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Runners and other Athletes on Tamoxifen

135

Comments

  • Curlykat
    Curlykat Member Posts: 7
    edited March 2016

    I'm so glad to have found this thread! I'm a weight lifter and yogi, and am currently dealing with some tendonitis in my shoulder that happened after workouts that I don't think were that tough. Knowing that the Tamox might make me more susceptible is something I'll discuss with both my orthopedist and Med Onc.

    Also, reading your side effects has helped me to identify some of the other things I've been experiencing over the past few months that I wouldn't have connected with the drug. Will discuss those as well.

  • ORgal
    ORgal Member Posts: 37
    edited May 2016

    Love this thread. I haven't been able to figure out why I can't keep up on walks, bike rides, runs, etc. I used to be the one in the lead and now have a hard time keeping up. Also, if I do a lot of physical activity in a day, like yard work, I can only do so much and then I am spent, exhausted. I too was in the best shape of my life before diagnosis.

  • clairy1960
    clairy1960 Member Posts: 19
    edited July 2016

    Like others have said, I am glad to find this thread. When I was diagnosed, last september, and given my treatment plan, I told friends and family "I am an extremely healthy person about to make myself very very ill in order to be healthy in a different way afterwards." And I was right. I did get very ill with the chemo, very tired with the radiation and the tamoxifin has its own package of side effects. However, I have my yoga people who were amazing and supportive, helping me do what I could when I could; and my trainer who has cheered me on throughout the whole process. I am not "back" I don't think I will ever be"back" but I plan to make this new normal as active and healthy as I can. It means more yoga and less cycling, and while it may not be what I want, I am here to enjoy it.. A tip for leg cramps: I have this roller bar i bought at Winners in the yoga lifestyles section, looks like a bumpy rolling pin and it helps roll out the throbbing. Which I didn't know was a side effect

  • watersup1
    watersup1 Member Posts: 2
    edited August 2016

    Thank goodness for this thread -- I've suspected Tamoxifen has been the cause of my athletic woes for a while.

    I've been on Tamoxifen just shy of two years. I'm very active -- runner, cyclist, yoga, hiking, etc., and turn 55 next week. I ran a 5K about a month after my lumpectomy -- in two bras -- and ran slightly slower than my middle-of-the-pack pace (something around 8:25). I ran another 5K the following spring (about 6 months later, after 8 weeks of radiation and then taking Tamoxifen for several months) and struggled through it, running about a 10 minute mile. I had every side effect from that drug you could name except blood clots -- night sweats, depression, weight gain, leg cramps, brain fog. Fortunately, I seemed to get past most of it after about 6 months. Exercise got me through it -- two-three days of weight training, running 1-2x a week, yoga 2-3x a week. But I've gained 10 lbs over the course of a year, am still slow as molasses running, and subject to Achilles/Plantar fasciitis issues (never had those issues before Tamoxifen). I'm also very sensitive to heat. Despite changing my diet and cutting out almost all junk food, I can't lose weight.

    Since starting Tamoxifen, I've lost most of my desire to run but I did run two endurance events: one is a 24-hour-relay race that I ran annually for 10 years. I ran a total of 32 miles, was the slowest member of my 6-person team and made it through wearing compression socks (highly recommend, they helped my Achilles issues). This past weekend, I ran a shorter relay and for the first time in TWO YEARS had a great run where I felt like my former self and could've run forever. It's inspired me to sign up for another race just to keep training.

    My biggest fear is being put on an AI. My oncologist says they'll consider that once I'm through menopause (I likely will be by next year). Ache-y joints and sore muscles?Great, that's just what we ALL need.

  • cckillingsworth
    cckillingsworth Member Posts: 2
    edited September 2016

    I have also been surprised about the limited amount of data on this. I've been on tamoxifen for 2 1/2 years and watched my running times and overall endurance tank rapidly. I had so much fatigue, I was beginning to wonder if I was having issues with depression. My oncologist (a woman and a runner) told me it had nothing to do with tamoxifen and I was just getting older. That just made me mad and motivated to find a way through this. I started getting serious about yoga with a lot of active movement, breathing exercises, cold shower therapy (sounds brutal, but it really knocks out the fatigue). I backed off on my long-distance running for six months and bumped up my cross-training (Concept rower) and weights). First, I added back shorter runs and interval training and couldn't believe how my energy was coming back. I'm now working towards longer runs again (six to seven miles right now) and have a goal to complete my first 50K trail run next summer. It's taken a lot of work, but after finally feeling like myself again, it's worth it!

    I suffered from many of tamoxifen's side effects including the muscle cramping. It really feels like this drug must block any estrogen from getting to my muscles and they are starved. My doctor says this is not true, but I know what I've been feeling. The good news is that my body seems to be adjusting in response to my focus on rebuilding core strength. Don't give up!

  • moderators
    moderators Posts: 7,888
    edited September 2016

    cckillingsworth, what a hopeful message! Thank you so much for sharing your experience with everyone!

  • tarheelmichelle
    tarheelmichelle Member Posts: 248
    edited September 2016

    cckillingsworth, you are my idol!

    Your doctor is wrong to tell you that lack of estrogen doesn't interfere with muscle performance. The truth is, estrogen affects our bodies in many ways, known and unknown. It is known that estrogen acts as a lubricant for the joints. I don't know the specifics. I can hardly imagine that it doesn't do something for the muscles as well. Scientists just don't know.

    I don't see the point in women suffering and losing their quality of life and suffering because of these medications, in what is supposed to be our prime in life. We are suffering three times over, once from breast cancer, twice, from loss of capabilities from the side effects, and third, from medical professionals telling us that we don't know what we are talking about!

    I am Stage IV and took tamoxifen as a treatment, not a preventive. I did not have serious side effects. I refused to take Tamoxifen after my Stage I, and would not do it differently, even with a recurrence. I had almost 4 good years without any drugs in me. We should not hesitate to complain when these drugs interfere with our lives, we must let our voices be heard. I often wonder how many women stop taking preventive drugs, silently, for fear of criticism from doctors or families. We deserve to feel good about ourselves.


  • cckillingsworth
    cckillingsworth Member Posts: 2
    edited September 2016

    TarheelMichelle, Thank you for your kind words and I admire you for making your own decisions and choices. You are so right. Doctors make this very difficult. Thoughts for your health and continued happiness will be in my heart.

  • Runner81
    Runner81 Member Posts: 6
    edited March 2017

    OMG, I am so glad to find this thread. I have been trying to figure out for a long time what is wrong with me. I have been suspicious of the tamoxifen, and now I am pretty sure it's the cause of a lot of my problems. I also am an athlete, mostly running but also swimming, weight training, and some yoga. The six months before I was diagnosed with breast cancer at age 51 I had run 6 marathons or ultramarathons and was in the best shape of my life. I felt great. I stayed as active as I could all during my cancer treatment, but I have never been able to return to anything like my former athletic fitness level. I struggle with a "shortness of breath" type feeling that I get while running, which makes me take frequent walk breaks. I don't get this feeling at all during normal activity, but when walking briskly or running I have to slow down to get my breath back. I had this at first while going through chemo, but this has never gone away. I was suspicious that Herceptin had affected my heart function as that is a known side effects of Herceptin, but an echo after treatment showed my heart function to be the same as before treatment. I'm thankful that I don't have the muscle cramps and joint pain that some of you are experiencing.

    I would certainly love any advice or words of wisdom from some of you.

  • barbaraw
    barbaraw Member Posts: 1
    edited January 2018

    I am a runner and I am on aromasin. I have gotten intense cramps or spasms in the past mostly the night after running. The other night I had the worst spasms I have ever had. I called them spasms because you’re so much worse than cramps. They starred in one full thigh and then go to various other muscle groups With no rhyme or reason to it. Usually pickle juice works discovered by my mother and my sister. But this time nothing worked and I tried gu which runners use to give a quick shot of electrolytes or sugar. Eventually was in both legs and it was so bad I passed out and then I almost called 911 because it was so excruciating. Eventually calm down. It’s scary because I live alone. Three days later my thighs are still sore from the spasms. I’m seeing my oncologist Tuesday and I’m not sure what to do. I also have ringing in my ears from too much carboplatin. In my Dentist just tell me three or four of my teeth are loose.

  • ksusan
    ksusan Member Posts: 461
    edited January 2018

    Cramps for sure. Legs, feet, sternum, arms. Recently, after around 2.5 years on Tamoxifen, I had noticed my stamina slipping despite taking (and in some cases helping lead) 6 Zumba classes a week. Makes sense that it might be from ever-decreasing estrogen.

  • Elem
    Elem Member Posts: 246
    edited February 2018

    I could not take the aromatase inhibiters as I was told it can cause bone deterioration very quickly and lead to full on osteoporosis. I am already slightly osteopenic according to the dexscan . I have read that thise sumptoms you describe are not unusual. By niw, I guess you have seen your Dr. and have more insight.

    I hope it gets better for you going forward. Take care ❤️

  • thirdgenerationmomof2
    thirdgenerationmomof2 Member Posts: 65
    edited April 2018

    Good morning ladies,

    Wow it feels good to not be alone on this topic. I just finished my 5 years on Tamoxifen, and have been severely struggling for the past 2 of those years. I brought up my concerns to my MO and he just brushed off my concerns as not being side effects of Tamoxifen. I’ve had leg/toe cramping and bruises easily from the very beginning of treatment. He told me it was not related to the Tamoxifen use (funny because I never had those prior to the bc).

    2-1/2 years ago I started an interval running program and 6 months after, is when things got really bad. Since then I’ve been dealing with major heel, top of toe pain, been treated for plantar fasciitis, shin splints, metatarsal pain and nothing has improved my condition. They first treated me for stress fractures in both feet (which MRI finally showed I did NOT have) then started p/t and treatment for the plantar fasciitis and shin splints. 2 years go by and I’m STILL in pain.

    Most days I feel like I’m 90 years old (I’m 46). My body aches constantly. What started in my feet has progressed to my calves, knees, thighs and now lower back. I seriously feel like I’m falling apart and have no quality of life because I can’t enjoy the small day to day things.

    I try to eat better and exercise regularly but even the exercise causes pain at times or causes me to injure other parts of my body. Doing yoga flares up pain in my back and puts stress on my feet and knees.

    I just stopped the Tamoxifen a week ago, after completing my 5 year treatment. I’m hoping and praying that once this medication is out of my body, I can get back to not living with chronic pain on a daily basis.

    So thankful to know I’m not alone, and that my concerns all along were valid concerns. Thanks for sharing your stories!

  • capecodgirl
    capecodgirl Member Posts: 93
    edited April 2018

    Thirdgeneration-

    Hoping for relief of your symptoms after finishing the tamoxifen. Keep us posted-- I am interested in hearing how things go post tamoxifen.

    I am also a runner. Was training for a half last year when I was diagnosed, so was not able to run that one. Since then I have run a 10K and a 7 miler (August and October 2017). Stopped running on doctors orders for 6 weeks after oophorectomy in November. When I started running again in late January I had knee pain. It also travels up they thigh and into the calf. To the point where I could not run, and still cannot. Also hand issues-- they cramp up at night when I sleep, or when I nap during the day. Uncomfortable, but not painful. Because of this, and overwhelming afternoon fatigue I am taking a break from the tamoxifen. I want to see if the symptons abate before my next MO apointment at the end of May. I am waiting for him to tell me it is not related to the tamoxifen, but I will see what happens.

    Best of luck to you-- hoping your aches disappear and your quality of life goes back to normal.

  • Runnermum
    Runnermum Member Posts: 346
    edited May 2018

    Hi everyone...also a runner who is currently taking Tamoxifen. I finished chemo in November, radiation in Jan and started Tamoxifen when I was half way thru radiation on Dec 31st. I have ran since high school ( age 47 now) and was training for a half last spring when diagnosed and was not able to run it after they nicked a vein during my MRI biopsy, my boob swelled to the size of a watermelon and I couldn't run due to the swelling for over 2 wks. I ran thru chemo (was very very slow) started adding mileage again between chemo and rads and am currently training for a half marathon in 3 wks. I am feeling pretty good on Tamox. Minor side effects are some cramping in my calves, a little joint pain, a tender Achilles at times and those dreaded hot flashes. I have been doing some acupuncture for the hot flashes and do think it helps.Nothing is keeping me from running and finding that the movement actually helps those side effects. I also do yoga and strength train a few times per week.

    Will be switching to Arimidex this summer after my oopherectomy.

    Wishing you all well and many happy miles!

  • Egads007
    Egads007 Member Posts: 474
    edited May 2018

    Runnermum, you could try adding some weighted squats and lunges into your routine...obliterated my cramping/feet problems (that were debilitating!)

    Too true that more movement brings relief. If I take a break from the gym the SEs creep back. I’m curious to see how I fair when I switch up to a AL in December

  • Runnermum
    Runnermum Member Posts: 346
    edited May 2018

    Thank you Egads...I do use weights and do squats and lunges with my strength training but am going to add more reps and see if it helps. Also drinking more electrolytes to see if that helps!

  • Paco
    Paco Member Posts: 53
    edited August 2018

    Joining this thread to lament my aches and pains due to TAMOXIFEN. I have developed an acute case of plantar fasciitis in the last couple weeks. The pain started about 6 weeks in to treatment and was a dull ache. Now, around 16 weeks in, it is full blown pain in my left foot. Ugh. It lets up after moving around a bit but it hurts every time I start out on a run and takes a good mile or so to abate. I hope this is one of those SEs that flare up and then subside. What a bummer.

  • Billb464
    Billb464 Member Posts: 20
    edited August 2018

    I find that interesting since I have been having the same problem with my heel. I started having problems about 3 weeks ago! I’ve been on the tamoxifen since April with minor muscle pain, but this has made it harder when I exercise. I did get the special shoe inserts for planters facitis and put them in my running shoes. It has helped a lot, but still have pain when I get up in the morning. I agree with you, hope this is a passing SE

  • Triathlete
    Triathlete Member Posts: 3
    edited January 2019


    Calf issues, Iron Man training and tamoxifen


    This is my first post and I must admit I'm not very big into social media, I don't even have Facebook. I'm 52 years old and was diagnosed with stage to back in October 2014. I underwent a mastectomy, chemo and radiation. I am very athletic and “ran" two ironman during my chemo treatments… My way of saying “F you”to cancer. Prior to cancer I had done 35 marathons and 2 ironman races. Six months after I finished treatment, I again started doing Ironman. Since then I've completed six more Ironman despite the ever present tamoxifen issues. I've learned that no amount of quinine or electrolytes in coconut water will stave off the middle of the night calf seizures which brings me to tears. These Calf seizures have almost drowned me in the pool or in the lake- thank God for the buoyancy of wet suits! Calf issues have forced me to call for a ride home numerous times while out for a run and unable Take one more step because of the excruciating pain of a calf seizure. I've suffered intense plantar fasciitis Perineal tendinitis. I've learned to swim without kicking because the kicking seems to exacerbate the calf seizures. With all that being said I've refused to stop doing what I love to do because it is my way of life and I will not let cancer take that from me. However, I once again have limped my way home this from a run this morning because of a calf seizure. I have gone through numerous MRIs ultrasounds and countless other test with my orthopedic and my oncologist and no one has been able to come up with an answer as to how to control the deabilitating side effects of tamoxifen. I have registered for two more Ironman this year and have a few more weeks before I need to start training. I'm hoping that somebody might have found something that works to limit or at least lessen the frequency and the intensity of the calf issues experience by so many women ontamoxifen. My doctor has recommended a 10 year protocol so I should still be on it another six years. I don't want to stop taking it because I am so fearful of a reoccurrence but I can’t continue to pursue my athletic passions while still experiencing the side effects of tamoxifen. Can anyone help ?

  • Runner81
    Runner81 Member Posts: 6
    edited January 2019

    Triathlete, I can't really help, but I commiserate with you on the effects of tamoxifen. Before cancer I had run 40+ marathons and ultramarathons. I am now a shell of my former athletic self. I am still trying to shuffle through a couple marathons a year, but I am so slow, and it is so much more difficult for me now. I feel like I aged 10-15 years in a period of like 2 years. I don't have the severe calf cramps like you, but I just have a general muscle fatigue / pain all over that really limits me, and I also have a shortness of breath feeling (I've had echos done of my heart, and there is nothing wrong with it). I just keep shuffling along because, like you, I want to keep getting out and trying to be active like I use to be. I just do what I can and try to accept what it is. I hope you can find a way to continue doing what you love doing.

  • Andraxo
    Andraxo Member Posts: 168
    edited January 2019

    Runner81 - I feel the exact same way....a shell of my former athletic self. Just can't do what I did before despite doing it ALL through chemo and rads. What is different now? Tamoxifen. My muscles feel "dead" much of the time and don't recover well. I'm currently 2.5 weeks into a 1month break from it to see if it is Tamoxifen, menopause, or just getting old. I'm going to take 6 weeks off though. I may never go back if I feel great. It takes 2 weeks just to get out of your system because of the 5 day half life. My muscles already feel better but still having joint pain. I suspect some damage has already been done to my joints, especially knees. I was also plagued with sports injuries the first 1.5 years on Tamoxifen (been on it 2.5 total). This just sucks. I only had bad muscles cramps (mostly calves like Triathlete) the first 6 months and that got better. I take Magnesium, but also because I had a bad muscle/tendon reaction to Levofloxacin antibiotic taken prophylactically during chemo when I was traveling out of the country. I read I should take magnesium for a loooooong time.

    I still keep plugging away, but there's not as much joy in sports because I'm not performing as well as I want no matter how hard I try/train. Sure I'm happy to be alive and still able to participate in the things I love, but is it so bad to want more?

  • Falconer
    Falconer Member Posts: 801
    edited January 2019
    Hi Fit Friends, I am no marathoner but I have been a distance runner my whole life. Along with running I have a regular yoga practice and am a certified yoga instructor. I feel your pain as well and am glad to know I'm not alone as Tamoxifen atrophies my muscles. I can visibly see the change and it is disheartening and frustrating. Like you, TriA, I drink coconut water to try to stave off muscle cramps. My MO suggested wearing leg warmers at night. I've been doing this for about two months and I've had no nighttime cramps. That doesn't mean I'm scot free. Last night one started as I was climbing down from the loft after putting my five year old to bed. My MO also recommended tonic water. Haven't gotten around to that as I might want the gin to go along with it. JK. Alcohol just exacerbates the hot flashes. Best to all of you- I know how hard it is to experience these changes. Check out the daily exercise thread for more info. Like y'all, Those women rock.
  • Egads007
    Egads007 Member Posts: 474
    edited January 2019

    Hey all,

    I had the insane calf/foot spasms...so bad that I've watched as my calf muscle involuntarily flipped around and back again, leaving me limping for a week. My feet would spasm into pretzel shapes...or when lucky, would only ache like a baseball bat had been taken to them after simply walking half a block (basically hobbled). Magnesium gives us a 50/50 chance of relief, but I wasn't one of the lucky 50% (although it vastly improved my sleeping patterns)

    Then I started weight training. After 2-3 weeks of daily squats and lunges (body weight in the beginning working up to added weight with dumbbells or universal bar) all the issues started to fade. At the 6 week point I was muscle spasm & foot ache free...like ZERO.

    I'm convinced it's the squats and lunges because whenever I take a gym break (2 week vacation etc..) it all starts creeping back.

    I've made a few instructional posts over in the Paleo thread giving novice up to advanced level samples with vids...if anyone is interested I'd be more than happy to send through PM or post here. Might be worth a shot...muscle issues from tamoxifen absolutely stink!!

  • Triathlete
    Triathlete Member Posts: 3
    edited January 2019

    Wow!!!its so great to see that I am not alone and that there are other female athletes out there who refuse to let tamoxifen take away who they are. Runner81 we will both continue to find a way to do what we love to do I'm sure you are, like me a fighter; Will fight through the tamoxifen the same way we fight through the miles!! I may not be as fast as I was before cancer play but going through the endurance event of cancer treatment has definitely made me stronger in many ways. I've always said we don't choose our path in life, that's God's job, but we do decide HOW we will go down that path and I will be running,swimming and biking down that path each and every day that I'm alive! To me it's all about quality of life and at this point I feel like tamoxifen is just interfering too much with my quality so, like Andraxo, i’m taking a break from tamoxifen. I start training for my next ironman in a few weeks and I’ll see how I feel physically and emotionally about being off the tamoxifen and make a decision then. Again, thank you for all of your post, it really is tremendously reassuring to know that there are other women facing the same obstacles

  • Andraxo
    Andraxo Member Posts: 168
    edited January 2019

    Update at 3wks, 2 days OFF Tamoxifen. My muscles are even better! Friday I ran 5 miles in packed snow. I then snowboarded 2 days in a row (Sat-Sun)at 10k elevation in powder - Yay! Sunday I also ran 5 miles before snowboarding. Monday I ran 3 miles as recovery. There is absolutely no way I could've done all that in a row on Tamoxifen. My days of doing long runs and long mtn bike rides, and training for mountain events at altitude have been long gone on Tamoxifen. Sure I'm sore today but my legs didn't have that dead/fatiguedfeeling over the weekend - the feeling that for the past couple of years kept fom pushing or sometimes even participating at all and thus used to keep me from getting sore (if that makes sense). Sore is welcome! It was also my first days in powder on a snowboard this season. No change in joint pain though. That is likely multifactorial (menopause now, at age 49) or just needs much more time to see a difference. The biggest change though, is mentally. I didn't realize until this week how much it was affecting my temperament. I was cranky and tired on Tamoxifen. Now I find myself feeling almost euphoric again and back to my goofy, animated, energetic self. I'm singing again...stupid little rhymes and songs I make up on the spot about my dogs, my spouse, etc. Silly things! I don't think I've made up those little songs in a YEAR! Maybe it is also because I can exercise better and that always affects my mood. Oh, and my skin is oily again (I'm Italian) which is also welcome. :)

    When I see my oncologist in 2.5 weeks we will discuss my recurrence risk both on and off Tamoxifen. I suspect though, that will not be going back on it. I'd be willing to try a lower dose (5mg like that new study done in Italy which isn't published yet - it compared 5mg to placebo) but I know she will say there isn't any published research to support it...which is true. Someone needs to compare 5mg and 10mg to the std 20mg dose - and those types of studies take at least a decade to just perform and then more years to publish and have it become part of prescribed practice assuming a change. Unfortunately research like that isn't available now and isn't going to happen in any time frame that helps us suffering now.

    Happy Tuesday everyone! - xo

  • Triathlete
    Triathlete Member Posts: 3
    edited January 2019

    Andraxo, I am so psyched for you! That's so awesome that you were able to jump right back into running and boarding! And I’m sure tired fatigue sore muscles or actually a relief and welcomed. Thank you for sharing your update. Keep singing a little silly songs and enjoying every moment of life !!

  • Andraxo
    Andraxo Member Posts: 168
    edited January 2019

    Thanks Triathlete!

    I've been doing those things all along (through all treatment and in the years since), but now they feel better to do and I can do them back to back...and that is awesome!!

    If my MO won't agree to lower dose, I'll just do it myself anyway. Some people have fewer side effects on a lower dose. If I can keep my head and muscles happy, then I'll be happy too!

    - xo

  • exercise_guru
    exercise_guru Member Posts: 333
    edited January 2019

    You might want to look into consuming beet juice and other nitrous oxide producing vegetables. search nutritionfacts.org for beet juice etc

    Beet juice and athletic endurance

    How to Use Canned Beets to Improve Athletic Performance

    Whole Beets vs. Juice for Improving Athletic Performance

    This article hypothesizes that tamoxifen and the loss of estrogen might decrease blood flow in the peripheral. Leg cramps associated with tamoxifen use – possible mechanism and treatment recommendations

    Regardless if you look at the articles it would be a good pretraining addition.

    I am using it to help with peripheral neuropathy and it is really helping me with circulation issues post treatment.

  • Andraxo
    Andraxo Member Posts: 168
    edited January 2019

    Thanks exercise_guru! Great stuff! bonus that I love beets! No muscle cramps, just tired legs when on Tamoxifen, but I'll try having more beets for a while if any chance it may boost my performance. I don't think I could get myself to eat canned beets though, I'd go for fresh organic. Glad to hear it is helping with your peripheral neuropathy!

    - xo