vitamins through real food not supplements if possible, better for you that way.
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Thanks Patti, that is what the line is at the Integrated Med Center at my hospital. They say the only supplements should be fish oil, D3, and maybe flax. No vitamins, nothing, get it from food, and that is what I have been trying to do, only today I decided to get my calicum from a giant chocolate milkshake and loved every minute of it! It takes a ton of planning and packing my food, but I try. I guess we won't really know, like Rachel said until there are more studies, and they take time.
Have a great week!
Karen
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Catbird C--I am starting the Omega 3 fish oil--my internist recommended it to reduce blood clot risk since I cannot tolerate aspirin. Mumayan--Did you say chemobrain?! Yeah, I know it well. I couldn't believe how excited I got the other day when I realized I was able to handle a task requiring motor skills while I was talking and thinking. It's been about 6 months since my last T-C (sounds like I'm at an AA meeting....) and I am still "not right," as my grandmother would say. Ainm--Good luck with the port removal! I think I'm about a week shy of 3 months of Tamox, and I am just so grateful that I have not gone bonkers. I think my most aggravating side effect is fatigue, but I think that has lessened. Because of chemo (refer to above....), I can not always remember all my side effects, so maybe that's a good thing! Susie and others--Hang in there; we can do this together! And Harley, I agree with Susie--stick around; we can benefit from your wisdom, and perhaps we can offer you support as well!0
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Okay, now I made it to this page, and I am officially tired(er)--just excuse me for that one. Thanks, Meg, for the carrots + ginger recipe. I can't wait to try it. And to all the others who have posted about flax/omega 3/alcohol/etc, thanks for adding to the long-running debate about how best to care for ourselves post-cancer. I have learned that I will never have all the answers, but I just keep trying to do the best that I can!0
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That is all that we can do Brenda, just do the best that we can. And, we all may differ on some things, but, that doesn't mean anyone is right and someone else is wrong. It just means that we are individuals and follow our own minds, hearts and what our doctors advise us to do.
I know that we aren't suppose to consume alcohol, but, poop on that! I am going to have a drink when I want. It seems that just about everything anymore, someone says or writes, gives you cancer. I choose to live my life, a quality life, be careful, smart, but, not to be afraid.
Ok, I was scared of tamox, ( lol ), but I am on it now. You got me on that one. hehe
Susie
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I like that we are discussing it and not fighting about it like so many groups on here do over
every issue it seems. We at least respect each others views and that doesn't mean we have
to agree either. We just try to listen and follow our own conclusions.
Take care.
CatbirdC
I agree wholeheartedly Bonnie! You said it PERFECTLY!
Susie
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Not to change the subject here, but, has anyone had a needle aspiration done to remove cysts in your breasts? I have had some tissue removed to check to see if it was cancer, and, it wasn't, but, now the surgeon is suggesting a needle aspiration to suck the fluid out or something and then it might or probably will just dissolve? Anyone know anything about this? thanks
Jeanne
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I have had that done twice. The surgeon put a little numbing stuff on my skin then just stuck this big old needle right into the breast and into the cyst. It didn't hurt at all (and I am a real wimp about needles) but the shock, both to me and to my daughter who was with me, was that the fluid that the surgeon aspirated out was GREEN! Bright, kelly green. Ooooh, ick.
Turns out to be very normal. Cyst can be filled with clear, straw, white, or green fluid and be just fine. They tested the fluid for cancer cells the first time, just to be double sure, but the second time it just went into the hazardous waste bin. The surgeon said if that cyst filled again she might need to remove it surgically, but I haven't had any further problems. I have to say, my surgeon seemed to enjoy the whole thing. I think she likes her job.
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Hi Ivorymom,
Watch out with the peel - another tamox no no, which makes me very sad as I have a super cranberry bread recipe, a Christmas tradition here ;-(
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Hi Jeanne,
I have had several needle aspirations in the past - to remove fluid from cysts. Pretty painless and gets rid of the fluid-lump.
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Rachel,
I have no idea why the soap thing appears to work but both my MOm and mother in law swear it does!
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Hi! Joining in here cause I'm due to start Tamox. in about a week...
There is just no way I'm going to read 5,000 posts, so allow me to ask a few quick questions. What is the name of the Tamox. utilization test? Also, when is it appropriate to get it done? Before even taking it or after starting it (and if the second, then how long after?) Thanx!
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Elimar,
It's the CYP2D6 gene test. My oncologist said I would have to be on Tamox for three months before he would give me the test, although some oncologist do it b/f much earlier or even before tamox dosage begins.
There are also a number of substances (some anti depressants, benadryl) that reduce the efficacy of tamox - a list is in the below link.
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Elimar- here is the Tamoxitest
Differing opinions on when and if to have the test done. My ONC feels its not conclusive- even though a lot of gals here have ONCs who are convinced (and some who seem to refuse it even when its clearly called for?) Generally it seems the consensus is if you take Tamox and get the side effects then you already know its working, so "take it and see" Sounds ominous but the great majority of women get the SEs, know its working so ... any case, I haven't taken the Tamoxitest, I got some hot flashes about 2 months after starting it, but I think I will ask my ONC to do the test at my next appt just to see what it says. Bottom line, you can DIY for $300 using that link.
HTH
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It appears the virtually everything is controversial and we all have to make decsions we are comfortable with. I avoid soy. but Ok with flax.
On flax, this is from the American Cancer Society:
http://www.cancer.org/docroot/ETO/content/ETO_5_3X_Flaxseed.asp
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Rachel_BC and j414, thanks for pointing out sites for Tamox. interactions (so many it's SCARY) and the gene testing site (might find out who the baby-daddy is while I'm at it--I'm joking people!)0
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Re: Foods to avoid - Between the foods bad for Tamox and those bad for BC, sometimes I think the list would be shorter if they just told us what we CAN eat. I remember an old sexist joke about a man who married a women who nagged him about everything: his food, his drinking, his exercise, his activities, the punchline being, "You're not going to live, it'll just feel that way. I'm with those who find the balance between being careful and quality of life.0
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Elimar, my oncologist had me take the test to see if I would metabolize tamoxifen, because if I didn't, there was no sense, according to him, in my taking it as it would do me no good. There are other routes to go to protect yourself, according to my doctor.
I was also told to avoid all soy and flax if I know it is in the food or drink as I am ER and PR+. But, my doctor also said it is impossible to not get it at some time because it is hidden in some foods and drinks. But for me to just do my best to not have any.
Welcome and good luck to you. We are here to help, support and encourage you in your fight.
Susie
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And, good morning ladies! Beautiful day here, sun is out, warm, no wind....love it!
Except for THE BEETLES!!! It would be perfect otherwise. LOL
Susie
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bcamnb--you brought up a point about phytoestrogens inhibiting tamoxifen. I think the jury is still out on exactly how phytoestrogens and even tamoxifen actually work. According to my onc--tamoxifen works to fill up the estrogen receptors, like ports, in breast tissue so the more powerful estrogen can't 'dock' there. From what I have read, they believe phytoestrogens work the same way. I can see them being inhibitory to tamoxifen if that is the case since they may take up some ports so tamox can't dock there--however if they work the same as tamox in blocking estrogen docking, it should have the same effect. Issue is i am sure that they don't feel comfortable that phytoestrogens work yet and they do know that tamox works.
I have my own experience with phytoestrogens working. Tamox works to decrease the effect of estrogen on breast tissue (and some others) but actually INCREASES the effect of estrogen on other tissues like uterine and ovaries, bones (which is why it is protective of bones unlike AIs) etc. When I was taking flaxseed in the morning on my cereal I noticed increased 'activity' in my ovaries--I could feel them more, etc. And it turned out I had an ovarian cyst. I stopped taking the flaxseed and noticed these ovarian feelings went away. Also turns out the cyst went away. So I know (my hypothesis!) the flaxseed was working as a phytoestrogen since it increased the estrogen effect in my already sensitized ovaries.
Not to deter anyone from taking flaxseeds--they are great (and not just for digestive purposes, Rachel--that is just a nice side effect) so i encourage people to try them but be aware if you are having ovarian issues you may want to stop... just my experience!!
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Morning all!
Bcamnb, a painless needle aspirtation would be good. The surgeon is going to have an ultrasound in his office to help guide him, even though you can feel them and see them. I am glad you said it was painless. I am a big baby when it comes to that. Thanks for telling me about your experience. And, Revkat, glad I am not the only wimp about this. Thanks for telling me too. I just don't know anyone that has had this done. And, it was green? ew, no offense. I have an appt. for next month to have this done. There was no hurry since it has already been tested and was benign. Thanks all!
If anyone else had a needle aspirtation and would like to share, please do.
Jeanne
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I also wanted to add that for some that cannot metabolize tamoxifen, and, are pre menopausal and hormone receptive postive, some oncologists want to force you into menopause. They do it by using a chemo medication called Zoladex. It is a small capsule type injection that they put under the skin of your stomach that will self release over 30 days to seize your ovaries. You have the injection every 30 days for awhile, then you go to every 3 months for about a year. Then, instead of tamox, they give you Femara, which is usually post menopausal, but, the only other option is to have a complete hysterectomy with ovary removal and some aren't ready or want that. Just thought some might not know this and I found it interesting.
Jeanne
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Jeanne - Actually, one med onc I saw suggested the same thing but using Lupron. I believe it's called Ovarian Suppression, one of the types of Ovarian Ablation (medical term for shutting down the ovaries, either medically or thru surgery). And while it can be used to give you an AI like Femera; it seems that it is also used by more aggressive med oncs in addition to Tamoxifen, kindof a belt and suspender approach. This later approach was suggested for me but right now I'm more into the "If It Aint Broke, Dont Fix it" approach so leaning toward just Tamoxifen alone, and even that was a hard decision. Seeing new medonc on Friday so likely popping myfirst pill soon after.
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re alcohol and breast cancer - check out:
http://www.cbsnews.com/video/watch/?id=3306499n
depressing ;-(((((
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DAMN !!!! I dont smoke, I barely take OTC meds, I watch what I eat and I'm overly single. What vices have they left me ??????!!!!!
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ORANGE PEEL et al:
check out
I had the fruit bread TO MY MOUTH yesterday when I remembered! (and as I've said before, as an intermediate metabolizer, I'm not risking anything!
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Jeanne,
your aspiration sounds a bit more complicated than my aspirations were.
You might ask the doc about applying EMLA cream, a topical anaesthetic you can purchase over the counter, an hour or so before the procedure. I did that for my sentinal node biopsy and it really did numb what needed to be numbed.
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