Bottle o Tamoxifen
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Well said, Runor!
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runor ~ there isn't much about the journey we are all on to make us smile, but your post had me giggling. I am sorry you are having those terrible SEs but thanks for the smile this morning.
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Runor you have such a way with words!
I haven't got to issues with my vagina yet, also currently not in a relationship so not so pressing. But. I had had a hormonal IUD for about 2011-2015 and loved it, and just got a new one in on the same day the gyn found my cancer lump. My medical team were wild for me to remove it, because 'exogenous hormones,' but I really really wanted to keep it. I love the peace of mind and no/light periods. Eventually the MO spoke with a gyn oncologist, who confirmed no extra risk of blood clots, and she admitted that they don't have specific studies on how the IUD (which is low dose mostly local progesterone) impacts ER+/PR+ cancer. She was coming from a place of standards of care and an abundance of caution. She couldn't approve of me keeping it, but she documented warning me about the risks and dropped the subject.
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Hi All, I'm sorry for those you dealing with SE's and worrying about tamoxifen longterm. At this point I myself am getting really sick of all the bad choices we are faced with...
I was in March chemo group and Nov rads. Started tamoxifen beginning of Dec. Unfortunately I started spotting this week after 7 months of no periods which they assumed to be menopause. They said at my age (50) chemo would put me in permanent menopause. So now MO told me to stop taking tamoxifen until they can do various tests at my gyn appt on 1/10. I'm not really worried that they'll find something alarming since the spotting stopped literally day after I stopped taking the med. Thinking I'm just one of those cases where it affected endometrial lining very quickly. Also noticed a lot more discharge that was clear right after I first started taking it. This really didn't bother me since I was more worried about dryness and sexual side effects from menopause. Sorry if this is TMI. I'm just bummed because I really don't want to take an aromatase inhibitor and have like no estrogen in my body. I was really ok with taking the tamoxifen, now IDK, anyone heard of this?
PS I've been taking magnesium at night for quite a while to deal with muscle issues and it seems to really help, but I've noticed I have to take it very regularly for the benefits.
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today we went to my favorite waterfall and trekking through the rainforest ( something I used to do prior my diagnosis often, I totally felt collapsed after 15 mins, I couldn’t take the steps uphill, my knees and ankles were killing me, and sad part my 5 year old son told me” mom why are tou walking like grandma???” Thanks tamoxifen for 30 extra pounds and terrible joints pain at age 39🤨🤪0 -
I am on my 5th month of taking Tamoxifen. The first 3 were from the manufacturer Actavis, I had minimal SEs. Then when I went to refill the RX I got a different manufacturer, Teva, I am gaining weight and achy. This sucks. I need to talk to my oncologist about this and request the pills from the other manufacturer or just plain put me on the brand name Nolvadex and not the generic pills. Plus I have an odor when I go to the bathroom that I didn't have with the pills from Actavis.
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I got a prescription for the brand name and took it to the pharmacy. The pharmacist said it doesn't exist, only generics are available.
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Thanks Vedeer. I wonder why only the generic. They should have had the brand name.
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I think it's because the medication is so old, its been on the market for 40-50 years. The brand name medications seems to change to generics pretty quickly these days. Insurances don't want to pay for brand name meds that are more expensive unless there's a specific reason.
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Veeder, I think you are right. There is more than one manufacturer of generic Tamoxifen on the market (I'm on a third one and trying to decide if the increased joint pain is seasonal or this manufacturer) so why would insurance pay for brand name? If insurance won't pay it is likely sales would not be enough to continue providing the brand name.
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https://www.ncbi.nlm.nih.gov/pubmed/27428472
Yeah you're right. Too expensive to make. But here in this study says
CONCLUSION:
Severe tamoxifen side effects are commonly experienced by breast cancer patients and can be significantly altered by change in tamoxifen brand. Most patients will continue to take tamoxifen, despite side effects to avoid cancer relapse. Supplementation and antidepressants did not improve tamoxifen related side effects in our cohort.
So we aren't all crazy into thinking that the brand is the difference in SEs. I hope I can get mine that I liked when I refill my RX again.
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Can our oncologists request a certain manufacturer on the generics?
My first 90 days of tamoxifen was from Mylan and I had no side effects. I just refilled it and the bottles are different, pills are different and it says Zydus on the label. Only been taking the Zydus for two days and I am nervous.
Leg cramps scare me the worst, so I have been taking magnesium ever since I started taking it.
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WigLButtz, I am hoping so. I see my oncologist in a couple of months to see if that is possible, plus I am going to try to ask the pharmacist to see if they will carry it for me. The one I liked was Actavis. My first 90 days too were pretty much no SEs and now on the new refill I have more aches and pains, gaining weight and I have an odor to myself. This totally sucks.
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How many of you ladies have significant hair loss after starting Tamoxifen? I called the breast center and they suggested suspending Tamoxifen for a month to see if it decreases. I wonder if I should cut the dose instead?
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I used to have ridiculously thick hair. Not anymore. I have vacuumed up most of it and the rest has gone down the drain in the bathtub. It's all over the house, it's in all our food. Even my hairdresser made a comment. Hub and I have receding hairlines at the same time. You are not alone in significant hair loss.
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I have had she significant shedding this year but I also reallize that annual shedding is normal and given that I lost all my hair at once and that it all started growing back at the same time, that shedding is never going to be 'normal' again. Like Runor my hair ore chemo was thick and full, the thickest the hair dresser had ever seen. I couldn't put it I a bun because the was so much and control was by multiple scrunchies and elastics. Now it's thin, I have bald spots and because the annual shed affects the entire head. I'm in my third year on tam, so I'm kinda In a bad way right now with the hair. All that said, my oncologist assures me, the hair will come back. He just didn't say when. :-)0
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I'm just about 2 weeks into my break from taking Tamoxifen. Feeling better already! MO says take a month off and that I wouldn't notice anything until 2 weeks (did you know it has a 5 days half life?). I'm planning to take 6 weeks off. Not sure I'll ever go back on it. For me it's about athletic performance. My ability to participate well in the sports I love is a big part of my quality of life and I just couldn't tell if what I was feeling was Tamoxifen, menopause, or simply getting old. My muscles always feel kind of dead/spent as if I just competed in a big event, when it was just a regular workout, and I don't recover well. There are also the other side effects (joint pain, skin changes, headaches/dizziness, memory issues). If I don't start taking it again, I wonder if the guilt and worry will consume me. What do I tell my spouse? I may be choosing the quality of life now over general length of life. I hate this crap and the decisions we are faced with. Thanks for letting me vent here - xo
Oh and for those asking if oncologists can request a specific brand of generics... they don't have to. YOU can tell the pharmacy what brand you want in generic and if they don't get it you will take your business elsewhere. I told my pharmacy I need to stick with the same brand (because of potential changes in side effects and there is literature to support that), so they made a note in my file to always get it for me. Otherwise I think they just go with whatever is the best deal they can get at the time which is usually controlled at a much higher level for pharmacy chains. If you've been switched and notice a difference, tell the pharmacist directly before your next refill. They should get you which one you want - it just may take extra days. I always had to call a week early to make sure.
have a great weekend everyone!
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Andraxo I am with you on that. My quality of life sucks now being on the Tamoxifen, especially the new manufacturer. brand. Muscle aches, I pay now when ever I do anything in the way of exercising. Glad it's not me just getting old, you are experiencing it too. I feel like I have aged 20 years. I wonder, too, if I should stop the pills. But then there is the worry of wondering if the cancer comes back is it because I quit taking the pills or it was going to come back anyway. Every time I walk something cracks. I wake up suddenly in the middle of the night with a huge pain in my groin area. This totally does suck.
Good to know we can ask the Pharmacy for the brand. I hope mine cooperates.
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So I am now a new believer in the Cal/Mag supplementation. Started it three days ago to help with the muscle spasms at night and boy has it helped. Amazing it can make such a difference so quickly. So why didn't my MO recommend??? She just said drink more water.
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Just an FYI , I went to the pharmacy and requested the manufacturer that I liked for the tomaxifen and I got the one I wanted! She made a note in my file to get this particular manufacturer. So happy, I had less SEs on it.
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Good to hear, Lomlin. I'm on my third manufacturer of Tamoxifen. At first I thought this one was going to be problematic as I was achy and exhausted but now that the holiday furor has settled down I think all of that was from holiday craziness--we've had houseguests for a month, ranging in numbers from one to twelve! The last one leaves on Friday and I'm already more relaxed.
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Today I broke down and busted out the tube of Premarin and shot some estrogen cream into my hoohoo. Why would I make such a rash decision? Because for WEEKS now, I have been aware of my vagina. Aware when I stand up, sit down, roll around in bed. When I vacuum, when I scrub the toilet, when I feed the chickens. When I fold laundry and wash dishes and type on the computer, oh hello Vagina, there you are, why yes I can feel you, all sort of ...weird. Like there is a lump. Is that a lump in my bladder? Is that a lump inside my vagina? (poke, poke, jab, jab). Hmmm. I can't FIND anything odd and yet, all day, every day, no matter what I'm doing I FEEL something weird.
So after trying to convince myself that it was my imagination, that it was all in my head I had to finally admit that no, IT WAS IN MY VAGINA!
Thank you tamoxifen and your Sahara Desert effect on my formerly moist and functioning inner bits. Now they are dessicated, binding, chaffing, annoying and malfunctioning. .5 grams and I seriously felt like I was in the bathroom snorting a line of cocaine, shooting heroin or eating a Snicker's bar. Oh, this is so naughty, estrogen is so off limits, this is the HARD stuff this Premarin. It's insane. It's just insane.
No. I did not ask the permission or blessing of any medical professional. My vagina, my discomfort, my decision. I hope this fixes up that HORRID lump feeling I've been dealing with for so long now. If not, I'm in real trouble!
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Ah, runor, hope that helps. None of us need any more trouble!
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runor you are so hilarious!! Hope that works, I just use plain ole KY and actually the works for me just fine. I don't want anything to do with any hormone crap! I took HRT for about 2 years and quit for about a year, then went on estrace and definitely quit that, because that is when I was diagnosed with breast cancer and my whooha was feeling much better. So do I know that is why I got breast cancer, hell no! My mom also had breast cancer, a mastectomy, because that is what they did back then, and then a lumpectomy on the other side.
So my pharmacy did cooperate, I now have the first manufacturer pills I was on!! And the request is in my file to keep ordering them.
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While on Tamoxifen, anybody has tried a medication to help with hot flashes and nightsweats?
I have been taking Tamoxifen since April 2018 without any side effects and suddenly a few weeks ago I started to have hot flashes and night sweats. I wake up every 2 hours and I literally have not slept for weeks and sleep aids that I usually resort to are not working. Called my oncologist and they said I could take a break from Tamoxifen to see if it is Tamoxifen or if I am entering early menopause. I am 43.
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I just started tamoxifen 6 days ago... terrible bone pain, exhausted.. don't know what to do. Push through or quit tamoxifen? Does it get better with time? Then I read this: https://thetruthaboutcancer.com/truth-about-tamoxifen-part-1/.
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Elizabeth9, the link you posted did not work. But I have to be honest and say that when I see the words "The Truth About Cancer..." I get a little suspicious. The TRUTH is that the inner workings of the human body have eluded us for many years and continue to elude us and there are so many potential truths that I think only a flaming idiot would claim to have The One Truth.
Aside from that my experience on tamox has been that the side effects seem to ebb and flow. At first constipation, leg cramps, night sweats and crazy dreams. Then my hair started falling out. Still is. Leg cramps eased off but still sneak up and whack me when I'm least expecting it. Hot flashes at night have eased off but now that I said that they'll get bad again. I was very unhappy with the joint stiffness as I suddenly felt like I had an ancient body. Then there's my husband who rolls over in bed and asks me why I'm crinkling a piece of wax paper. Oh, that's not wax paper dear, that's the sound of my vagina dying.
I sprinkle epsom salts in my bath as a way to absorb some helpful mineral (magnesium?) and also because it's an excuse to soak in hot water. I resent that stupid little pill and yet I wonder how 'safe' I'd feel without it? I wonder how secure I'll feel going off it? Are we safe at all? (newsflash, no we bloody well are not, never were, never will be!)I have no answers. Just a pat on the back and nodding in knowing recognition.
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runor I read the article, just copy and paste into we browser but leave off the /. (the back slash and period) New info in there one being about estrogen. Pissed me off. The one that was mentioned I took: Estradiol (known as E2), the strongest form of estrogen. It's an interesting article.
Fortunately I am 64 and don't experience anymore hot flashes, yay, not even on the Tamoxifen. I agree there is a flux of SEs, some days it's one some days it's another. I told my husband, as we were watching TV as an ad for a pill popped up talking about all the SEs, I said, you don't see them advertising Tamoxifen because it would take about an hour to list all the SEs, some bad, some that might show up, and some that are mild.
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Elizabeth 9, I located and read both parts 1&2 of the article you referenced. Full of information but I cannot determine the accuracy, or inaccuracy, of that information as no sources are cited which leads me to question the content. Please do not base any decisions about your care without more documentation than those articles provide! We all need to be educated consumers.
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I'm 43 and I've been on Tamoxifen for a month and a half and so far all I've noticed is dryness (skin everywhere, vaginal, eyes) and more discharge than normal. Sex has been fine and the period I had was normal and on time. Knock on wood, I hope that's it. I'm also taking vitamin d, fish oil, baby aspirin, b complex and magnesium and melatonin before bed.
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