Bottle 'o Tamoxifen

I have been on Tamoxifen for 6 weeks, I am wondering if it is normal to have a follow up with your RO to discuss side effects? Mine habe me the script and made a a appointment to see the NP in 4 months. I just figured they would want took discuss it sooner but I guess not. So far the side effects are not fun but I feel I can suck it up. Between the severe muscle spasms, the joint pain that has significantly increased the pain in previous sore joints and causes even the healthy joints to hurt like my even elbow. Add the constipation that has never been a problem a I eat tons of salad, dry mouth and the miserable freezing but the second you try up warm up you go into a raging hot flash, I hate that lately the only choices are being extremely hot or being cold to the bones there is no warm.Add the lack of sleep and life is a picnic:( I am worried about how the exhaustion from radiation combined with the exhaustion from tamoxifen will leave me... I am working 40 hours a week the between travel to and from and the actual radiation I am on the go for 10 hours straight only to come home and make supper do laundry etc, I don't think I am going to be able to do it all if the radiation increases the exhaustion... right now I hit a brick wall at 2 to 3 pm and struggle to stay awake.

dlp, i requested an appointment with my MO. They had me scheduled to come back at 3 months. Don't be afraid to call and tell them you want to see your MO. They work for you.

I am tired all the time also. Hate it. I used to have so much energy. It is coming back slowly. But in the meantime I'm cranky. Lol

This little gadget is a life saver when the hot flashes hit.....can hold the phone in your lap in a restaurant and direct the air up toward your face.

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.

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.

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!

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.

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.

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.

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.

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.

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.

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.

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

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.