Bottle o Tamoxifen
Comments
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Hi linker12: I know for a lot of women taking that first pill is difficult. I think it is because we know it will be for a LONG time....or are worried about side effects.
Just try to remember that any side effects of being on Tamoxifen are better than the side effects of recurrent (or a new) cancer. It might help taking that first dose easier for you.
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linker, I hear ya!! I, too, put the Tamoxifen off for a long time... just kept dragging my feet. Cried through the whole oncology appt when she gave me the prescription.
But I'm happy to report, I've been taking Tamoxifen for over a month now and haven't had any side effects at all! Not even a hot flash! Maybe it will be the same for you.
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linker12, welcome! I've been taking tamox and don't have any side effects. Well, in the beginning I had night sweats, but those went away. And now and then I get leg and foot cramps. And also in the beginning I was constipated. But that too went away. And that's basically it. I was very upset about having to take tamox and also put it off. But now it's just part of my morning ritual, it doesn't bother me anymore. I hope it goes smoothly for you....there's a lot of support here. I don't post that often but I can tell you the women here are extremely helpful in many ways.
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Time is ticking for me as well...scheduled to take my first T pill tomorrow. I've been having achy joints in my ankles and hips for me it's definitely not T since i haven't started it yet. My doc also swears it doesn't cause joint pain. I was thinking that it is yet another lovely delayed SE of Taxotere. I didn't want to take it either but mainly because i hate taking drugs. BUT the benefit outweighs the SE for sure!!!
Is it better to take T at night or morning?? Anyone have an opinion
Diane
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Thank you all for the encouragement, it feels good to talk to others in the same boat. I'll post when I actually take the darn thing....looks like Monday. I'll be interested to hear how things go for you, Didel!
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DiDel - when to take your Tamoxifen?
I think that depends on your individual routine.
I've been on since April and initially I tried to take it at night. I thought it would be best to sleep through some of the side effects.
But that didn't work for me because I kept forgetting to take it - I'd be too tired and go straight to bed!
I'm a night owl and my hubby goes to bed early. So I get into my pjs and take off my makeup/brush my teeth before he falls asleep and then go watch tv and do laundry late into the night.
Now I take mine in the morning because I have a set routine and get up around the same time every morning. I haven't forgotten a pill since I switched to the morning!
Although it did give me a headache for the first few hours after I took it and I did get a lot of hot flashes during the day (but that could have been the chemo-induced menopause). Both of these seem to have subsided lately.
Good luck with it!
Marie
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I just wanted to add that I too was VERY hesitant about taking Tamoxifen at first.
I looked into having an OOPH as an alternative to taking Tamoxifen but then found out a) that I would still have to take some kind of drug for the next few years and b) my ovaries were not producing estrogen.
YES I would have gladly had another surgery just to avoid taking this darn pill for 5 years!
But that was all before I started taking it....
After the first few months the side effects - headaches, night sweats/flashing, leg/foot cramps - seemed to go away and like Gulp said it's just part of the morning ritual now!
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Thanks Marie, I was thinking morning would be best for me too based on my routine. I too am a night owl and I am taking all these vitamins and supplements so I am gonna try morning. I was gonna start today but I now has a skin infection (I hope that's all it is) and am taking antibiotics and have to go to docs tomorrow. So I will see what he says and start on Monday based on how my appt goes. UGH!
Diane
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My Dr. thinks the SE are not as bad taken 10mg in the morning and then the other 10mg at bedtime. I started it Tuesday night...so far so good.
How can your oncologist say it doesn't cause bone or muscle pain. It is the second side effect listed on my pharmacy print out. lol Hot Flashes is first.
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Come on girls....It'll be alright! DiDel & Linker....I know how you feel, But.....I ASKED for Tamoxifen, over Arimidex and Femara....I'm going for the Cyp2d6 test tomorrow, to see if I am metabolizing it....I have been taking it for 7 months, & really no side-effects! I'm a lot older than a lot of you gals, so my Oncologist wants me to take Femara...but I have found every excuse NOT to! I talk to a lot of women, and read these links a lot, about ALL of them, and believe me, Tamoxifen is soooooo much easier to take...I mean for the side effects! My friend took it for 5 years & that was 10 years ago! I also know that the cyp2d6 test isn't conclusive...that you might get the same benefits being a poor metabolizer, as a good metabolizer! I want to think that I am a good metabolizer, because I don't want to take Femara! And you know, I don't think there is any way to tell how good it is working.....I guess if we don't get cancer again, then we can thank the Tamoxifen....at least that's what my little pea-brain likes to think!
So don't be afraid....we have plenty other things that will scare the pants off of us, besides the Tamoxifen.
I take it early in the morning, with a little snack....with my coffee, & it kind of makes me happy, cause I think I'm not going to get cancer again! xoxoxoxoxo I found this sweet Pix for you!
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Hi Lonker - none of us WANT to take T - we just know it is the gold standard med for reducing recurrance..... (I'm 9 1/2 months in)
AND the sooner you get started, the sooner you'll be finished ;-)
C
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Hey - a new question - - -
Has anyone noticed they have allergies since they started T? I thought it was just a strange occurrence when my sinuses got totally plugged when I was exposed to smoke from a massive beach fire in March (I have never been allergic to anything except bandage tape in my life.).
But it happened again a few nights ago after a beach fire on our beach - roasting marshmallows. It will truly suck if it is related to T
C
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No, bcamnb.... You can almost bet that it isn't the Tamoxifen! After there was a fire up in the Mountains here, I got so sick with an asthma attack...We were miles away, but the smoke triggered a bad one! Smoke, no matter where it comes from is really bad for you! When I smell smoke, I start using Advair...just in case! Just sit away from the smoke, when outdoors! But roasting marshmellows...you mean with Hershey Bars & Graham Crackers? That's almost WORTH it, Ha!0
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Just a quick note to reinforce the points gulp and others made about tamoxifen being quite reasonable to tolerate for many people. I'm another with minimal side effects. Had some nausea, headaches, stomachaches and fatigue the first couple of months, then those quited down. I know I have some minor things going on still but they're so minor that on a day to day basis I'd say "nope, no side effects." So for everyone with uncertainty, just dive in and see how it goes. As for when is best time to take it, to start with the best time will be when you can remember it. Then, if you have bad side effects you might try changing the time or splitting it into 2 doses but if not then just keep it when you'll remember it. For me that's in the morning after breakfast with my vitamins.
Chevy good luck with the metab test tomorrow. HOpe it's whatever you want it to be!
CS
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The encouragment here to the newbie tamoxibabes is wonderful !!! It is what got me through swallowing that first bill. The good outweigh the bad on this pill for me ~ So I pop it each evening. That works best for me. It is on my nightstand when I get in bed I take my pill. I am a bit stiff when I wake up who knows if that is from the chemo I had or the tamoxifen. All in all my side effects are minimal. A hot flash now and then, a leg cramp and some joint stiffness.
You can do it girls ! Have a good day all !
Alicia0 -
Because I hated the idea of Tamoxifen so much, I made taking it into a really nice morning ritual:
First thing when I wake up, I put the coffee on to brew. Then I go to sit in the "meditation corner" of my bedroom, by the window, to look outside and greet the new day. I take the stupid Tamoxifen pill, and then I say my morning prayer/metta meditation:
May I be safe and protected.
May I be healthy and well.
May I be happy.
May I know peace.
May all beings be safe and protected.
May all beings be healthy and well.
May all beings be free of suffering
May all beings know happiness and peace.
While I'm doing that, I gently massage my SNB and lumpectomy scars with "Scar Solution" herbal salve - it's an olive oil base and contains calendula, st. john's wort, vitamin E, hosehip oil, lavender, etc., for healing.
I sit and breathe deeply for a few moments, and then I'm ready for the day. And by the end of this brief ritual, my coffee is ready.
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Wow I am impressed Raili! What a nice ritual. Is that a lovingkindness meditation? I am always saying I want to start meditating but haven't done it. What a positive way to begin the day and take the !&(#*@ pill!
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Raili, That's really lovely. How nice to take that time for yourself. The ritual itself would be healing, regardless of the T pill--hopefully the two will synergize!
At the risk of raining on a parade I will mention, in case you weren't reading on the board when this came up a few weeks ago, that lavendar oil has been found to be estrogenic and cause ER+ BC cells to grow in the lab and to cause breast formation in young boys when they used it on their skin. Tea tree oil was also implicated. Totally up to you whether you want to modify the oils in your scar salve but I thought you might want to know. The research data can be found here if you're interested: http://content.nejm.org/cgi/content/full/356/5/479
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Hello all ~
I'm new to this thread and hope to get some advise from you all. I've been on Tamox since June 1. About 2 weeks ago, I developed a rash and MAJOR itch on my right arm. I thought it may have been associated with me stopping my allergy medication recently so I started back on that. A week later, the itch and rash were still there and seemed to be getting worse. I saw my oncologist last Wednesday and she casually said "well, your going to have to stop taking the tamox" to see if this is what's doing it. She said go off of the tamox for at least a few weeks, see if the rash goes away and then wait a little while and start back on the tamox. If it comes back, we know the culprit. If it doesn't, then it was a reaction to something else. So, great! I was dreading the thought of taking this drug and possible hot flashes and all the other nasty business related to it. I have no other problems but end up with an itch that I have scratched until my arm is bleeding.
Immediately following my mx and reconstruction, my oncologist counseled me and said that it was my decision on whether to take the tamox. She explained that the chances of reoccurrence was low and since tamox only reducing your chances by 50%, I would have to out-weigh the risks vs benefits. I decided that I needed to do everything I could to assist in preventing a reoccurrence. I would take a pill every day for 5 years and if I didn't have a reoccurrence, great. If I did, then I know that I did everything I could. If I can't take the stuff because of these rashes, I am now faced with the possibility of not having control over keeping this nasty cancer at bay and doing all I can do to prevent a reoccurrence. I hate this feeling.
I guess I don't really know what I am asking you ladies for other than maybe some advise. Has anyone experienced this? Is there any other option out there? Doc says no because I am pre-menopausal and tamox is the only option. I am recovering really well from surgery and am getting back to a life of not thinking about cancer every minute of every day. Do I just suck it up and live without the tamox? Pray alot? Any thoughts would be so appreciated. My doc is great but she's just so casual about it.
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Hi Beaglesmom, For a discussion of possible alternatives to tamoxifen see p. 260 of this same thread. I outlined alternatives in a post on May 27, 10:34 am, and others posted other info and opinions both above and below that. I don't have time to rewrite it all here, sorry. As for the rash itself, it seems like stopping the tamox for a few weeks would be a way to at least see if its the problem. If its not then you don't have to even worry about this question (whether or not you get/must take the tamox for 5 yrs). If it is then the question of your alternatives comes into play. There are some - see p. 260. See also the BCO pages about the various SERMs. Tamoxifen is not the only SERM, although its got the most data on it for adjuvent therapy for premenopausal women. In a comparison, I will say that the skin on my hands definitely got dryer after I started and I have to really moisturize a lot so the skin doesn't crack and peel. My point is just that good skin care is a must. I would also note that allergy season this year has been terrible, and my allergy med hasn't worked great this year, so yours still could be allergy even if your med isn't great. Perhaps try an alternative? A friend from here (northern Cal) traveled to North Carolina a couple months ago and her allergies went so crazy her whole face broke out in a red itchy rash. Luckily she was able to leave and come back here. It's just anecdotal but sounds so similar to your skin thing. Best wishes to you figuring this out!!
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bcamnb - I too think that Tamoxifen is the culprit for my sinus trouble and stuffy nose.
I spoke to my doctor about it and he said that it does increase discharge in other parts of the body so why not sinus as well.
Since taking Tamoxifen I am very juicy in my lady parts - at first I had a green discharge but that went away. At my recent PAP I shot the spectulum out across the room. Luckily the dr was finished taking the swab!
I know TMI (too much information!) but considering I am post menopausal now and should be drying out I'm happy to say I'm not.
Although I could use a break from the snot...
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Raili sounds like a very nice morning ritual.
Beaglesmom, Welcome aboard. Sorry you are having a hard time. Tamoxifen is my only option as well. I am also trying to avoid estrogen in foods etc. Somone on another thread recommended the Anti Estrogen Diet book which I just ordered off amazon. You could also medically shut down your ovaries for a bit. Maybe your body is reacting to something other than the Tamoxifen maybe you can take a break for a while and try again later. Sorry I don't know what else to say. You'll find lots of support here. Glad you found us.
Thanks to all for your insight! I think I will begin my morning ritual tomorrow. My doctors appt went just fine this morning and my rx won't interfer with the T. I'm trying to get my buttt out for a morning run, so maybe T will be with my coffee after my run before my crazy work day begins. That way it almost seems like a pleasant way to start the day. You're all right as well I must remind myself of the importance of the pill and all the good it will bring. I'm not really afraid to take it anymore, just getting hard to choke down all the supplements, antibiotics, anti inflammatory pills and now T. At least its small.
Have a lovely evening everyone!!
Diane
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Hi Beaglesmom! Sometimes we get these side effects like you mentioned, & they last for a few weeks, & then hopefully go away. For my skin, I take Fish oil w/Omega 3....also Glucosamine, A multi-vitamin, Calcium & Vitamin D3.....I take a lo-dose aspirin with the Tamoxifen. I have ALWAYS had trouble with my skin...but the Tamoxifen has not had any effect on that. Could you try it for about a month or two....???? Did the rash go away when you quit taking it? If I have seasonal allergies, I take an Allegra in the mornings!
I have this "terminal" mind-altering rash on my one leg...It's called Stasis Dermatitis...& it's enough to drive you absolutely nuts, with the itching! But I researched it, found out what helps, & I'll continue to take care of this, probably as long as I live...Ha! I even wear compression stockings when it flares up. But I would be afraid NOT to take the Tamoxifen. I feel that's the one thing I can do to keep any cancer away.....as I'm sure we all are. I'm so old, the Oncologist wants me to take Femara, but I'm so far, afraid of THAT one, because of all the horrible joint pain, & SE's......I just took the cyp2d6 test, so I'll find out what is going on....
And I KNOW Diane! Taking all the supplements is much harder than taking the T. Pill! I just took mine, sitting here, with the lo-dose aspirin, & having a nice cup of coffee, & talking to you gals! I also eat a little hummus with a couple chips...the chips I put in this little sea-shell! I pamper myself, ha! But I guess it IS a ritual! I'm just at the point that I hope the T pill is working & that I CAN stay on it for 4 1/2 more years!
CS7777777777777
knows a lot about meds & combinations & stuff like that! So you can ask anything here.....We are very diverse here!.....But all together because of one thing......
And I love you all! xoxoxoxoxo
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Hey All today was the day!! I tried to make it a lovely fun morning ritual BUT IT'S SO HOT OUTSIDE!
I woke up at 7 am (which is early for me...VERY early) and I started to gather my workout clothes to go for a run, but first I had to take my recycling out WHEEEEEWWW was it hot. I quickly laid back in bed in front of the fan to cool down from my long haul to the curb and I fell back to sleep for 3 hours!! Yep, thank goodness I work for myself. I woke up made my coffee and emptied my pill box for Tuesday into my hand and down it went...PILL #1 done!! I had no emotions no problems got in the shower and went about my day. I did think of all of you as my day went on. I don't think I could get through this experience without everyones support so THANK YOU ALL!! Today was actually a good day! Good night all...sweeeeet dreams!
Diane
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WELCOME officially, Diane. We are all with you!!!
C
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Hi all, I have been away for a while and haven't been on the computer. Thanks for all your replies re the joint pain. I take Mobicox for the osteoarthritis that I have so I thought that it would help with the pain in my knee, wrong. I have also taken Advil and Tylenol 3 and it seems like the only place that doesn't get relief is the knee.
The wierdest thing happened though, I went to New York last week and don't you know my knee didn't hurt at all when I was there, the pain has actually eased up a bit, it only starts to hurt when I sit to long. I also take Glucosomine and Chondroitin, Fish oil and Calcium supplements, so I would think with all of that I should get some relief.
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Welcome Diane! The first pill's the hardest. LOL about going back to bed yesterday!!!
Tarry1, I wonder if you didn't provide your own answer about your knee..."it only starts to hurt with I sit too long"??? Maybe you can find a way to make sure you get up at intervals and walk around for a bit, like setting a timer on your phone or using a kitchen timer. Just a thought.
Speaking of forgetting pills, I just realized I didn't take mine this a.m. Had a physical at 8 am and couldn't eat before, and forgot after until now. Will go take it and my vitey's now. See y'all!
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I started Tamoxifen last summer. After 3 months went off, thinking it was the cause of allergic rashes, hives, lip swellings, etc. Stayed off until this spring when I went back on it because my periods started back up. After 6 weeks of terrible leg cramps and getting no sleep, itchy vagina, I stoped taking it again. Now my onco is recommending ovarian suppression. Has anyone else here tried that? How long do you do that for? My mom didn't go into menopause until age 60+...that means I probably have at least another 10+ years of menstruation.
I just don't get it. If the majority of women who get bc are post menopausal, how can menstruating be the big culprit? Those women haven't been producing estrogen for years, so is it just that their particular bc didn't get diagnosed until later in life and during their menstruating years they were producing too much of it?? In those cases I just don't understand the theory on blocking an estrogen (with A I's) they are barely producing any anymore. What are the side effects of ovarian supression? I just can't live with day to day side effects like Tamoxifen brought on for 5 years. Can't do it. Not that I didn't try. My onco told me the actual Tamoxifen benefit was only a 3% reduction in recurrence, not 50%. That's after chemo and mx. Maybe if I hadn't done those other things Tamoxifen would have offered the 50% one post claimed here. Maybe someone here can clear up the discrepancy?
I'm clearly confused about all of this!
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I just started Tamoxifen July 16th...and that first pill was scary. I am post-menopause and the thought of more hot flashes, etc...was not a welcome thought. But getting rid of this cancer outweighs the hot flashes for me. I take mine with my morning meds and found I have to eat or they make me queasy. I like the idea of a morning ritual...any way to ease my nerves with all of this would be great. I hear so many people (not on this wonderful site) say that DCIS is no big deal...but it is and it is scary. I lost my mother to BC so any cancer is scary and my brother found out a week prior to my Dx, that he has esophageal cancer stage 2.
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KorynH - my onc. said there was a 50% benefit when taking Tamox also.
Apparently I'll be getting my script for Tamox this Friday when I see my Onc. Praying that I am one of the women who have few se's.
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