Bottle o Tamoxifen
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Yes, bcincolorado - but MY gall bladder was removed 6 weeks before my BC diagnosis (a TERRIBLE year: March and May 09) but I am wondering if that might be why ONE of my liver enzymes is elevated...
C
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HI all! New to this board! Been on my Tamox for one month this week. I am having the hot flashes, but no different than when on chemo, and I haven't had any major joint pain. HOWEVER, I would take joint pain over what's happening in the hair area. The hair on my head is re-growing at what I would call a "normal" rate. BUT, I have HAIR, and I don't mean blonde, ALL OVER MY FACE. What the hell is happening? I've always had to have my brows and upper lip waxed, and sure I had a couple stray thick hairs in the chin, but this started near my ears and has slowly worked its way across and down my face. It's not light, either! It's dark hair! It's horrible! It's down my neck, too! They are fine, soft hairs (not the thick crazy chin hairs), but still very noticeable and really aren't helping me in the self-esteem area.
I mean, first I lose my tits, then I get "new ones" that aren't nearly what I'd hoped, my hairs falls out and I look like a damn alien, and NOW I look like a friggin monkey! Someone please tell me that it's temporary and will go away? If it isn't, then what can I do?
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Oh dear lord, you all are terrifying me! If men had a chance of ever having this happen to them the Drug Companies would perfect Tamoxifen with ZERO side effects!
I don't want a monkey face??!! Esp if i have NO hair on my head and am missing a right breast!
Serioulsy, i hate this more and more every day. I know it will get better and i will get through this but I can't keep myself locked up in my house for a year avoiding the public.
one month till my doc makes me start taking tamo....tic toc..
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I think the facial hair thing is more likely a late side effect of chemo rather than a side effect of tamoxifen. I know women in my chemo group complained about it who weren't on tamoxifen. The upside was that once it was shaved or wore off it didn't seem to come back.
I've been on tamoxifen for about 18 months. My SEs have been mild -- hot flashes (which I had before being perimenopausal and then having chemo shut my ovaries down) and some vaginal discharge. Someone a few pages back wondered about taking it twice a day -- that's how my onc prescribes it too. The pharmacist didn't think it would matter which way it was taken once you got a steady level in your bloodstream. I've had transient elevated liver enzymes for the past year. Is it the tamox? Is it my new strenuous exercise routine? Who knows. I did have an abdominal ultrasound to make sure my liver was ok, and everything looks normal. My onco wants me to switch to an AI, but I'm happy with the way things are now and really don't want to change and have to deal with a new set of SEs!
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Thanks, Revkat! That does ease my mind a bit. I'm scared to shave it off, but I can't run around like this!
I have elevated liver enzymes, and I had them before the Tamox. My liver is slightly enlarged as well, but the onc says these can all be effects of the chemotherapy. Sometimes they give you so many different drugs, I think it's hard for them to know what drug is causing WHAT SE!
Hopefully the facial hair will "wear off." Like I said, it isn't thick and coarse, but fine and soft, so maybe it's just temporary.
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I will be starting Tamoxifen soon and I am really scared. These SE's almost seem unbearable. Has anyone had a good experience on Tamoxifen? I realize it won't be great, but the joint pain and weight gain are not something I am looking forward to. I already need to lose weight and I have arthritis in my knees and spine as it is. Thanks to all of you though for posting your SE's, at least I have an idea what I am in for. Allison
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Besides hair on the face issues (which now I think are more from the chemo than the Tamox), I have had almost ZERO SE's. I have slight vaginal discharge, and the only reason I noticed it was because I had been "dry as a bone" throughout chemo. I have no muscles or joint/bone aches, and my hot flashes only wake me up once or twice a week and go away quickly. I'm not any more irritable than I was on chemo or before my diagnosis, even. I haven't had a period yet -- not since I started chemo in November 09, finished in March, started the Tamox in May -- still nothing -- not even spotting, and I'm not going to complain about that. I have had some slight cramping that felt like I was ovulating, but a period never came. I have no complaints so far about the Tamoxifen. It's keeping that cancer away, and that's great as far as I'm concerned! I am 34 and was premenopausal, so I think I would have noticed major "menopausal" SE's, and they just aren't there. Good luck!
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Hi! I am new to this thread as of today. Finished my radiation treatments yesterday morning and I am supposed to start taking the tamoxifen today. I am planning on taking it at night and see how it goes. Five years seems like such a long time right now. I have been reading all of the posts on this thread for several days now and appreciate all of the comments. I am so scared to start taking the tamox tonight but I realize everyone responds differently to it so there is no way of knowing what SE will occur, if any. I am grateful to have the support of the members on this thread to help me get through this part of the ride.
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Hi All you Newbies,
As Susie would say, "welcome to the tamoxi-train!" Not that any of us want to be here but here we are and we now need to make the best of it. Great support here - great virtual friends, who know/understand much of what you are going through - there always seems to be at least one person who does!
I think ALL of us looked at the bottle/package before popping the first pill - took me several days, for sure. But I had decided the benefits of this drug outweigh the negatives and I really do not want t recurrence of BC!!!!!
I have had few side effects - more the first few months until the drug leveled out in my body. I take it at night, usually with supper with my 2nd calcium and 2000mg of Vit D. In the morning, I take an anti-acid med (reduced in strength because of the T), calcium, glucosamine, low dose aspirin, multi vite (watch carefully - some of them contain soy - and all of us should be avoiding soy because of its phytoestrogenic properties, except for soy lecithin; it appears to be OK).
I have had night sweats and my chronic low back stiffness/pain still annoys me. I have not had weight gain, in fact, the first few months, I lost weight.
Now, I take big old T just like my daily aspirin. I am 8 months in already - yahoo! Only 4 years 3 1/2 months to go
Best of luck to you all
C
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I have also lost weight in my first month of taking the T. Hopefully it stays that way!
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Well said Caroline - those of us on the drug have actively decided that its benefits make it worth trying. To give hope to hopeful34 and n50karen and anyone else scared of it, I too have few side effects. On a day to day basis it's essentially a nonevent for me (6+ months in). Hopefully it stays that way. Hopefully it will be that way for each of you too. So, if you think the drug has benefit for you then I at least would encourage you to dive in and see how it goes. There's an even chance that you will feel fine!! And if you don't, you can explore alternatives (which include just stopping it).
I'm curious of other's thoughts about the fears we have of tamox. For example, some who've done an amazing job weathering chemo, which is generally much more destructive to the body, are fearful of tamoxifen. Maybe it's because of that prior experience? (the chemo was so bad that facing 5 yrs of "that" seems intolerable?) Or for those of us who didn't do chemo, some of us were scared of tamox too, when we take other stuff w/o a thought that have just as many possible complications- Tylenol, for instance, can poison your liver and kill you if you take even a small amount too much, but few worry about that. Is it because the docs have to tell us about all the possible SEs and that's all we hear? Is it because it's 5 years, and we only take Tylenol once in a while? Is it because we're already stressed out by the BC and body-altering surgery? Is it not so frightening for people who already have health issues for which they take regular meds (e.g., they already accept that they need some drug regularly and tamox is just one more)? Just curious what's making us tick. Thoughts anyone?
CS
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I have my bottle of Tamox but haven't opened it yet.
Still scared.I have a question that I'm sorry I have to ask, but... could someone define vaginal "discharge" for me?? What kind of discharge? Do mean blood, or...? And how much, exactly? e.g. am I going to have to carry pantiliners with me at all times, just in case? Could this vaginal "discharge" be cause for embarrassing moments in yoga class, e.g., if I'm not wearing a pantiliner?
The very thought of these side effects is just pissing me off today and making me not want to take it.
CS, for me, the reason I'm scared of the Tamoxifen is because I've always been very into alternative/natural healing methods and western medicine has always been my last resort and wasn't something I dealt with much at all until my BC dx. I've never been on a daily medication like this, other than a week or two of antibiotics a few times over the years as necessary. I hardly even take OTC pain relievers. I use vitamins, herbs, supplements, essential oils, homeopathic remedies, diet & lifestyle changes, etc., for nearly everything... and for years I've been downright OCD about not putting chemicals/fake things in my body (to the extent that I can control this - there are so many environmental toxins none of us can avoid). I use only natural shampoo/soap/toothpaste/sunblock/etc, never drink, smoke, or do drugs, don't wear makeup or perfume, don't eat meat, don't eat refined sugar, limit dairy and white flour, eat organic produce as much as possible, etc. Taking a powerful drug every day for 5 years scares the crap out of me - it's so foreign to how I've lived my life until now.
But then I think, my natural healing methods may have worked for things like asthma, occasional headaches, etc... but I've never before had something life-threatening like cancer. I've been seeing a naturopath monthly since dx and she has given me many natural strategies for managing SEs from the conventional treatments and ways of boosting my immune system, maintaining my excellent overall health, etc.... I have this constant argument with myself over which I'm MORE scared of: taking the Tamoxifen when I don't actually need it and having it screw up my health, or NOT taking the Tamoxifen and ending up with a recurrence. I honestly don't know. I'm going to just try the Tamoxifen, and see how it is, I guess. I'm going to log my SEs for 6 months and then decide if I feel the Tamox is worth continuing, or if it's affecting my quality of life too much to be worth it.
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The discharge for me anyway was a thick white mucous, similar to the kind you get around ovulation but thicker. I've been on tanox for over a year now and no longer have a discharge.
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For me the discharge is clear or whitish, and comes in cycles. I could go several weeks without it and then it shows up for several weeks. It's worse when I'm doing any kind of heavy workout. Usually I will put on a pantiliner when I'm having a lot of discharge and sometimes, I get a little gush for which I'm unprepared. Nothing that ever would show through though and sometimes I have to step into a bathroom and shove paper towels into my panties just to get rid of that sticky wet feeling. I look at it this way, it's better than the vaginal dryness that women on the AIs get.
Raili, I also don't like the idea of taking a med everyday for 5 years, especially something that is messing with my body's normal processes. I've always been healthy, and eat well, and felt that I can control what happens in my body, by maintaining good habits. So sometimes it really annoys me that I have to take this. I started out by telling myself, I'll do it for a year, and then when that passed, I said 18 months. and now I've decided to stay on it for 2 years and then reevaluate. So far, I've had no major problems, but the hot flashes can get annoying at times, they also seem to get better and worse in cycles. However, I have found natural remedies that help with them. I've had 2 transvaginal ultrasounds done and so far, no problems brewing in the reproductive organs, but if anything were to start showing up that I thought was due to the tamoxifen, for me this would be a reason to stop taking it, I wouldn't let the problem get worse and lead to unwanted GYN surgeries.
I didn't need chemo and the thought of that and all the effects it has on the body really terrify me, the tamoxifen is lightweight to me, compared to what chemo might have done to my system.
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I just use panti-liners to be safe. If you have a bloody discharge that is not a good sign and needs to be reported unless you are still having your monthly cycle.
Just keep in mind that all meds have side effects, even over the counter ones. This will help reduce your risk of getting cancer again. Seems worth it to me.
I'm on the train!
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Hi tamoxibeauties! I am doing my usual monthly drive by to check in and say hi to everyone
I read where so many of you are worried about taking that first pill of tamox. I was too, very scared and very worried, but, I finally took it and I am glad that I did. We need to do all that we can do fight the beast and tamox is just one more weapon in our arsenal.
I started off with bad headaches, but, after awhile, they became very manageable and less and less frequent. I pray that all of you will do very well on it.
I hope you all are enjoying this beautiful summer and planning some great vacations or get aways.
Take care all of you!
♥ Susie
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Raili & all, thanks for commenting on why/why not the fear of tamox. I too am one to avoid pharmaceuticals when I can, and eat vegetarian, but I'm not nearly as "natural" as you Raili. I'm trying to think back and I don't think I felt fear so much as just wanting to be convinced the benefits would be worth the risks. I waited about 10 days to start, to get through the Tx holiday first and to get a 2nd opinion on it from a 2nd onc. When she also said yes I should take it, and added "if it makes you miserable we can reevaluate", something clicked and I realized it wasn't irreversible (like the MX I had just come through) and I might as well give a try. So I dove in the next day and here I am 6.5 months later, on the tamoxi-train. For the first 5-6 months I worried about it a lot trying to figure out all I could about it and whether it is likely helping ME (as opposed to some % of women "like me"), and a few weeks ago I finally convinced myself that there is no way to know that for sure based on today's science, so I decided I would just stop obsessing about it. So that was my journey.
Goodnight all - CS
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Thanks ladies for all of your input. I WILL take it regardless, because I too had a BMX w/ TE's and it seems so silly to not take a pill after all that. I guess I am just being vain and don't want to gain thirty pounds. I am afraid the weight gain will cause a whole new set of problems. I am borderline diabetic and as I said before I have arthitis in my knees, so I hate the idea of being overweight and in pain.....don't get me wrong, I hate the idea of the BC returning far more, especially at my age (34), but I will just keep my fingers crossed and do alot of praying that the SE's will be minimal. Thanks again. Allison
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It has been a long time since I checked it...but i have a question...I have been on T for two months and lately I have started having heart palpitations. I have even gone to ER worried I was having a heart attack...It is stressing me out big time. I have had 2 ECGs and will have the 24 hour holster in a couple of weeks. Could this be my hormones? Has any one else had such a thing? My mind is suggesting the worst.
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Micheleboots, I don't know about the heart palpitations but probably someone else here can help you with that. It's good that you are following up and will do the 24 hour holster, a friend of mine did that recently (not on tamox) and it gave helpful info. For hopeful34 and others who are concerned about the SEs, I wanted to add that there are a lot of ways to deal with SEs if they show up. I've read how acupuncture helps relieve some SEs and a number of women have written that exercise took care of the extra weight gain. I had a similar experience as CS777 - when my onc suggested I try tamox and said if it's unbearable we could reevaluate, it helped me give it a try. CS7777, it's great that you stopped obsessing about it. For some reason I have this strong fear/sense/belief/I-don't-know-what-to-call-it that the tamox is not working and that I will have a recurrence. I think the lack of major SEs contribute to this fear but it's also that unfortunately I have always been a pessimist. I realize that there are other things to do aside from tamox to reduce my risk of recurrence but it's been hard for me to get motivated. I bought the Anticancer book but haven't read it yet. I know exercise has been shown to reduce the recurrence rate but I haven't done anything.
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I take medication for glaucoma (travatan) and for ADD (adderall.) It just hit me that it may interfere with the tamox. I tried to do a quick search but didn't find anything - I don't think they are studied to the same extent as the antidepressants, some of which interfere with tamox. I will continue to try to find something but I was wondering if anyone had any info? It takes energy and strength to deal with researching bc and I don't think I have it!
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OK, I remember reading about the dreaded peach fuzz and low and behold- I'm becoming a peach!!! I'm going to scream when I start finding the grey stray hairs on my chin- or better yet when someone else finds them for me.
The pharmaceutical companies usually run compatability studies with other meds that are commonly used in a particular disease state or age group. So not all medication combinations are tested during the clinical trials before FDA approval. More times than not, there is no info available. But if anyone is taking other medications and something feels not right, it's a good idea to not only tell your doctor but to also let the drug manaufacturer know. When they get enough reports, about a possible interaction, it raisies a red flag and they have to notify the FDA and put a warning on the package insert.
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Michele sorry to hear about your heart concerns. I too feel my heart palpitating at times but it's usually when I'm having a hot flash. Could that be the case with you?
On a personal note I got the results back from my D-Dimer blood test. It was negative for DVT.
Coincidentally the leg pain disappeared yesterday just before I got the results - go figure! Now I'm thinking that it might have been caused from muscle fatigue/strain - I was running around on Friday getting ready for a weekend away and then on my feet all day Saturday at a family event.
But I feel a lot better knowing the signs to look for and that if I have it again there is a test to determine if it is a blood clot or DVT.
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MarieK - Thank goodness it wasn't DVT. Yay for you. It's good you were cautious and had it checked though.
gulp - You probably have already but I'll second Waldo and remind you to always let every one of your docs know all the other drugs you're taking. Regarding tamoxifen, one of the major considerations for interactions has to do with whether another drug inhibits the enzymes that metabolize tamoxifen into what are believed to be its active metabolites. The major enzymes that metabolize tamox are Cyp2D6 and Cyp3A4; the problem antidepressants are strong inhibitors of Cyp2D6. I checked a big list of inhibitors of all these Cyp enzymes (see http://medicine.iupui.edu/clinpharm/ddis/table.asp) and neither of your drugs are on the list, so that is good. I looked for other information and still found nothing that says Adderall is a problem. Since it is essentially amphetamine which has been studied for a long time, if it was a major inhibitor my guess is it would be known. As for travatan, it is metabolized by a whole different set of enzymes (not the Cyp's at all) so it would be an unlikely problem, and I found no info of it inhibiting the enzymes. So, if you haven't checked with your all your doctors already you should, but in the meantime I hope this will help you at least not overly worry until you have the chance to check. That doesn't guarantee there can't be some other sort of interaction, but at least this should be some reassurance.
Regarding whether its working or not, given your stats in your history line remember that you're at a low risk of recurrance to start with! Small tumor, low grade, etc. So add tamoxifen on top of that and you're at even lower risk. Nothing is for certain obviously, but I think that's what gets me through the day. Hugs to you!!
Michele I wish I could say something insightful about your heart concerns but I'm unfamiliar with any connection to tamox. So I can only send many hugs to you too and hope that you can find a way to relax and not majorly stress over it. And hope that it works itself out as something inconsequential. Best to you!
CS
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When telling your doctor what you take, remember its Not just the prescription drugs you are taking but supplements too and over the counter stuff like asprain and cough syrup. Oh and certain types of herbal teas if you are hooked on a particular thing and take it every day. At least thats my understanding.
Is anyone on the tamoxi-train being treated for DCIS only who is post-menopausal? I just found that I am post-menopausal and am wondering how that will impact what I anticipated as a journey on the tamoxi-train.
Thanks!
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I am now post menopausal - according to the latest blood work.
My GP told me that 2/3 of estrogen comes from ovaries and 1/3 comes from liver, adrenals and breast tissue.
I've had 2 drs tell me recently that everyone ER+ is getting put on Tamoxifen including post-menopausal women!
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Wow - thanks CS7777 for looking up my medications! And thanks for explaining the enzyme issue. It does give me some reassurance, I really appreciate it. I'm pretty sure I told my oncologist about the medications, but I'll check again. The thing is, I like my oncologist but he really has very little to say about doing anything else to prevent a recurrence. Maybe I should see my regular internist for a visit, I haven't seen him since I was diagnosed with bc. I think part of my worry about a recurrence is that when I was diagnosed, I found out I had two unrelated cancers in each breast and then my oncotype score was higher than anticipated. Also I found out after my bilateral mastectomy that they couldn't get clear margins with the DCIS. I'm not doing chemo, my onc didn't recommend it, but I am in the middle range and it seems that many women with my oncotype # decide to do chemo. I'm not doing rads either, although some women in my situation (bmx without clear margins) do so. My surgeon didn't recommend it and I didn't get a second opinion. Sorry to vent here. The uncertainty can be so unsettling.
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gulp: I have low-tension glaucoma and take Xalatan drops to make my pressure lower and reduce risk for more damage to my optic nerve. I've seen my onco and optho since my dx and starting tamox and both said ok for that one.
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gulp - no apologies needed, venting is what we do here right? I do now better understand your concerns. The good thing is that since you had the BMX you have almost no breast tissue left to get a recurrance/new occurance in, so the main possiblity left is if something already spread, and you're taking the tamoxifen to smother that, sooooo........I know its no guarantee, but it seems like you're working hard agst this. Seeing your internist for general healthy living guidance as you said might help you feel better too, to give you more general things that would help you feel you're doing "all" you can. If you feel sort of on the fence about the radiation, and would feel more comfortable not doing it if you had a 2nd doc say no, then it's not too late to get 2nd opinion on it. I'm unsure who that person should be though...another surgeon or another med onc or a radiation oncologist? My feeling would be that any of them that is very BC-treatment centric (not a general surgeon) could be good. If on the other hand you feel its the right decision for you then that's that. You're about 3 months behind me in diagnosis and I will say that time itself seems to make some of this worry fade a bit, so give yourself some time and hopefully that will happen for you too. Hugs!!!
CS
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Gulp -
You are worried about NOT having side effects. One of the women on this site, who had massive hot flashes, found out she was a VERY poor metabolizer of T - so bad, she had to have her ovaries shut down and began on an aromatase inhibitor. She was shocked! as all the SEs indicated, she thought, T was working. So, there really is no way of knowing for sure if T is working (unless you have the endoxifen tested, which i don't think is available to the public yet)
Hang in there y'all.
C
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