Bottle o Tamoxifen
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At the moment, I use this https://www.nourishedlife.com.au/organic-tea/26860/pukka-tea-night-time.html OR I ask my naturopath to whip something up for me that is not going to interact with anything else!
The reason why SEs can take a while to take effect is that you only get the full blockade of estrogen after about 6 weeks. So that means that your body then starts to try tocompensate and rebalance for what is occurring.
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Sm627 - I bought it at Bed, Bath and Beyond for under $10. Amazon is another source. When I was paying for it the cashier loved it so much she said she was picking up a few of them for her girlfriends.... to give as ‘menopause gifts’ at her weekly girls night out dinner. I bet they all looked ‘wind swept’ hot that night LOL!
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Dipaquette: I have found magnesium helps the constipation. Also, they say it helps with hot flashes. I am not sure about that but what helps me is exercise. I know it's hard to start when you are tired. But it makes such a huge difference. I find that sitting too long makes me get cold followed by hot.
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Wow! There are a lot of posts here. I tried reading all of the latest ones but decided to just ask. Anyone have leg pain? It seems to be all over my lower left leg and on the right too but not as much. It's not constant but comes and goes. I can't tell if it's muscle or bone but my joints do ache. I'm in my third month of tamoxifen and so far no hot flashes, night sweats but definitely insomnia. Anyone else having leg pain?
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Hi Clynnejohn,
Leg issues are common on tamoxifen. Along with the hot flashes and insomnia I had leg problems. Mine started 1 week in (lucky me lol!) I got muscle cramping and spasms. Once watched my calf muscle twist backwards like it was possessed by the devil. My feet felt like they’d been beaten with a baseball bat and getting out of bed was HARD. A good exercise regime including squats and lunges along with other strength training and cardio pretty much obliterated my issues, rarely bothers me anymore. If I break from the gym for more than 2 weeks it comes creeping back. I also take a magnesium supplement which helps with all side effects. You might consider an exercise program, doesn’t need to be fancy and can be done at home. Worth a shot IMHO. Hope you find relief!
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Radiation or tamoxifen? I have been having pain from my shoulder to my elbow on the side I am receiving radiation, I am 8 days into radiation and 6 weeks into tamoxifen, before this the tamoxifen mostly has caused pain I previously injured joints, like I have arthritis my knee and that has been like Mr worst days every day, had surgery on my ankle last summery and that is bothering me more and history of back pain on and off now constant, but the shoulder to elbow had never been a problem. I am just trying to figure out which one is the culprit, do had anyone had the shoulder and arm pain during radiation?
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I met with the Medical Oncologist today for the first time. She's very pleasant and I understand it's her job to push the anti hormonal meds. So when I mentioned side effects she had an answer for each one, and how they weren't that big of a deal and in fact some were positive. Give me a break! I asked if she ever took these meds and the answer was no. I asked about the vaginal discharge and she said some patients are happy with that as it makes them less dry. UGH. She also mentioned that if someone didn't have hot flashes going through menopause then they probably wouldn't be effected with this drug. Was also told that Tamoxifen would reduce the reoccurence rate by 50%, and the AL meds 75%. Of course this wasn't specific to my situation. Does anyone has any statistics about this? I asked about stomach upset and the doctor kind of waved that off too.
I did agree to try Tamoxifen as my bone density is really low so don't want to cause anymore bone damage. We'll see if my stomach could handle this med or any of the other 3. I'm waiting several months until after my vacation before I start this because I don't want to be sick on vacation if I should get side effects. Just curious about how bothersome the side effects have been for folks.
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I tried to get back on the T train after a 4 month break. It could have been coincidence (maybe I came down with a virus?) but after the second day on Tamoxifen, I felt like I had an inner ear infection. If I lifted my head from the pillow, I got dizzy and when I get dizzy, I'm nauseas. I was babysitting my granddaughter so was desperate to feel better fast. I discontinued the Tamoxifen and started taking an antibiotic that was leftover. I still didn't feel completely well for 4 days. I intend to wait until I have nothing else scheduled (like babysitting) and try again to restart the Tamoxifen.
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Dipaquette, did you havefull range of motion after your mastectomy? Your pain could be caused by combination of post surgery and radiation causing some immobility. Just a thought. I had issues with range of motion and some shoulder and rib pain pain after radiation but physical therapy worked wonders. I do exercise daily. I am fortunate to not have side effects from tamoxifen other than being thirsty. I feel bad for all the women here that have to deal with other side effects.
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I’ve been taking tamoxifen since Feb 12, no major issues, had my normal period on 3/15, yesterday I started bleeding , thought maybe it was spotting but today it’s heavy, just 18 days after my period. Has anyone experienced this? is there an adjustment period? I didn’t have chemo and my periods have been low clockwork since I stopped the pill at diagnosis.
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For hair loss, you can spray your hair with equal parts apple cider vinegar and water! It has had great effect on my hair and my hair is longer than its ever been in my life. I did not have chemo but just slow to little hair growth before I started using this natural formula on a regular basis. Wet your hair in the shower, pour the water/vinegar solution over being careful to close your eyes tight, let it sit for a minute and wash your hair as regular.
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Dlpaquette- I agree with legomaster, shoulder pain is a common side effect of the surgery and rads just make it worse! It just tightens everything up. I’ve got an appointment for PT later this month because I’m Still having cording issues as well as some swelling.
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Veeder14- I’ve only been on Tamoxifen for 7 months, but for me, the side effects are totally doable. I have massive hot/ cold flashes, but I’m also on ovarian suppression, so it’s twofold. I’ve never been a good sleeper, so I can’t blame that on Tamoxifen. A little stiffer, a little fatigue, a little dry skin. Joints don’t hurt any more than they ever did before, sex life not ruined so far, coconut oil seems to be working to keep things normal down there. A 20minute nap on the days I can get one makes a difference.
I hope you do well on Tamoxifen, and you’re se are minimal.
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It has been a while since I visited, and I tried to catch up on posts. Someone asked about biotin. I have alopecia areata (a couple of bald spots on my scalp) likely due to the immune system effects of chemo, tamoxifen or whatever. Biotin is not really effective for this specific condition and my onco-dermatologist recommended steroid shots every 4-6 weeks and 2x per day topical steroid treatments. So, no biotin other than what is in my multivitamin. I think I see some improvement but it will take 6-12 months for anything noticeable without a magnifying glass!
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Dlpaquette, you sound like me at 6 weeks. I think a lot of the real SEs bloom by that point. Call your MO or prescribing doc. Mine has tinkered with some of my support meds and I feel SO MUCH better this week. There were days when I would have chosen more cancer over T. There may still be some of those days in the future, too. But for now, I am willing to stick with it.
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Thanks for all the responses, I will have to call my MO. Am glad to hear they have something they can do to help some of the SE. The joint pain, muscle spasms and constipation seem to be worst part, but also have severe hot flashes with sweats, dry skin and sore tongue... but so far even though these are not at all fun, they are better than cancer....
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Thanks for your post Cpeachymom. I'm so afraid to take this stuff. I've never had a hot flash and don't even know what to expect. But hair loss worries me more, especially for 5 years! Will report back after I've been on it for awhile.
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supposed to start today on tamoxifen really apprehensive. Was on Anastole stopped. Shud I be afraid
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2ND20, we all have fear. However, we sometimes need to take action, despite our fear. I was worried about SEs from tamoxifen too but my fear of recurrence was greater than my fear of SEs. There is no guarantee that recurrence will not happen even if we take tamoxifen, but the fear of not taking an action because of POTENTIAL side effects still didn't outweigh my fear of recurrence which, in my case, was much higher than average.
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Cpeachymom - is the coconut oil something you do daily? Is it just regular old coconut oil
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vl22- yes, just regular coconut oil from the grocery, everyday when I get out of the shower. Not because I was having problems, just trying to prevent them! Also took a “use it or lose it” mentality to keep things in working order
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For those who are struggling with muscle cramps through the night, I have a somewhat wacky suggestion. (I was having trouble with cramps especially in my feet and calves). This may sound completely crazy but it has worked for me and there is a tiny bit of scientific evidence in support of this solution. Basically I put a bar of Irish Spring soap in the bed down by my feet. It really seems to do the trick. Also, if it feels like it has become less effective, I scratch up the surface of the soap. It may just be the placebo effect but it has really worked for me. It is cheap and worth a try.
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I have been taking Tamoxifen for 2 weeks. I had NO clue that is could cause you to be cold nor did I know it could keep you from sleeping. I have found myself WIDE awake in the middle of the night for several nights now. Is this really from the Tamoxifen? Anyone have some suggestions on ways to help me sleep? I work a full time job along with raising two boys...I need a good night of sleep!! Also, I can NOT get warm, my body just shivers (until I have a hot flash of course) Thanks to all of you who mentioned this. I did not associate it with the medication. I just assumed that chemo changed my body temperature. I guess I can handle the side effects as opposed to having cancer but I sure would like to get a good nights rest.
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snew22- yes, the COLD! I’ve found I’m better off trying to stay warm, and then just deal with the hot flashes when they come. So I’ve even started sleeping with flannel pjs on again, because the cold was keeping me up more than the hot flashes. Extra blanket too. Since I know the hot flash is going to wake me up anyway, I just toss the covers off when it comes. When I find myself wide awake at 2am, I take half a 5mg chewable melatonin. Puts me right back to sleep, and I’m not drowsy at 6am. I’m interested in how summer will feel. I find if I’m cooking in a hot kitchen and get a hot flash, I notice it less, probably because I’m already warm
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Cpeachymom - so it's okay to take melatonin? I have been so hesistant to take anything in fear of it reacting with the Tamoxifen. I just never know what my restrictions are. Also, I read back to where you were talking about the coconut oil? Does it really help? Dryness has been a huge issue for me
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I just started tamoxifen today, I put it off for almost a year. My doctors OK'd me pushing it off until January but somehow it was never "a good time". Today I reached in the cabinet and took it after lunch. Let the fun begin!!
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Joshua- I would check with your MO, but mine recommended the melatonin to me. I don’t need it to fall asleep anymore, but it helps me get back to sleep in the middle of the night. I was warned it could cause nightmares, but that hasn’t been a problem, even when I was taking a full 10mg every night, trying to combat the steroids that were keeping me up. Now I just take 2.5 mg once in a while. And yes, many ladies on this site recommended the coconut oil, so that’s what I’m doing and it’s working for me. That and drinking LOTS of water!
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Pamela, I hope it goes well for you. Many women do not have major side effects. You hope you fall on that side of the statistics. If you do have issues you have a big support group here. It does have a good track record of reducing recurrence. I try to focus on that
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Pamela, i hope things go good, remember to drink lots of water when you take it and all day. Stay hydrated. I also found it helpful to keep a journal to write down any SE.
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Pamela - I’ve been on Tamoxifen for a month with no side effects. I understand they can appear overtime, but for right now I am good. I am drinking a lot of water and I’m an exerciser, so maybe this is helping.
Wish you luck!!
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