Bottle o Tamoxifen
Comments
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Interesting. I stopped taking Benedryl about a week ago because of the research. I have been taking melatonin. I asked my ONC about benedryl and he said the same thing. He didn't see any problem with it.
It's confusing because when you look at the info about drug interaction it's all over the place.
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my oncologist didn't have a problem with Benadryl either. However it is not what I read when you research drugs not to take with tamoxifen.
Still having horrible problems with constipation. Currently doing colace twice a day. I really don't want to do Mirlax but it is looking more and more like a must. 57 more months to go.
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I eat raisins.....chocolate covered sometimes even! It seems to help with the constipation without taking something else.
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Hey,eileenr56. You've been on my mind. Happy to know you're doing ok.
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Hey Ladies;
My nutritionist gave me the following advice, which worked after years of horrible constipation (I hear your pain when you say you tried everything) 1. Stop drinking cold fluids. They freeze the digestive system. We weren't designed to drink drinks with ice - we're just accustomed to it mainly in America (even in Europe they drink their beer and coke much closer to room temperature than we do). Only drink room temperature or warm liquids. Period. Try it for a week. 2. Do not drink fluids *during* a meal. Doing so can confuse the function of the digestive system. Your stomach/intestines do not recognize that there is food floating around in that (often cold) beverage, so nothing gets activated. It takes a little getting used to, but you can drink all you want throughout the day, just when you sit down, no glass in front of you. Worked like a charm. I can now drink while eating, every once in a while I have to go back and re-set my system. Let me know if that helps - patience... one day at a time... relief will come!
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By the way, Colace did nothing for me!
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I took the time to read most of the postings. I have been on Tomaxifen for a week. Looks like I do not have a lot to look forward to. The past few months have been a lot worse being diagnosised with ovarian cancer at the same time as breast cancer and being BRCA1+ , 4 surgeries, chemo, I am ready for the Tomaxifen. I am just happy for the heads up. The hardest part for me is that I HATE warm beer
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dear luvlife
sorry to hear. there is always red wine! i love a good beer also. hey, even just cutting out iced drinks would be of some help!
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Oh the things I do and say on red wine... My friends hide the bottle... On my lable it tells me to avoid alchol on Tomaxifn. Anyone have any opinions on the warning?
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Morning gals! You know, there is so much good information on this thread! And nowords, it's so good to know that I CAN take Tylenol PM....Man, I bought this huge bottle...generic, of course!
AND...sirenator! That is great advice about the "hot/cold" issue! I had heard that before, and yes, from a Doctor! But I'm with some of you girls.....I have a "drink" a day....with my Husband... Is that aNOTHER problem? Now I'm afraid to look THAT one up! YOU gals do it, & then let me know! xoxoxoxoox
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Thanks for the input about the ice.
Redsoxfan. Thanks for thinking of me. I'm actually doing fine. How are you doing? I stepped away from the boards for awhile. Just started T a week ago. Other than not going to the bathroom very well, so far so good. I know it's hasn't been long enough to tell yet.
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Chevyboy, you're a riot. My onc also wasn't concerned with Benadryl, though he did say he wouldn't recommend it EVERY night. I think that was more of a direction to address the underlying causes of sleeplessness rather than a concern about the drug thought.
Sirenator, interesting stuff about digestion. Makes sense though. I have occasional issues with constipation on tamoxifen, but prunes and/or colace usually do the trick.
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Oh, and luvlife, when I first filled my T prescription the pharmacist said not to drink and all I could think was FIVE YEARS without a drink? That almost did me in and I was too stunned to ask why. So I went home and surfed the web a little and then after that I asked my onc. The internet info seems to be related to severity of SEs - alcohol and caffeine apparently aggravate hot flashes. My onc said he had never heard of a problem with alcohol and T, so I stopped worrying about it. There is that connection between red wine and BC to think about, but sometimes I feel like there are soooo many potential causes who could possibly avoid them all, and what would your quality of life be like if you did? Because that's important too. No sense being perfectly healthy physically if your mental state is a mess. Just my two cents' worth anyway. And all things in moderation, of course. I'm working on that one. LOL0
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Ok girls... looks like I will be making the switch. My onc told me yesterday that he wants me to switch from Tamoxifen to Arimidex. He said it performs slightly better and has fewer side effects. I reviewed these, and it doesn't seem like there is much difference between then.
I brought up the libido and related "issues" I am having with my Onc yesterday. He was so embarrased and I could tell so uncomfortable. He wants me to talk to my Rad Onc (a female). He said she would be better to talk to since she's a woman and has been doing some investigation on local estrogens and testosterone. I see her next week, and hopefully she can let me try something. He is so conservative, he doesn't want to say that anything is ok, but jeez, gotta think about quality of life. Tell me the risks/benefits and I'll decide myself. And on that note, I still drink beer and wine a few times a week. Seriously, it's bad enough to have cancer and have to go through the treatment but for it to suck all the fun out of the rest of your life - its just not right.
Juli0212 - thanks for the info on the fish oil. I should try that. I just get grumpy thinking about taking yet another pill every day. I already take like 10 a day with the rx and vitamins. ridiculous!
Those struggling with sleeping - try Trazodone. Has been around forever and really no side effects. 1/2 of a 50mg tab at bedtime - has totally changed my life.
Chevyboy - Laughing about your past post... we are doing what we can to keep a spark going. We are way more open to new things than I would have guessed 5 yrs ago! LOL
Love y'all xoxoxox
Laura
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Little Laura.....when you go see your "Rad oncologist"....Just tell her "Chevyboy" said to "go rent a movie," & stop at the "big girls store" and that will help your libido! If she falls over in a dead faint, then just don't try doing that again!
I HATE when I embarrass those Doctors! But they SHOULD understand! Even at my age, "fooling around" is still in the scheme of things! I NEVER thought, 20 years ago, that we would still be playing house NOW!!! Our Daughters, both grown, would be mortified! Don't tell them!And Yay!!!!! Okay I can still have my "White Russian"? Thank God for small favors! At least the 2% milk is GOOD for me!
And LAST night, I had this dream, where this guy's hair was just like macaroni! I mean Fettucini, specifically! The same color, just hanging down all over his head! WHAT is going on in MY head??? If I could just not dream when I am sleeping! Maybe WE should watch a movie before bed-time, Ha! xoxoxoxoxoxo
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I am relieved to hear that a drink will not put me over the edge physically. I had Ovarian cancer at the same time as breast and after 4 surgeries since March I am ready for some kind of normalcy. That is a nice cold beer with some breaded cheese curds. A treat for me!
I am going to ask a question that I have not been able to ask anyone. Since March I have not been able to have sex with my husband both physically and mentally. I had my last surgery 5 weeks ago and was told nothing for at least 5 more weeks. At the same time physically I have been ripped apart and am so afraid not to mention feeling like a freak. Will the Tomaxifen make a difference? Is there a website or a book anyone can recomend for me to read?
Thanks ~
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Luvlife, I think every prescription med out there comes with a warning about alcohol. I'm sure that they are just CYAing by putting this on any and every med bottle. My Onc says women with breast cancer history shouldn't drink at all because studies have found a connection with alcohol and breast cancer. I've cut down but will not give it up, I enjoy a drink at dinnertime too much. And I've increased my exercise and changed my diet to about 95% nonprocessed whole foods, which also has been found to decrease risk, so I feel like I've wiped out any alcohol risk factors.
And as far as sex life goes, I'm not sure what your exact physical problem is, but tamoxifen causes vaginal discharge. I've had no problem with dryness since I've been on it. Maybe a few drinks will help you overcome the mental block.
Laura, eager to hear what your Rad Onc says and how the arimidex works out for you. Unbelievable that your Onc reacted that way! I don't care who might be embarrassed by me bringing up my sex life at a doctor visit, but then again I am a Labor and Delivery nurse, so we discuss this kind of stuff all day long.
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Hi little luvlife! The gals are going, "Oh no, she's back!" they mean me!
I THINK the Tamoxifen should help you....You have been through an awful lot! You just have to have confidence in yourself.....And you need re-assurance that you are alright. I don't think you feel like anything....emotionally YET!!! Talk to your Doctors about this! I remember years ago, when my girls were real tiny, I did NOT have any desire to do ANYthing! I was just overwhelmed with being a Mommy, & I didn't want to be bothered....But I did it anyway. Those feelings went away, after awhile. You are probably over-whelmed with ALL of this cancer stuff! If you read my previous posts, I talk about ideas that might help you, get over this feeling! 5 weeks? Is that because of the ovarian cancer?
And you are NOT a freak! We can't ever feel like that! Even when these gals have double mastectomies! You need re-assurance that you are STILL a beautiful woman! Just take your time....You know, if you read books, anything by Jackie Collins should help "turn you on"..... She sounds like a real tramp sometimes, but fun to read. Best wishes, kiddo.....xoxoxoxoxo
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I Have been on it for about a year. I have lost 14 pounds. Could be I am eating healthier.
I have not had many side effects, just hotflashes mostly.
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Yea luvlife, don't be so hard on yourself- look at everything you've been through! And look at the name you chose, you're obviously a beautiful, happy person inside!! Your "love life" will get back to normal, don't be afraid to 1) talk to your hubby, 2) be gentle and ease back into it 3) mess around even if you're not going all the way- keep those fires burning!
Not to minimize the insecurity you are feeling tho, because it's really hard to look at yourself and see all the scars and not mourn how different you look (I mean, I'm referring to myself- but I understand completely!) We go thru sooo much, no one but another sister can truly understand.
Come here and talk to us as much as you need to. That's what we're here for. Don't feel like you're a freak tho, you're a beautiful warrior who is kicking cancer's a$$ all over the place- and winning!! Don't let the cancer steal your pleasure, you deserve to enjoy your sex life!! Even if you don't feel like you even want to right now, once you get back into it you will! Tell your hubby he needs to focus on caressing you and warming you up... I guarantee you he won't mind a bit! Even if it takes hours.
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LadyMadonna - beautifully put.
luvlife - Give yourself time. You have been through hell and back in a short time. I'm sure physically you are still worn out from all the surgery and chemo. It's totally normal and expected that you might be feeling less that fabulous. When my ovaries were shut off I turned into an emotional basketcase. Normally, very positive person but I was a mess. I cried every day on my way home from work. It's the hormones. Especially if you were pre-menopausal before your surgery. And it takes some time to get used to the physical changes in your body.
Regarding the sex, sounds like you need to wait a few more weeks to get an ok from your doctor? In the meanwhile, you should just talk to your hubby. I know men can get selfish sometimes, but he needs to understand how you are feeling physically and emotionally. You really have been through a lot. I'm sure your mind is everywhere but in the bedroom. I've had similar issues - would be glad to talk to you if you are interested, just send me a private message. I have neither boobs nor ovaries, however that does not make a woman. What makes a woman is the size of her heart and the shape of her soul. We have all walked similar paths, and are all here for you. Take care!
(((big hugs)))
Laura
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Thanks on the cold drink tip. Unfortunately I already drink most of my drinks room temp. I did realize after posting the only thing different these past two weeks was that I started taking Calcium....hummmm makes me wonder because Colace was working before that.
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Hey All:
For me, its a quality of life issue: I'm not giving up my wine. Hands down. Sure I should do this, I should do that. I should eat only non-processed foods, I should run marathons. It just overwhelms me. I try to stay emotionally/spiritually grounded, and everything in moderation. Some days I do worry that if I get sick again I will look back and regret my choices, but for now, if I'm going to survive these long days with Tamoxifen, I have to have at least once vice
KittyDog: Calcium will definitely stop you up! The one thing I did forget to mention was that my nutritionist also said that some women need to cut dairy completely out of their diet - that you can develop a lactose-intolerance (slight) that affects you that way. It can develop gradually also. The chemo might have caused an imbalance. I never could give up cheese (life = cheese), but I did cut a lot of dairy out also. Its linked to bc anyway most think. Hugs to you.. hang in there - I know how awful it is! It will get better. Exercise, too, even though its miserable when your body is stuffed with .... well, you know. But eventually it does help.
Regina
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To all the newbies, welcome! Although sorry you have to be here. To add to comments from the others, I've been on T for 10 months now with only minor side effects, most of which I forget about most of the time. Those that were worse did subside within 3 months, following what DiDel's doc described. So dive in and see how it is for you - it's impossible to know beforehand and there's a decent likelihood you'll be just fine on it. And if not, well you can talk to your doc about plan B.
CS
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Such beautiful words of wisdom and encouragement for each other on here... has me welling up with tears this am. I push all the feelings of inadequacy about the new me to the back of my head for the most part. But reading today made me realize I am not alone. We are still here just changed a bit. And I love what Lady Madonna wrote, yes we mourn what we used to be.... we must learn to love the new us whatever that may be.
Ok I'm going to go cry I think....
Hugs !
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Big ((((hugs)))) Alicia...
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Just got the results back from my CYP2D6 test on metabolizing the big T and the results were very good. I'm a high metabolizer, but am having very few SEs after being on it for over 4 months. I asked my onc for the test for my peace of mind. I wanted to know that it's worth pumping this stuff in my body every day. She doesn't typically do it, but says other places, including the Mayo Clinic, run the test routinely. I was having some mild hot flushes, constipation, and feeling much more emotional than usual, but those have all eased up the last couple of weeks. Thought this might be helpful for those new or considering. I know I've read some discussion of the idea that if you have few SEs, you're not a good metabolizer. Not necessarily true, ladies!
Also, I'm not giving up my alcohol either. I live a very healthy life -- diet, exercise, etc., but really enjoy that occasional beer or glass of wine. And then there's the monthly ritual of viewing the full moon accompanied by a small glass of Bailey's!
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Thanks Candy! This really is helpful, I've been worrying about whether I'm even getting any benefit- very little noticable difference on Tamox. I feel better!
My onc did the CYP2D6 test but I haven't seen her since and I haven't heard anything so I guess no news is good news.
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Moodiness can be part of Tamox? Am having a PMS kind of day. Have only been on Tamox since Oct 1st. But, the sadness I have today hit me like PMS even though I am definitely in chemo pause still. It would be nice to blame it on the Tamox
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JFV - I started Tamoxifen last Friday and so far my side effects are constipation and some warm flashes here and there - not sure if they are true "hot flashes". And I'm pretty moody as well - but not sure if that is T related, or due to lack of sleep.
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