Bottle o Tamoxifen
Comments
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Murphmort, I read that book. I found it very interesting. I did change my workout somewhat, but still nothing. I did enjoy the book though.
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Helena- you asked your ONC before you stopped for a while, yes? Damn i am sorry (for both of us and all) that its the Tamox causing your down time
Hope the respite removes that SE!Linda- damn. I know you work out a lot and of course your hubby is right (sounds like a good'un!) I was just hoping that changing your excercises could give you back your waistline b/c my friend who is both gym trainer and a bc person like us said pilates would be best for getting the curves back and the waistline cut. This from the theory that the waist line problem on Tamox is b/c the body is acting more like a man's body. You are kinda my bellwether, because you are so fit and active. (I have always been overweight and my only real exercise is walking and the elliptical trainer, where you have always been slim and really exercise.) Weight gain and the periods too
. But you are considerably younger than me and you had children which prolongs your fertility. (Mine was another story, surrogates, donor etc...) Susan, congratulations finishing RADs!!!
OT- anyone got a recommendation for a good book for kids to help understand their mom's breast cancer? My pal is diagnosed with DCIS, she is planning a double mast, her daughters are like 5 and 9 years old. Many thanks for post or PMs with good books. Thanks!
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I am joining this discussion - glad I found it; I have been on tamoxifen for two months now. I dont think I am having any side effects - other than nausea in the afternoon so thinking I will move my pill to night. I have NOT lost or gained - about the same, but hoping to lose at least 15. Cant seem to get it started despite xercise; YES, YES new thickening in the waist, but could that be age? I turned 50 and things just start to change. I have not restarted my period since chemo and have minor hot flashes.
I am a bit stressed about what to eat /not eat and /or supplements. Soy, no soy; flax, no flax; acai, no acai . reservatral, no reservatrol .....and the list goes on. I also read there are items that can affect liver metabolism and tamoxifen effectiveness - though my onco said everything in moderation. Not to go overboard on anything. I have spent so much time on line reading and find so much in conflict.
I think I am going to go heavy on protein and veggies for six weeks and see if I can get the waist down -
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Kerl, good luck! I also do the lots of veggies, not a lot of meat, but tons of seafood. Even thought I have gained weight from Tamox, I know I a healthy.
Rachel, you may not gain any weight. Just watch what you eat and exercise. Yes, I have an awesome hubby, very lucky in that dept. He does put it all in perspective for me when I get depressed about gaining weight. Your friend is correct, I was always told to mix up your regime so your body does not get used to one thing. That is why my workout varies weekly. Like I mentioned above, I walk at least 3 miles a day for sanity. Keep checking in a we can keep each other informed. The book mentioned above my Morphmort was helpful. I got it at my Library. Like Morphmort, it was suggested that I take all resisitece away when working on a treadmill or eliptical. Who new??
Best of luck to you!
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susan13 - I also take a low dose aspirin - actually baby aspirin - everyday with the Tamox. Was told by my onc to do this. Congratulations on being done with radiation! I started the Tamox 3 weeks ago. I was a bit disoriented and dizzy the first 2 weeks but this last week has been better. Good luck!
Sue
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I looked online to see if I could find anything about supplements and Tamoxifen. My ONC just told me not to take SSRI (a particular class of anti-depresants) but said nothing else.
http://www.evitamins.com/healthnotes.asp?ContentID=1509008
May be Beneficial: Supportive interaction-Taking these supplements may support or otherwise help your medication work better.
Gamma linolenic acid (GLA)
Melatonin*
Tocotrienols*
An asterisk (*) next to an item in the summary indicates that the interaction is supported only by weak, fragmentary, and/or contradictory scientific evidence.
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Avoid: Adverse interaction-Avoid these supplements when taking this medication because taking them together may cause undesirable or dangerous results.
Citrus flavonoids (tangeretin)
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Another source: http://www.breastcanceroptions.org/Vitamin,Herb,DrugInte.asp - check this one out, lots of info here. Just putting some below.
citrus flavonoid tangeretin (found primarily in the peel of citrus fruits) interferes with the ability of tamoxifen to inhibit tumor growth. Although the evidence is far from conclusive, people taking tamoxifen should probably avoid citrus bioflavonoid supplements, as well as beverages and foods to which citrus peel oils have been added.
Ginseng may enhance estrogen levels and interfere with the anti-cancer drug tamoxifen. It may also disrupt the effectiveness of glaucoma and blood pressure medication.
Soy The use of dietary isoflavone supplements by postmenopausal women with breast cancer is increasing. Studies to determine whether genistein and daidzein, (the major phytoestrogens in soy), can stimulate breast cancer growth have been done and the results are conflicting in many cases.
Genistein and daidzein at low concentrations were found to stimulate breast tumor growth in in vitro and in vivo animal studies, and antagonize the antitumor effect of tamoxifen in vitro.
At high concentrations, genistein inhibited tumor growth and enhanced the effect of tamoxifen in vitro.
CONCLUSIONS: Genistein and daidzein may stimulate existing breast tumor growth and antagonize the effects of tamoxifen. Women with current or past breast cancer should be aware of the risks of potential tumor growth when taking soy products and they should be used in moderation and in fermented form (miso, Tempeh). What you don't want to do is take soy tablets or capsules that contain isoflavones or genestein. These purified forms of soy are not the same as soy, and they appear to do more harm than good.
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Yeeaah, congrats Sue on completing Rads.
Keryl, I have lost weight on Tamoxifen probably more due to the mood swing side effects than anything else but I also run and eat lots of vegies but still splurge every now and then. I actually can't afford to lose weight, which some of you may not think is a problem, but at 47 (just turned) it ain't a good look especially around the face and neck area.
And Rachel, no I didn't check with my Onc first, I live in an area of Australia which has one Oncologist for about a million people so getting an appointment is a nightmare, however I am seeing him this afternoon (literally cried and told the receptionist that I am ditching the pill - it worked!).
Good luck all you lovely ladies on the Tamoxifen train ... hopefully it won't be a bumpy ride for most of us!
soft hugs
Helena
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Sue, what is the baby aspirin supposed to do? Minimize the flash, or what?
Springtime, thanks for the info. on supplements - and the website.
I guess I will stick with a good multivitamin where you can check ingredients. My onco also said avoid those that say "proprietary ingredients" since you cannot verify what is in them.
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I was told to avoid soy (moderation is the key word) and do not eat grapefruit as it inhibits the tamoxifen's effectiveness (I don't remember the technical mumbo jumbo). Also avoid the SSRI's as mentioned above.
Keryl I think the baby asprin is to help avoid blood clots.
Hugs to all!
Trish
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I have been really careful about what I eat and trying not to gain weight, but someone still asked if I was pregnant! I guess I have a pooch!
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Keryl - I think the baby aspirin is supposed to prevent blood clots which can be a SE of Tamox. Good luck on your journey!
Sue
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oh no!!! Mfgibby, did you smack them or what! If anybody asks me if I am preggers I swear I will punch them in the snozzola!!!
))))Spring.
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keryl- on Soy, the long and short of it is they don't know for sure. For my thinking, if there's a question, I can do without until they find out! They are doing studies. Also, it was after I started drinking (a lot of) soy milk that I got a cyst last June and then in January I had breast cancer. They are technically unrelated... but... for me ... no soy!
Here's what Susan Love says about it.
and an excerpt summing up what she says:
"Should women who have had breast cancer eat soy? Soy as food is probably safe for women with breast cancer, but the final answers aren't in yet. You will have to decide for yourself whether you want to have soy in your diet. If you do, try eating one serving (40 grams) of soy a day. But if the idea of eating soy worries you, then don't eat it. There are many other good protein alternatives. What if you are taking tamoxifen? Soy will not counteract tamoxifen. In fact, a study in mice found that soy appeared to actually make tamoxifen work better. Still, once again, if the idea of eating soy worries you, don't eat it."
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Linda- damn! Take away resistance on the elliptical trainer? Ya know, I was wondering about that, because it makes my calves feel thick and achy, and I am not really seeing a benefit. I just thought it was helping to burn calories and build strength and tone. I figured the leg stiffness would worry me on Tamoxifen, the whole leg/blood clot thing. What I do is walk for an hour at highest incline and mid-high resistance carrying 5lb weights in my hands. Or... I have my 25+ pound kid on my back and have it at highest incline and half way resistance, no weights. I love the weights, I feel my arms and upper body tightening up. I love having the kid on my back, again, I feel it in my upper body. I guess it makes sense to get rid of the resistance on my legs, but seems too easy! There is NO SPACE here for me to do my pilates. I am in a temporary house - it was supposed to be temporary from 2004, but that's become a big lawsuit, yada yada, I have no floor space because everything I own is crammed into a space smaller than my home. I have to find a place where i can do pilates. I will. Thanks!
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Sydney and Susan- was there some reason why you had a special concern about the clots that led your docs to say you should be taking the aspirin? You think I should ask my ONC?
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Helena- my cousin is from Oz, everytime I see you I think of Priscilla Queen of the Desert... and it sounds like that's the kind of trip you have to take to see your ONC! I am glad you are seeing the ONC and can ask. I was afraid you were just taking my advice, and my advice and 25 cents will get you a dial tone in NYC...
oh and my pal on March RADS, Catherine, has a birthday tomorrow and she's wiped from RADS and saying she is planning to blow it off (although she is meeting friends to celebrate her bday on Sunday for brunch). Here's her post, its the last one on the page. I told her to do SOMETHING, some small thing, on her actual bday, and told her about what happened to you.
I had such a wonderful day today, really enjoying my life and every moment with my kid, just as I did before the dx. I will know if its the Tamoxifen if I lose that. I guess I would have to try Effexor too.
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Trish, I read something about the grapefruit and here's what Susan Love says about it
again, bottom line excerpt she says: "What do this study's findings mean for women who are on hormone therapy to treat menopausal symptoms? Should you not eat grapefruit if you are at high risk for breast cancer? What if you already have had breast cancer? Or are on tamoxifen or an aromatase inhibitor? What about premenopausal women? Should they be worried too?
Given the media attention this study has received, it makes sense that women would be asking questions such as these. But as Dr. Monroe noted, this is the first study done on this topic and, until the findings are replicated, I don’t think that postmenopausal women should foreswear grapefruit forever. That said, if you do eat a lot of grapefruit, especially if you are taking hormone therapy to treat menopausal symptoms or are at increased risk for breast cancer, you might want to replace some of that grapefruit with oranges or other citrus fruit. "
I can't eat grapefruits or citrus anyway, too much acid. Wah!
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Hiya Mary
Nice to see ya here! You are my other leader in this Tamoxifen trip... thank you so much for the advice and support! 0 -
Stuff I missed
Helena- every woman I know who started Tamoxifen on or just before their period had the bad SE's. Well that's not exactly right, but more like the women who intentionally took it at that time in the hope of it working with their system felt that it made them depressed and period-type symptoms. I had thought that would be the ideal time to take it because that's when the body is already reducing its estrogen. Well now i am abandoning that theory. And I saw that the break for a couple weeks worked for some gals on the other thread, so here's hoping that's what happened to you and that the time off will straighten it out!!!
Mary- someone asked if you were preggers? Actually, I asked the nurse practitioner at RADS - and she wasn't! Doh and doh!!!! Eh, it was probably just the way you were standing. Stuff like that can get to you. I still remember the guy who told me that I MUST be my child's grandmother... feh.
Spring- hugs and thanks for the info!
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Grapefruit is a common culprit --it also causes problems with Xanax, it can allow it to build up in your system.
About aspirin, I've had several docs say that women have more bleeds when they take it, and my onc felt that was more dangerous than a clot. Ask your onc about fish oil instead, it might be a good alternative.
Thoughts on flax for ER+ gals. I've been told it is OK and I actually wrote to the woman in Canada who has done studies, but only on rodents. Seems Ok, but would like to know if others have information.
Thanks,
Karen
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Rachel, you made me laugh - yes, I can laugh. Saw my Onc this afternoon and he was great. Yes, have a break, yes it might make a difference to what time in your cycle you first take it (wasn't too optimistic though) but he was all for me having a break and giving it another go. He really wants me to stay on it and if the break will help - go for it. Phew, talk about a relief. We are also ordering the CYP2D6 (?) test once I get back on the stuff as he said I might be getting the huge mood swings because I am a low metaboliser (???) - thought it would be the other way round but there you go.
As for reminding you of Priscilla Queen of the Desert - seeing they were all drag queens I think I should go light on the make-up from now on LOL.
Have a great Friday everyone. (its thursday nite over here)
Helena
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Rachel, I use as litle resistence as possible on my eliptical and no incline on the treadmiil. I used to do both, but the above mentioned book says not too. I miss the days of having my little ones on my back while I exercise. THey used to love that!! Now they are 10 and 14 so we play soccer, street hockey baseball, etc together instead. I love playing sports with them.
BTW, I eat milled flax seed everyday. No soy. I feel it is helpful, but who really knows!
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Helena- quick, look out in your driveway... do you have a large bus with a big stiletto on top ?
Linda- if I took down the resistance AND the incline on my elliptical... oh I was about to say I would have no way to burn enough calories and now I realize... the way to burn more calories would be to pedal FASTER... and that's what I don't want to do because it's more work... but then, that's how to burn calories. I don't push myself, never ran, never jogged. Hmmmm. Damn, gettin' old is a bitch, but it's better than the alternative.
I am so happy I ate like a pig and partied and slept late all through my youth, because I knew I'd have to watch what I ate, exercise, go to bed earlier and all that crap now... and the music was better and the clubs were better and the parties were better 'way back then!
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oh and what the heck is milled flax seed and how does one eat it and why?
In a perfect world we could counteract the side effects with a cheeseburger and fries with a chocolate milkshake.... and lose weight! and lower recurrence... and chocolate would cure cancer!
milled flax seed.... uck puti!!!!
OK, OK, I will go look it up... :::sigh:::
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I get milled flax seed at our super Wal-mart, near flour, etc. It's ground up (I think that is the milled part). Apparently helps with Estrogen metabolism and ratio of good to bad estrogen. Apparently, it's better if you buy it in seed form and grind it yourself, I've just never found it like that. Comes in a box and you refrigerate after opening.
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Flax seed is o.k. to take with Tamoxifen?
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Rachel, you crack me up! Yes, it's much easier and I can use the eliptical longer. You don't get that real tight feeling in your legs like before, but youa re burning calories.
Imays - there is so much research done on flax and Tamox it's unbelievable. I would suggest you use Dr. Google an see what you come up with. Flax acts differently in our bodies than soy. Some studies show that flax can enhance the effects of Tamox. I just feel better taking it. Good luck with your research!
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RachelBC - I asked my onc what the SE of Tamox were and she told me about the blood clot thing. I told I was concerned as there is a lot of stroke in my father's family. She said it was different then that. (I'm guessing because that's caused by blocked arteries not by clotting blood). She told me ten to take a baby aspirin to minimalize the risk. I think you should ask your onc if you're wondering about it. It can't hurt! Let me know how you make out. And hey, I wouldn't be too worried about the RADS nurse thing. The stress of that whole thing can get to a person and if she doesn't get that she shouldn't be doing it.
Sue
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Linda, just did the workout (with kiddie on my back) on the trainer at highest incline but no resistance. The readout said I burned 400 calories instead of 600- but... I did notice that I was using my muscles differently, and I did try to pick up the speed. I can't go longer, the kid really starts to wriggle like crazy-
oh btw, what kind of carrier did you use to keep the kid on your back? My 25 pound 15 month old (I think over 25 inches) has outgrown the Ergo and I can't see getting into one of those metal frame things, so i have been using a mobywrap... now that's a scene when I try to get him in it...
I have to find some floor space to do the frikin pilates I think to make up the difference. My only alternate in workouts is going out for a walkabout in the city, usually by the river.
Sydney- oh she was fine about it... I was just about to crack on the nurse who said that to mfgibby and then realized I had made the same mistake... And what you say about the aspirin makes sense too, thank you!
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Hey ladies!!! I'm not yet due for tamoxifen as I have yet to get through radiation, but will be on the T train (I like that phrase). I was told by my onc that weight gain is common after chemo (finished my chemo 5/20/09), was on AC then paclitaxel injection. What are the side effects of Tamoxifen? Are they similiar to the side effects of chemo? I felt fatigue, slightly arthrithic, and slight queasiness on chemo. Thanks
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Rachel, Sounds like you got a good workout in! I wish I could remember what kind of carriers I used with my boys. I don't. They are 10 and 14 now, so it was many years ago that I used one. I did have the frnt carrier and a metal back carrier. I used to love to walk the beach with my kids on my back. They would try and stand up in the carrier and look over my shoulders as we walked. I miss those days!
Bethie, Welcome. There are so many different side effects, then there could be none. I would suggest going back in this thread and read, read, read. Good luck with your radiation and we look forward to seeing you on the Tamoxitrain. I'll be in the chocolate car!
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Linda- thank you. I was told by so many people to enjoy these days because they never come back and they are so special. I swear I absolutely did every day. Then came the dx. I am so happy to be back in that place where I am loving every day and enjoying every minute of this little kid. Yes, I am terrified that Tamoxifen would disrupt that. But I am heartened from reading the studies ... (Bethie, 13000 women were in a trial about the effectiveness of Tamoxifen preventing recurrences. They were also monitored for side effects. Half the group was taking a placebo. Both groups did report a whole lotta side effects- but the good news is that the placebo group has the same side effects as the Tamoxifen except 2 things are more on Taxmoxifen: hot flashes and vaginal discharge, both of which are reportedly mild or manageable or only bothersome for a handful of months. 80% of women haven't got a problem with it and its really good at cutting recurrence. You can stop any time, so the point is to take it and see, and hope you are a part of the big majority, or work on it if you have a problem like the minority. But I can't imagine- even though I have done neither chemo or Tamoxifen... yet... that there is ANY comparison between being on chemo and being on Tamoxifen! ) ... and by the experiences here.
Walking on the beach with my kid... wow that sounds really cool!
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Hello evereyone! I'm glad I've found this thread on Tamoxifen, but there are a lot of back pages to read and I find it so hard to focus on the computer screen after a time.
I would just like to ask if anyone here had their period during their Tamoxifen intake. I was diagnosed with BC when I was only 36 years old and experienced symptoms of menopause during the chemo. I started my tamoxifen March 08 and am still taking it until now. I haven't had my period since January of last year 2008 (maybe that's because of the taxotere); however, to my surprise, it came yesterday. I thought I wouldn't have my period while taking the tamoxifen.
Please enlighten me. thank you.
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Hello Ladies...I'm comming abord the Tamoxifen train. I got my first bottle today. The onc says 5years and currently I still having chemopause (last chemo was April). I have been reading these pages off and on and finnally made it to the end! I noticed the info pamplet I got with the Tamox said (in caps) A NON HORMONAL BC IS RECOMMENDED for premenopausal women. So a survey of premenopausal ladies and what kind of BC your using? I have never used a diaphram and am thinking about an iud but it sounds scary especially since I am suposed be aware of unusual bleeding. its so confusing .
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Hey DV8Q - nice to hear that you need to use birth control LOL - no seriously we use condoms when we do need them (not very often believe me)!! Not sure if I would use an IUD when you are on Tamoxifen but don't have any kind of info to back it up other than all the things going on with the endometrial lining etc. I would google Tamoxifen and birth control and see what comes up. Sorry I can't be of much more help.
good luck
Helena
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