Bottle o Tamoxifen
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I take 0.3mg of melatonin. My holistic doctor said to start with smallest possible dose and work up. Doses too high cause the opposite effect and give you weird dreams. I take this tiny dose and sleep like a log! On mornings that I have to get up extra early I can't even take it or else I'd sleep through my alarm. So for me, smaller really is better.
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I was prescribed it for the effects of melatonin itself, not for sleep, so that may be the difference.
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ksusan--If you don't mind me asking, what effects are you trying for with the melatonin? Or maybe you're trying to stop or prevent something? Just curious as to it's benefits (or side effects) outside of it being used for sleep.
Thanks.
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Both my major cancer docs (MO and ND) say that adequate melatonin levels may help prevent cancer, and they both think 20 mg is a good dose for this. They say that the critical number is your actual melatonin level, not the amount of sleep you get or anything about your sleep architecture.
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Jersey Girl-- First, I'm sorry about your SE from the tamoxifen. I wanted to share that I have been on taxmoxifen since Nov. 2012. I've had SE off and on, but with my latest refill of the Rx, I had symptoms 5x worse. I took this Rx, by manufacturer Teva, for about a week, until I realized what might be causing the increased SE. I stopped the tamoxifen and voila -- SE nearly gone in 3 days. I got my Onc. to write a Rx for a different manufacturer, but was afraid to take it. So, I'm tamoxifen free for about 6 weeks now. I'm feeling so much more mentally clear and less fatigued.
After this incident with the tamoxifen, I called Teva and reported the problem. Their QC dept. was responsive and actually had me FedEx them some pills for them to test. My husband works in the industry and definitely says not all generics are created equal, even with the same main ingredient. I checked on drugs.com and found what fillers are in the various tamoxifen pills. It's interesting, to say the least.
After discussing with my onc., we've decided for me to take a drug holiday for 6 months and have a PET to make sure there's no errant cells lurking. I'm hoping for a negative scan and no more drugs. FYI- I was diagnosed Stage IV from the get go. I'm very grateful.
All the best to you JG, and everyone else here.
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Thanks Buddahead.... I never felt at peace taking the Tamoxifen int he first place, so right now, I feel like my body was telling me that, too... We'll see. Still haven't heard from my MO. I called to let them know I'd stopped taking it... I'm on a break from Herceptin for 6 weeks, too, so we'll see how I'm feeling in the next couple of weeks...
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Thanks for the responses. I'm on .5 this week and see how it goes. I had no idea about the benadryl interaction so I switched. Not sleeping...again.
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Hi all. Just checking in after my follow up appointment. I asked my oncologist about tumor markers and she said they are not validated for use (and not reliable) for following someone post-surgery. She said they usually use it for Stage IV patients, which I am aware of because of my brother. Apparently some people can have stable or "normal" tumor markers and still have recurrence/metastasis God forbid. Anyway so my blood tests are out and they are totally normal and stable. She was very thorough during the exam yesterday, feeling my other breast and the scar line, and even checking my spine for any unusual pain spots. I was very happy with her as always. Wishing you all good follow-ups going forward!
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Hello, ladies!
Started the T last Thursday. So far I feel fine, although I am quite tired. I don't know if this is from the meds or just life (going through a horrible divorce at the moment, just finishing up ten months of active cancer treatment...).
Regardless, I'm wondering if it's too early for SE's to make their appearance. I'm very worried about hot flashes. Those were horrendous during chemo. When will I be in the clear, do you think?
Good luck, all!
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HH, my MO told me that if you do experience side effects, it will happen around 6 weeks after the first dose.
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I am considering taking a break from Tamoxifen before my vacation so that I will hopefully feel better and therefore have a good time. Does anyone know how long it takes to get it out of our sysems?
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Blownaway, the half-life of Tamoxifen is about 5-7 days (for full clearance from the system).
My MO said that SE timing varies. Some women get hit like a truck right out of the gate; others of us have SEs that peak at six weeks; still others experience nothing at all. My hot flashes/night sweats got worse within a week, but other than that and mild constipation, I'm not having any problems at three weeks. <knocks wood>
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solfeo - the bottoms of my feet burn. I had "significant" hand and foot syndrome during chemo that caused this neuropathy, plus other sites.
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Solfeo, I had neuropathy with Taxol. A few months after finishing treatment, the neuropathy starting getting worse which apparently is not normal. My MO did a bunch of tests and I had a borderline B 12 deficiency which can cause neuropathy. She tested for some other vitamin/mineral deficiencies but i can't remember what they were. I started taking a B12 supplement sublingual and the neuropathy improved quite a bit. It seems to be continuing to improve so I am still hopeful it will go away completely. Neuropathy after Taxol can last up to 2 years. A friend of mine also had similar symptoms (she didn't have cancer) and she too ended up having a borderline B 12 deficiency and her symptoms went away. Hope yours is caused by something similar not mets. All the best, MJ
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Hi all! I am currently undergoing radiation for stage 1 grade 1 IDC. I was just told yesterday that I don't have to have chemo because my Onyx score came back low so chemo would not benefit me. For that I am very thankful! I do however have to start taking Tamoxifen after radiation. I'm reading the stories here and have heard so many horrible SE from this drug that now I'm terrified. I did relay my concerns to my doctor and he said of course each person experiences different SE or some none at all. I was hoping if anyone has experienced any success with this drug. Thanks
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Lots and lots of women have experienced success with this drug. Unfortunately, you'll mostly hear us complainers on here but there are multitudes more who don't have any SEs and they just don't post.
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Thank you!!!
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Lynn, I've been taking it for 7 months, and while I have some side effects, they've all been manageable and not major.
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Ok...I know this has been mentioned here before--leg cramps! Last night I woke up with one coming on, usually I just jump out of bed and the stretch makes it go away. Not last night. I walked around until I literally got on the floor and did not know WHAT to do to stop it. I was crying out and it woke up husband who was a little freaked out too. Maybe it lasted 5 or 10 minutes but I thought my muscle was just going to rupture it hurt so bad. I have magnesium and guess I'll be more consistent in taking it!! Any other suggestions? Or tips to stop them once they come on?? I can't imagine what I would have done if I was out shopping...or driving and this happened!
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Lorie - I was getting those. Try drinking a lot more water and take magnesium. I think there is good advice on here on what type of magnesium to take. I take magnesium oxide amino acid chelate. I think some women take potassium for these, too, although I never tried that.
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Lorie, I was getting foot cramps almost every night last week. But I added magnesium and they went away, plus it's good to take with calcium. So I'm happy it was a simple fix.
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Lynn: could your oncologist hazard a guess about how the tamoxifen might lower your chances of recurrence and other unpleasantnesses? (Probably only an educated guess on her/his part....)
I was on for about four months before fatigue and nausea became bothersome; my MO allowed as how we might try a holiday to see if they're SEs of tamoxifen or something else. (I was totally on board with the 'not menstruating' SE, and hot flashes were present but not untenable.)
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loriekg - another vote for magnesium. I haven't had any leg cramps since I started taking it. The last straw was the cramp on the top of my lower leg, the muscle that runs along your shin - didn't know there was a muscle there but it was painful and I couldn't figure out how to get it to stop. The magnesium has also lessened my hot flashes.
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You can stop a leg cramp in it's tracks by turning your toes up towards yourself the second you feel it coming on.
The only real SE I am having is the chills. I wake up freezing around 4-5 and can't get warm with blankets and a heating pad on top of me. I now refer to Tamoxifen as my Chill Pill.
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I think I get weird leg cramps (possible nerve damage from an unrelated problem): the muscles that twiddle my toes upward and one of those skinny little muscles down the side of my calf that only medical students and physical therapists can remember the name of. But I'll look into magnesium citrate.
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LynnBMj, I have been taking Tamoxifen since August 2015. I have had no appreciable SE's that I can completely attribute to tamoxifen. I was off it for a month to have surgery and really I think my hot flashes were worse during that month. I've had occasional leg muscle spasms at night but I had those before. I have hotflashes occasionally but again peri-menopausal and had them anyways. I have some memory issues but that is also a side-effect of chemo and just getting older. I would try it without fear and preconceived notions. That being said some women do have severe SEs, however SEs aren't permanent so if they are kicking your butt you can always stop taking it. Each person's case is different but the statistics of this drug demonstrate success in preventing recurrence in women with ER/PR+ disease. Your MO should go over that with you. Also, you can try different brands of Tamoxifen as some women have SEs due to the different fillers used in the production. I am grateful that it is an option and grateful that I don't have any severe SE's. Hopefully, you will be one of those without significant SEs. All the best, MJ
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LynnBM- I have been on tamoxifen for almost 4 months. I have done very well on Tamoxifen. I have hot flashes, but have had them since my second chemo treatment put me in chemopause. I have trouble sleeping due to the hot flashes, but I can say it is getting better. I take Melatonin before bed and I think it is helping with my sleep. Sure I have aches and pains, but they come and go. I had them before I had cancer so I can't blame the Tamoxifen.
I wouldn't worry about taking it at all. Try it and have an open mind. I was scared about taking it too but there was no reason for me to be. I have done well. Good luck!
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LynnBM---I've been on Tamoxifen for 3 years with few side effects and the ones I do have, I have learned to manage with supplements, yoga, exercise and massage. I feel great! In fact, I feel better now than I did before BC, mostly because I have learned to take care of myself. Don't be afraid of Tamoxifen. It's a great little pill for us ER+ gals. I have been on 2 different brands both with different SEs. The Teva brand works better for me and CVS was happy to order it for me. So give it a try and if you do have SEs, just come back here and someone here will help!!
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LynnBM - I am also doing okay on Tamoxifen. I stared radiation on 11/23 and Tamoxifen on 11/30 so they were pretty much started together. I was exhausted! but worked every day..had radiation at 7:30am and then to work. I would bring my twins to school at 7am, radiation, work, pickup from school and then our usual activities etc - I just pushed through and was okay. I didn't realize how tired I was until it was over but really wanted things to remain "normal" for my family. My eyesight was slightly affected so had trouble driving at night but that is also better. At the beginning of Tamoxifen, I also got nausea, chills at night, and bone pain but lots of that is going away. I take gabapentin which is supposed to help a lot and I now take Magnesium at night before bed...one glycinate and one oxide. I use Turmeric with black pepper in at least one meal per day and drink the Yogi tea Joint Comfort with Turmeric. Not sure which is helping but things are better so I'm sticking with it:-) The one bad part is the pelvic pain and bloating and I've gone to my OB several times as I am afraid of the uterine lining thickening. I am having another ultrasound this Saturday as they've found Ovarian cysts before and they resolve but, this bloating is not good - I've actually lost weight since this entire ordeal began on Sept 1 and eat well, still exercise (that also helps A LOT), and I am thin so the bloating is quite noticeable. The radiation did cause lymphedema in my breast but I work with the lymphedema clinic and that, too, is resolving.
To me, as I've said before, that little white pill could save my life so I say a little prayer each night at 5pm when I take it and move on!
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Hi ladies, I have been on it a little over 2 years now and will be at least another 3 then an AI for another 5. I started with few SE's then switched to teva brand and have zero SE's. I feel great , better then before, no moodyness and pain ones a month
I am pre menapausal but have no periods and don't miss them. I was so afraid of starting sick of SE from treatments. For cramps try gentle stretching before bed and a heatpad 0
