My MI said that in one year I will go off Tamoxifen for 2 weeks and then get blood work. I had a "false post menopausal " blood work while in Tamoxifen last year. Once I start Anastrozole I flip back to perimenopausal. I have no fact based answers, just what happened to me. No period for 17 monthe while in Tamoxifen. Blood work...post menopausal put on Anastrozole immediately. Took Anastrozole for 2 months started spotting, blood work ordered. ...perimenopausal and back to Tamoxifen. I have been back in Tamoxifen for 9 months. No spotting or no period blood work a few weeks ago is still perimenopausal.

LomLin - I didn’t have anxiety but I did have trouble concentrating. I was surprised at the meds you shouldn’t take with Tamoxifen like Benadryl. I would ask your doctor for a different med. Tamoxifen has other side effects like joint pain. No sense adding to the misery.

Diane

Princess, a number of people here have reported having different side effects with different manufacturers, possibly due to different filler ingredients in the pills.

Three weeks should be long enough that the Actavis brand is pretty well out of your system so you may well be reacting to your current brand. I've been on Tamoxifen about the same length of time as you and have had pills from 3 different manufacturers! Haven't noticed any big differences that I can attribute for certain to the Tamoxifen but that is not the case for everyone.

Have you asked your pharmacy about only getting the Actavis brand? Sometimes they will honor your request (with the possibility of a higher fee for a special order). If that doesn't work and your pain continues, well worth a talk with your MO. Five to ten years on a medication is a long time and finding the brand that works best for you is important.

My last refill of T was a generic - Mayne Pharma - which I don't want due to too many hot flashes. I just called in another refill and asked for the Actavis brand that I've been on since 2016 and I was told that "Brand names are no longer available, only Generic pills or in a liquid". Looks like I'm stuck with the Generic.

Lomlin- yes to the heart pounding. That’s usually what wakes me up at night before the hot flashes hit. I can see how that would be tied to anxiety for some people. I wake up, notice the heart pounding and think, “Here it comes”, because I know a hot flash is coming on.

Princess- I had hip pain for about 3 months, I was convinced I had Mets. It hurt to stand up, it hurt to lay down. Not even really my hip, more like the top of my pelvic bone. Then like magic it just went away. I don’t think it was even a different brand for me. It’s so hard when we’re told to watch for new lasting pain and then given drugs that cause pain!!

WC3- Cold flashes! I’ve been having them right along with hot flashes for most of the year and a half I’ve been on Tamoxifen. Sometimes they’re short, other times they can last a really long time. And they’re always Before a hot flash, never after.

Lala and BlueGirlRedState and pretty much everyone on the forum,

Thanks for sharing your wisdom on your Tamoxifen experiences. Have been trying to get a lot of exercise, drinking soooo much water, and have begun more regular stretching. I am continually amazed at the new side effects that show up and disappear just about the time I think I cannot take them anymore. Once I figure out how to manage the constipation, I may have this licked (until the next side effect).

CathieScott,

Migraine headaches are the worst. I used to get frequent migraines, too, and now get them less often (but they haven't gone away entirely). Have you tried Excedrin Migraine? If I take one tablet at the first sign of a headache (typically vision problems such as flashing lights), I can usually nip it in the bud.

I have joint problems on tamoxifen, and am trying to get the manufacturer switched back to a previous prescription. I spent some time on the phone talking to a pharmacist at the mail order company my insurance uses, and learned that Mayne bought out Teva's Tamoxifen business and stopped producing their own version. The pharmacist was able to tell me exactly which version of tamoxifen I was taking in December, when I had fewer side effects. Unfortunately it was the one no longer in production. I'm now going back to Actavis.

All of that is to say that you might want to try a different manufacturer. Good luck!

Cathie I agree with Princess try a different manufacturer. I had some bad SEs when I used TEVA, I was on Actavis, I went to the pharmacy and asked them the next time I refill my RX if they could please stick with Actavis. They did. Much happier. Good luck.

Thanks Catkin. I am 64, diagnosed at 63, and no periods. I do take magnesium and vitD, trying to find a vitB, do you have a recommendation? After the episode of the heart for several days, I am not experiencing that now. Weird, I wake up with a different SE from Tamoxifen. For a long while I wasn't getting leg cramps, this morning I had a real doozy. I was wailing, woke my husband up, kicked the dog out of bed. It was bad. So I wonder if I need to up my magnesium intake. I just don't know anymore, once I figure I have this licked I have a different SE. I only have been on the Tamoxifen since Aug of 2018, so not even a year yet. Geez.

I found taking codeine in combination with acetaminophen helped my migraine headaches. Used to buy a product called Mersyndol. No prescription needed. But in Canada they do not keep it on the shelves out front, you have to ask for it as it is stored elsewhere. No amount of aspirin or ibuprofen or tylenol touched my headaches until I added the codeine. I have not hand a migraine in a long time, thank heavens, my heart goes out to those who do. So brutal!

Lomlin. I take the Vitamin B complex because I heard that it is good for stabilising mood and calming the nervous system. I'll tell you what I take but I live in the UK so you probably can't get it. It is Boots RE:BALANCE Re-energise Vitamin B Complex. It contains the following at 100% NRV (Nutrient Reference Value) for each vitamin: Vit B1-Thiamin, Vit B2-Riboflavin, Niacin,Vit B6, Folic acid, Vit b12, Biotin, Pantothenic acid.

That's good the heart racing thing has gone, what a relief. A lot of people on this forum seem to find taking Magnesium helpful for cramps, have a look at the old posts. I had cramps just mildly and now hardly at all (though once I had a shocking one that left me with an achy calf).

I'll be really annoyed if some new side effect comes in the last 2 years of my 5 year stint. The side effects do come and go. I hope that we all can reach a steady state that is tolerable.

lala1 My PS told me he didn't need to see me till roughly 2028 unless I have problems. He did tell me that 10 years was the recommendation but with the new implants it could be longer. He said I may not need to have them switched out. The research is ongoing on that end, and as implants change, so do the recommendations.

I would love to get an “all clear”. Even if a scan was clear doesn’t mean it will stay that way unfortunately. For my stats my MO said she would consider me “clear” in about 20 years if nothing pops up before then. It’s the worst part of the whole “experience” for me, the not knowing. The simple answer to “are you cured?” Is, time will tell. Most people don’t know this, I sure didn’t!

I had a couple of side effects that seemed to come and go really quickly in the first two weeks - some ashiness and stuff. The one that's still bothering me now - acid related - seemed to settle in between week 2-4.

Also I'm waking up sweaty the last week or two, which NEVER used to happen to me. It's really disconcerting.

Elizabeth9 and Twills - I struggled with that question too! I finally came up with an answer that works for me. I say, "Everything went according to plan and they say I have a 90%+ chance that I'm done with it forever!"

To me that captures the fact this round of treatment is over, but the final outcome is unknown (i.e. not perpetuating the idea that early stage cancer is truly curable and NBD), but also that treatment went well and framing it positively to make it easier for the listener.

Elizabeth9, when people ask me how I am I often say, " Fine. For now." Because that is the truth. For now I am fine, although I might learn otherwise at any moment.

Molliefish, I am wondering too if I would continue beyond 5 years. At this point no one has suggested that I should. Some of the initial side effects have gotten more manageable, most happily the intense body ache in bed at night, the stiff joints, that seems to have really eased off. Still get hot flashes day and night. Still have Ninja leg cramps that leap out of nowhere and attack me. The odd bout of constipation (that was way worse in the beginning!). I have aged rather drastically and my hair is thin and frizzy and my middle is fat and frumpy. But I think I would consider it for another 5 years, but only maybe a pill every few days. I would reduce the dosage for sure. There is no research saying a reduced dose is effective. There is also no research saying it isn't. So.... ?