Tamoxifen side effects and long Term use

My MO didn't react when I complained about it early on-never seemed concerned it could be a recurrence, more a feeling I got from MO like this was par for the course. Better than cancer, I imagined the MO thinking, suck it up, it goes with the T turf and is less than what many get for SE....anyway:

But my main reason for posting is I have a great tip that I hope helps you!!! I read it somewhere (on these boards) and can't for the life of me find it now, but someone gave the tip to wrap your legs in extra blankets at night-the key is to keep them VERY warm. And I tell you, it really works!!! At least, for me it did. I hope it helps you. I get bad foot/calf cramps at night/sometimes waking me up in the middle of the night. It was bad at times in the summer when it's just too hot to put extra blankets on at night. But now that the weather is getting cool again (I'm in the NY area), I'm putting a couple of blankets over my feet at night. I hope it helps you,

Let me know!!

I've had leg & feet cramps since I was a teenager. Tamoxifen made them worse. Sometimes I can go 2-3 days without a cramp. Then have to jump out of bed several times a night to walk them out. Occasionally walking doesn't help, but that is usually when I try to will it away with my mind. Not moving my feet or legs helps. Not very realistic, tho.

I do think exercise(walking, running, etc...) help. I've had to cut my swim workouts short because of these cramps. I also seem to get them a lot in Pilates class.

One other thought, when I was anemic(hbg 9.0), I also got muscle cramps in my abdomen.

I'm at the point where I don't want to complain about this any more to my MO. He might decide to switch me to an AI(if I test menopausal). I fear worse side effects with those. I've only been on Tamoxifen for 2 years. Will have to re-evaluate at the 5yr mark. I may not continue past 5 years. I have so many new aches & pains since starting Tamoxifen, it all can't be aging.

Yes on Tamoxifen and YES to the leg/calf cramps at night :-/

Jenn

400 mg of magnesium every day - MagOx is the best. This kept the awful leg cramps away - it really works. I also had extreme fatigue and muscle aches - so much so that I was diagnosed with fibromyalgia. Fibro symptoms are also the same as Osteomalacia, which I was finally diagnosed with. My endocrinologist finally reversed the osteomalacia, but it has always been up in the air if I still have fibro. It's amazing what some of the oncologists are telling their patients (not meaning yours - I fired my first 2). My first one said the side effects were the flu - my 2nd one said that hot flashes were no big deal, easy to live with. My 3rd was wonderful, but unfortunately moved away from that area. My 4th I tolerate and depend more on my GP, who is fabulous.

Been on Tamoxifen since April 1st (thought April Fool's Day was appropo!) I have had bone/joint pain and a couple of months ago began to have cramps in my right foot.......on the top. When I get out of bed in the morning it feels like I can't put pressure on my foot to bend it and get going...like it won't hold me up. I told MO but she feels like it is unrelated (how do they know this??) The cramps get a little better as I walk a little more, but it never really goes away. Folks keep telling me to just walk more. I feel much older than my 47 (one more week til 48!) years!! It makes me feel not alone to hear that Anmano has had foot pain. I have no appetite (yet I gain weight) and have a dull headache daily and no energy and my brain is fuzzy. How on earth can I do this for 5 years? (MO says 10 now, but I told her I am only on the 5 year bus for now!) Thanks for sharing ladies!

I have only been on tamoxifen for a little over a year but after only a couple months my calf in my right leg was in soooo much psin, cramped, woke me up...they said it was due to low phosphorus and magnesium levels from radiation and chemo. Gave me a supplement and it helped a bit. Noticed bad cramping again lately, realized I havent taken Phosphorus supplement for a couple months.

I am on Tamoxifen and began having leg cramps after I began participating in a clinical study that is testing the active ingredient in broccoli (DIM). I don't know if I'm on a placebo or the real thing but think it might be DIM because the leg cramp symptoms. I find drinking tonic water (I do diet) which has a little quinine seems to help. Staying well hydrated makes a difference too. Saw my MO today and he may be changing his recommendations (2.5 years Tamoxifen, 2.5 years aromatase inhibitor). Likely to be 10 years and maybe just Tamoxifen. We'll figure it out over the next year.

Hi. I don't know exactly where my pain is coming from but I know I hurt. It used to be that I would wake up stiff and in pain and it would go away when I got up and moved around. As of this weekend, it's sticking around. Also, the pain often wakes me up. Last night my legs were aching and I took 4 Ibuprofin, so that I could go to sleep. It feels like joint pain where things connect. I have been on Tamoxifen for over 2 years and I am also in medical menopause. I am tired, achy, and have gained about 20 pounds. Unless I work very hard at it, the weight doesn't come off. I will be on Tamoxifen for a total of 10 years. I hope it doesn't get too much worse. Take care and God bless you!

I have recently changed taking tamoxifen during the day instead of evening. I teach through the heat discomfort and memory stuff. I have to sleep and it had evaded me long enough . It took 3-4 weeks to make a difference but it has. Hoping this will encourage you to be a tamoxifen bear in the winter during the day. I live in a climate that is moderate but the heat-well I steam up my own glasses.

I was taking a multiple vitamin and a few other supplements, but my enzyme levels went soaring up. Now I just take Vitamin D, aloe vera (for gerd), and magnesium (for muscle spasms) and my liver and pancreas are almost back to normal. I don't know if it was one particular vitamin or not, since there was mega-doses of several vitamins. I bought good vitamins with as few fillers as possible. Now I'm trying to get my vitamins from food now. Juicing helps, but I've had a harder time since the farmers markets are closed for the winter. I also try adding turmeric to tea instead of taking a supplement. I figure it kills 2 birds with one stone-green tea and turmeric. I could drink the aloe vera, but I found a supplement with no fillers at all, so I take it in capsule form.

I take 50,000IU once a week as well. It keeps my vitamin D levels just within normal ranges. There is a lot of info coming out about calcium supplements and the heart. One more thing we have to watch out for. sigh. I can't take calcium because it hurts my stomach. Thankfully, it's pretty easy to get it from from food.

This is definitely the topic for me today. I am on Tamoxifen too and I can certainly attest to the joint pain but a few days ago I was afraid of its SEs for a related more serious reason. I had been having a burning sensation on the back of the calf of my left leg. It was kind of like hot flashes on your calf. It came and went and never following any exercise regimen. I went to Mr. Google and freaked myself out over the possibility of DVT or a clot. FYI I had a blood clot when I was 16. A girl kicked my leg instead of the ball in soccer. Didn't think it was that bad until the clot travelled all the way up to my upper thigh. I was hospitalized and given blood thinners and treated with a heat lamp. Keep in mind that was over 40 years ago so treatments certainly have changed. Fast forwarding to now I was originally put on Arimidex but when I developed osteoporosis my Oncologist switched me to Tamoxifen. I explained about my clot but she reassured me I have had children and no incidents since that time. This burning sensation had been going on for a week or so so I called my Oncologist. They scheduled an ultrasound which they did Tuesday. Fortunately there is no evidence of a clot; that's the good news. The bad news is they don't know what is causing it except possibly my over exertion on the treadmill. I do tend to walk fast and hard. My next appt with my Oncologist is next month so if I am still having this issue something will need to be done. I like the rest of you know all too well the benefits of taking the drug and the SEs as well. Even though a small percentage have problems like DVT or a clot any of us could be part of that small percentage. We all know we have to be our own advocates and nothing short of my taking my last Tamoxifen will make me feel more comfortable about taking this drug. Right now it is what it is. Diane

I have been on Tamoxifen for 18 months. I have muscle pain. My ONC said to take it as long as I could stand it. I am taking Cymbalta for the depression is causes and it also helps with the pain, I take 30 mg a day at night with my dinner. Ask your family phys about taking Cymbalta.

Well just started tamoxifen today- as a matter of fact first pill 30minutes ago. My doctor was pretty honest and said about 50% of her patients have no side-effects and take it like a vitamin- the other 50% have any range to all of the side-effects and struggle with it. She told me she was glad I had my oncotype done as it did not support any benefits from chemo and with an estrogen positive cancer she would always prescribe estrogen-blockers. She and I discussed length of time and she said telling people 10years is too overwhelming so start with 5 years and don't think further right now. I am not menopausal but she feels the recurrence percentages are better with aromatase inhibitors and when I become menopausal will switch me over.

I hope I do ok- I am someone who does not remember to take a daily vitamin and don't really take meds except fish oil and fiber. I do walking 2 + miles/day and yoga 3xwk- I don't lift weights but Yoga is weight bearing as you support your entire body. any thoughts on weight bearing exercise and the osteoporosis

I have been on tamoxifen since July 2011. Leg cramps, joint pains, increased bruising, etc... Had an ultra sound on my left calf to check for a clot, nothing found. Learned no one thing resolved the issue, but by using a combination of different things it has helped. Staying well hydrated, taking supplements (Vitamin D3, Magnesium, Calcium, Glucosamine, MSM), regular exercise plus walking, Pilates and Yoga). If I don't do this combination of supplements and exercise I notice increasing cramps and joint pain, so it has become pretty much a routine for me now. I also struggle with anemia, but my MO does not want me to take extra iron, so I try to increase my iron intake through my diet. I do not have the same muscle tone or strength as before, but keep working on it by adding weights to my exercise routine. Need to lose about 5 pounds or just get rid of my belly fat, but it just won't go away. How much of it is attributed to the tamoxifen I do not know. It could be a result of all the treatments or just plain getting older. Regardless I just keep trying to move forward and get as healthy as I can. My MO wants me to stay on tamoxifen for 10 years, although this can change, time will tell.