Bottle o Tamoxifen
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Is there any new post on Tamoxifen ? I just started mine an it us really irritating my stomach. An the hott flashes an joint pain is bad already .
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trvler, yes I can. I have noticed it takes longer and he has to work more to get me "turned on" i use coconut oil for lubrication. But have also used other lubricants, my friend sells Pure Romance and gives me samples to try.
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I'll pipe on the Pure Romance. Find yo'self a dealer! The women who sale the products care about women's health and well being. Just because we had BC doesn't mean we have to give up a healthy sex life.
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Wondering if anyone has had constipation while on Tamoxifen? Thank you
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rgossen, Constipation is a fairly common SE with Tamoxifen. The advice of a rectal surgeon with whom I worked years ago is helping me--berries and a hot beverage (could be a glass of hot water) with breakfast. That and walking and drinking 2 liters of water each day. Good luck.
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Anyone else only make it 5 days on tamoxifen? I'm post-menopause but have osteoporosis at 51, the curse of small and pale, so obvious concern about more bone loss with aromatase inhibitors. Within 5 days of tamoxifen, pelvic area discomfort and copious discharge. I guess on to plan B, only there is no plan B.
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Rgoosen - if it gets bad look for a product called Cleansemore in the herbal section or herbal store - works fantastic!
Nat Blue - have you thought about trying a different brand of Tamoxifen? I had the pelvic discomfort with the last brand I was on, among other SEs and this new brand, while has its own SEs, they are not as bad as the previous brand.....yet.
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natblue, I asume all of your reproductive organs are intact?
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Yes, I have all my reproductive organs. I had many problems during peri-menopause, but went through a relatively early menopause, so I ended up keeping all my parts. Tamoxifen made me feel like I was back in peri-menopause which I assume is its estrogenic effect on the uterus. My obgyn calls it two bad choices, but she thinks the aromatase inhibitor might be a better choice. A hysterectomy is probably another choice, but it's more punishment on my body and tough to be off more when I live alone and must be the bread winner.
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What brands are people using where they experience fewer side effects?
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after 2 years of insomnia and trying everything under the sun to get sleep, finally found something to help. Elavil has me sleeping so good now!
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Nat blue, I found that the longer I was on tamox, some of the effects eased off. Constipation was a problem and what might feel like period cramps might, in fact, be constipation. I did battle that for several months but it seems to have resolved now. I also had increased discharge for several months but that also has resolved, but I think it's because my vagina is dead.
If tamox is a better choice for you because of bone issues, maybe consider easing yourself into it with lower doses. If your doc is honest he/she will admit that the BEST dosage was NEVER determined. Just the most tolerated dose. There are some tiny bits of evidence showing that lower dose tamox is just as effective. So this is something you might consider.
How strongly ER and PR are you? While I have not found conformational evidence of it, they say that the more ER and PR you are, the more profound the effects of tamox will be on your body (and on your cancer). This is cold comfort to know the pill is 'really working for you' as you have leg cramps, insomnia, hair falling out, growing a beard and your vagina shrivels up like a raisin. But hey ... let's hope this keeps the cancer at bay.
So before you quit tamox completely, tweak it. Your doctor will likely NOT give you the okay to do this because the book says to ake 20mg a day and most of them go by the book. For legal reasons, often not for sound medical reasons.
When I told my oncologist at our first annual meeting that I was taking HALF a dose most days and a full dose some days he outright said that the BEST dose was never, ever studied. That some studies now show intermittent use is just as effective as continuous use, and that taking some tamoxifen is better than no tamoxifen. I appreciate his honesty. So .. you do have options here but you are likely going to have to go rogue because your doctor might not think outside the box. Your life. Your choice.
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Hi Ladies
It has been a while few weeks since I last stopped by. Tamoxifen wasn't quite has bad. But now it is acting up again and of course not in the best of ways. I have been on T for 10 months now, and I think I just had my first hot flash. But the wired thing is that it has seem to been in conjunction with my period, so now can get hot along with having the normal period cramps. However the period cramps seem to be a everyday thing now since starting Tamoxifen. Oh Joy!
Was wondering if anyone else get hot flashes more often during their period? What is your best way to cool down? Ice packs have helped, but any other ides are welcomed!
Thanks for listening to my T vent.
Cheryl: sorry for the late response to answer your question about summer school I work at a all year round preschool so we don't really get a break. I work with 2-5 year olds. Not sure about summer school at other schools for the big kids. I hope you and your boys are enjoying your summer. Hope your side effects are too bad.
Wishing everyone a good day.
Hugs to all,
Sara
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After a blissful 5 week break I’ve started tamoxifen again. I’ve thought about taking half a dose each day, but these pills are really hard to split. Anyone do 20mg every other day
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I picked up my first prescription yesterday. I think I'm waiting until Aug 1 to start, making it an easy to remember date/schedule. Of course, that just gives me more time to dread the possibilities of SE! (I also picked up Biotin as I have skinny hair to start with. My MO didn't think it necessary but didn't object.)
Biggest surprise is that my MO, who is very well regarded, is telling me to continue with my buproprion prescription. He did agree to test my CYP2D6 to make sure I wasn't a low converter to start, but he explained that the buproprion (Wellbutrin) connection wasn't as strong as made out to be. I'm not so sure about this, anyone have any other input? I love my buproprion, not in the least because I dropped 10 pounds in the last year without thinking about it, but I also don't want to have Tam SEs without benefits!
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Wow runor - your comment "Staring at that pill, that boring white tablet, my destiny for the next 5 years, maybe 10, the one thing between me and more cancer, opening my mouth and swallowing that pill felt like giving in. It felt, to me, a little like admitting defeat. Yes, this is real. This was not a bad dream. This unbelievable shit really happened. I am not going to wake up from this. This pill signifies that all the badness is REAL." ----- this is exactly what I go through. I started Tamox more than a month ago and although I am happy i have filled up my Pill Box with lots of extra supplements than my usual, that one white pill haunts me. HOWEVER, i look at the pill box and say "the rest can be filled up with more prescription pills, but no, they are supplements to help keep me strong". I step back and I am grateful for that and I am learning mind and body are a great team. My range of emotions through this whole ordeal, including the anger of having to take a Pill, the little pangs of pain I am am getting in the Radiated Breast, the sensitivity to sun (ALL REMINDERS) and then the Pill causing some emotional ups and downs (hormones just suck!) has made it hard, but I'm trying to control it and make it more positive. Positive mind I think helps for a positive body. And true belief that this damn little white pill will do its magic and protect me. In the meanwhile, i hope the little side effects balance out while my body gets used to taking it!!!
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VL22 I have a little pill spliiter thingy and it works like crap. It's a pain in the butt to open the top, position the pill just right, squeeze it shut. To hell with that! I put my cutting board on the kitchen table, get my big knife out that I carve the Christmas turkey with (okay, prime rib, not turkey, who am I kidding?) set a pill on the board, get the knife lined up over the little slice mark and, with my free hand covering the operation, I slowly press the blade down into the pill. Boink! Splits apart. Most of the time it splits pretty well. Sometimes a bigger junk or littler chunk. Whatever. I scrape them all into a bottle and use them to refill my daily pill holder jobby.
I don't think the point is to get EXACTLY 10 mg every day. The point (from my perspective) is to get a certain level of tamoxifen in my body and keep it there and from everything I've read, taking anything over 5 mg a day will do that. Even if you mangle a pill you're still getting at least 5 mg a day. And then you'll get more the next day. It averages out to 10 mg a day. And just to play it safe, twice a week I take a full 20 mg dose. Sunday and Wednesday.
If I shatter a pill to mush, I toss it and carry on. I sit and split once every 6 weeks or so. Do a whack and have them on hand. I might be gambling with my life but the truth is that no one can tell me for sure if I am or not. The research was never, ever done.
Twinsmama ... I think we all catch our breath the first time we swallow that pill. I am almost a year in, I started Aug 1, 2017 and while the effects are still here, they are not debilitating. Soon I will be bald and have a beard to rival Hub's... but I get through my days without tamoxifen being the main thing on my mind. It was harder getting cancer off my mind and feeling hopeful again. But the light came. I do have some moments of pure joy and peace. Last year I was away from home for a month having radiation and missed the best of garden season. This year I have marvelled in my flowers and berries and fabulous red tomatoes - and I feel real, solid joy in the simple little things that are actually miracles with leaves. Slowly, slowly, the light you used to know will find you again. When you aren't expecting it. It flits in like a butterfly and you'll catch yourself being surprised and happy. One moment at a time.
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Today is my 28th day on Tamoxifen. My scalp is really itchy, does anyone else have that side effect? Would it mean my hair would fall out. What can be done to preserve hair?
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rumor
Are you trying to take over my job with that cheery talk about light and butterlies:)
Signed,
totally bald likely forever Scrafgal
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veeder- it took me a while to figure out why, but yes, itchy scalp. After trial and error I found that switching to a heavy conditioner and leaving it in for a bit before rinsing to moisturize my scalp solved the problem. Makes sense since Tamoxifen dries out everything it would do the same to our scalp. I went from using no conditioner to this thick coconut stuff
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I’m doing really well taking tamoxifen on sun, tues, thurs, and sat. With my MO blessing!!! Liver counts down and not feeling like crap all the time. 25 mg dose of elavil at night has me sleeping like a baby after two years of insomnia from he$$!!!
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I don't often post on here, because I mostly don't have any problems on tamoxifen.. But yesterday I went for a routine eye check, and have come away with a referral to an opthalmology specialist for suspected tamoxifen toxicity. I hadn't noticed any change in my eyesight, but one eye has really deteriorated. So the optician put drops in my eyes to inspect the back of my eye, and said I had pigment changes to the macular which look like tamoxifen toxicity. I didn't even know tamoxifen could damage the macula, I knew there was a higher risk of cataracts, but they're pretty fixable, so I never gave it another thought. But searching on the internet is showing all sorts of studies, the scary thing is that some are saying the changes are permanent. Whatever has caused it, my sight in that eye is a lot worse and so is my colour vision.
Has anyone else had any sight issues with tamoxifen, I'm trying not to get too anxious over this, but it is concerning.
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dizzybee- That’s awful! Add that to the list of things no one warns us about! So sorry you have to deal with this. I’ve never even heard of Tamoxifen toxicity. Best not to trust everything we find on the internet and at least hope there is something they can do to fix it, at least until you know otherwise. When is your appointment with the specialist? Does your MO know yet, and have they recommended stopping Tamoxifen?
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Thanks Cpeachymom,
I'll try Conditioner as I haven't used it in the past except occasionally.
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I'll wait to see what the consultant says, he may have a different opinion I guess. And if this isn't tamoxifen toxicity then there's no need to stop it. I don't have an appointment yet, this only happened yesterday afternoon. But whatever the outcome, it's made me look at that pill in a different way.
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Dizzybee, yes, changes in the macula are a known potential side effect of Tamoxifen-- information which was included in that given me during the decision making process about which hormone blocker to take. Since my maculae are already roughed up from being extremely near sighted, I talked with my ophthalmologist about it. He gave me the full go ahead because he said in all his years of practice he has not seen macular changes from Tamoxifen. That is not to say you do not have such changes from Tamoxifen but that they are not among the more common SEs-- perhaps why others were not aware of the possibility.
Best wishes for you on your follow-up on this and may you be able to see a consultant very soon if for nothing else than getting more information. I take a special vitamin formula for macular degeneration called Preservision. It was developed for age related macular degeneration but my ophthalmologist suggested I try it even though my changes are more due to structure than aging...Will be thinking of you.
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Scrafgal, I would NEVER take over your butterfly position!
Veeder, my scalp is also itchy and my vacuum bag is full of my hair. The lint trap in the dryer is full of my hair. The seat of my truck is covered with my hair. Everything we eat comes with a side order of hair. So itchy. So fally outy.
Dizzybee, I also have had astounding visual loss. Yesterday in the drugstore I actually asked the stock girl to read some package instructions to me. I can't see those little letters! Used to be able to read the tiniest printing. Now? It's all a blur. I could eat a cockroach that was crawling around my plate and not even see it. Dinner is a blur. This visual loss started years ago but in the past year the deterioration has been so much worse! I suppose I should get my eyes checked. I have cheater glasses in every room of the house! I hope you can get a definitve answer on if this is age related or tamoxifen related.
Lovinggrouches ... good for you and your doc for tweaking the plan. Glad that it makes a difference to how you feel. I wish more docs would offer their patients and more flexible plan than 20mg a day, come hell or high water. I think some women quit in frustration and that might have been prevented if a doc was more creative and flexible.
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Ok ladies- I have no SE real SE from the Tamoxifen but I have had huge vision changes to! I have taken Tamoxifen for roughly 14 months and I now need readers for just about everything that requires me to read. If it's a dark print I do ok of its not to small but the sensitivity to light is off the hook! I always have my sunglasses on. I can hardly open my eyes if I'm outdoors without them on. I asked my oncologist about the Tamoxifen being the possible cause because I had read that it can make changes in my vision. I was told no it doesn't. Things that make you go hummmm
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Vargadoll, things that make you make an appointment to get your eyes/vision checked????
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Hi Everyone,
I met with a PS yesterday to discuss breast reconstruction he said I would need to stop taking tamoxifen 1 month prior to having the flap surgery. Has anyone else gone off Tamoxifen for that long before having surgery? My MO told me that I should stop taking T a week before surgery. I don't feel good about stopping it for that long. I think of Tamoxifen as my security blanket against the bad cancer monster under my bed.
Thanks for listening
Hugs to all,
Sara
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