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Runners and other Athletes on Tamoxifen

245

Comments

  • sbaaronson
    sbaaronson Member Posts: 121
    edited November 2012

    I am a little late in contributing but I thought I would add my two cents. I have been an athlete my whole life. I am just about at the 2 year mark on Tamoxifen, below are my thoughts:

    I have far fewer, and far less intense side effects when I stay VERY WELL hydrated. I mean, you should never feel thirsty, ever... The side effects seem to come along and dissipate. There is no rhyme or reason to this. I am currently in the midst of having terrible joint pain. Really, this must be what it is like to be a 90 year old woman. I have just started, in the last 3 days gluten and dairy free eating. A trainer at the gym thought if I could get the overall inflammation down in my body, it might carry over a bit to the joints. Worth a try, I'll keep you posted. I also saw a good Integrated Oncologist at UCLA when I thought I couldn't stay on the drug - she gave me some herbs and supplements that helped.

    Regarding the weight gain. Without a functional hormonal system, I think it is very difficult to burn fat. BC treatment put 15 pounds on me. It was slow going and very difficult to get it off. Turns out there is something to that old song, the ankle bone is connected to the shin bone. You mess with such an efficient system and it just won't work as efficiently.

    I had a total meltdown about going on this drug. The 5 years loomed so large. My best friend told me to take it in 3 month blocks - that's how I make it work, physically and mentally. And, when I am in real pain, I take a Vicodin (given to me by my MO) or smoke a little pot (prescribed by the very same). For all of us, it's about co-existance with the side effects. The science behind (taking) it is solid.

    -Stacey

  • Spinnerpom
    Spinnerpom Member Posts: 55
    edited December 2012

    I am really grateful to all of you for contributing to this thread.

    I am just beginning to experience the dreaded weight gain, after keeping it at bay for the first six months.  I'm irritable and exhausted and hit the snooze button this morning instead of getting up to run the Jingle Bell run I had registered for.  I wake up hobbling from stiffness most mornings with my eyes feeling like I slept with them open (thanks again, tamoxifen) assuming I slept at all.

    I suppose there is small comfort in feeling like I'm not alone, and when I start feeling sorry for myself (like the little pity party I'm having right now) I think about how many of you went through far more than I did and I try to feel grateful.

    LOL...it's not really working for me tonight.  ((Hugs to all my "sisters".))

  • coraleliz
    coraleliz Member Posts: 158
    edited December 2012

    Spinner-" I think about how many of you went through far more than I did and I try to feel grateful". I know what you mean. I'm trying my hardest not to throw myself a pitty party. My foot is killing me!!! I went to the gym today & all I could do without pain cardio-wise was the recumbent bike. I've never felt sooo oooooldYell. I'm going to call a podiatrist, who is also a runner, in the morning. I'm going to try a cortisone shot even though several years ago it didn't help me. My foot is much worse this time. I work 12hr shifts as a nurse & barely make it through my shift from my PF pain. I haven't run since Feb & despite doing less I hurt more.

    My MO told me I could reduce my Tamox dose to 10mg. Originally I didn't like the idea because I couldn't find info/studies on the lower dose. I'm reconsidering this at this point. Coming up on the 1 year mark of no running for meFrownFrown. Just not sure how long I can stay optimistic. You can always run a mile or 2 for me? Take care

  • Spinnerpom
    Spinnerpom Member Posts: 55
    edited December 2012

    Coraleliz, I'm so sorry you're having such trouble with the PF.  Check around and see if anyone in your area is doing this treatment:

     http://www.inyourstride.net/cryosurgery-plantar.html

  • Natters
    Natters Member Posts: 19
    edited December 2012

    Compared to the side effects I experienced during rads, Tamox doesn't seem so bad. I've been on it for nearl,y 15 months now. I had a really rough time coming back in my sport after rads but i would say i was almost back to normal after maybe 8-10 weeks. However, I got cramps so badly this year that I started taking potassium pills and even went to see my PcP. She ran a bunch of blood tests and couldn't find anything wrong. Unfortunately, they tend to occur when I'm doing 2 of my favorite things: sprinting in my outrigger canoe and having sex. :( I I also had some foot pain once this Fall while training for a half (I run to cross-train) but that resolved in a couple weeks and a I had a great race for someone who hadn't run as consistently. I never realized Tamox could be making the cramps worse. When my MO asks, I used to just complain about the irregular periods and night sweats. But believe me, when I go back to see him in Feb, I'll be asking aout the cramps! It doesn't sound like he will be able to do much for me, based on what you're all saying. Also, I can totally relate to them not knowing what to do with younger, very active women. My RO thought I was crazy for wanting to continue to work ut during rads. His words, "you're not going to want to wear a sports bra once we get started." I was like, WHAT?! They don't realize how much quality of life we lose and what a big change it is for those of us that work out or train 5-20 hours a week to suddenly not have that in our lives...

  • coraleliz
    coraleliz Member Posts: 158
    edited December 2012

    Spinner- I'll keep the cryosurgery in mind. I'm currently trying myofascial release(graston method). It hurts, but I'm hopeful. Two treatments so far.

    Natters- I've had some success with alleviating leg cramps with compression socks designed for runners. Even if I only wear them for a couple of hours around the house in the evening, I find I have almost no cramps during the night. The other is using a 6" foam roller to my calves http://www.runnersworld.com/health/foam-rolling-runners .

  • Spinnerpom
    Spinnerpom Member Posts: 55
    edited December 2012

    I have been wearing compression stockings sometimes during the day. My med onc wrote me a prescription for them because the tamoxif*ck was causing my (normally beautiful and thin) ankles to swell like old lady cankles.  My legs always felt really good on the days I wore them, so I bought a pair of compression running socks and I really like them. I have not done any long distances with them yet (it's getting to be winter running season and I haven't really gotten myself mentally prepared for the cold yet) but I am hopeful that they will help with the cramping.

    Oh, and here's a synposis of the things I have tried for cramping, most of which have a sound medical basis:

    • magnesium supplements (usually combined with calcium but I think you can get it on its own)
    • coconut water (eletrolytes and potassium)
    • tonic water (quinine)
    • S-caps (sodium/potassium/electrolyte capsules) http://www.succeedscaps.com/products/s_caps/
  • Joanne_53
    Joanne_53 Member Posts: 714
    edited December 2012

    Spinner,

    I take 250 mg of magnesium .... I was having restless leg syndrome and hat seems to help. If I am on my feet a lot ... Like hosting Christmas dinner ... Then I have found I get muscle spasms in my inner thighs ... OUCH. Someone suggested potassium for that besides to ic or coconut water.

  • Crescent5
    Crescent5 Member Posts: 64
    edited December 2012

    "tamoxif*ck" Love it! Tongue Out

    Glad some of you are finding some relief. I don't have anything to add right now, but I had to note my pleasure at the name.

    I'm back to hobbling, limping and grabbing on walls to get to the bathroom first thing in the am. =( The cold weather is not terribly kind to tamoxif*ck users. Hot flashes are bad now too. Anyone know how many calories a hot flash burns? Ha!

  • Spinnerpom
    Spinnerpom Member Posts: 55
    edited January 2013

    Oh, if only they burned calories!!! I had one SO BAD last week I thought my neck was going to spontaneously combust!  And my husband has taken to warming his feet on my back in bed.  LOL.

    I just bought a pair of Yak Trax today; I'm thinking cold weather running might be quite enjoyable.  

  • Kay-in-NH
    Kay-in-NH Member Posts: 9
    edited January 2013

    Hi - I'm new to this site (was on Bottle O' Tamoxifen for awhile).  I'm a casual runner at this stage of my life (age 54), and ran 2x to 3x weekly for the first 5 weeks of Radiation, before hitting the wall.  The incredible fatigue worsened and persisted about a month after completion of RAD's, then the dreaded Tamoxifen began.  The first month, I had some leg cramps (although I admit to occassionally having them at night, before Breast Cancer), but these went away.   Then the hot flashes & night sweats began.  The MO said they'd subside after a while... well, it's been awhile, and they are intensifying.  I haven't regained my prior running stamina and pace, but heck, after what our bodies have just gone through, it's no wonder!  And I ski more than I run during the winter.   I did not require chemo (early stage, 1+ cm, grade 2, 0 / 6 nodes, oncotype 19).  My MO said she could prescribe an anti-depressant to alleviate hot flashes... this is bizarre, and I'm skeptical of trying this, as I'm currently very balanced (mentally), and would not want this chemistry altered.  Anyone have any similar experience? 

  • coraleliz
    coraleliz Member Posts: 158
    edited January 2013

    Kay-being active & outdoors is what keeps me sane. What antidepressant does she want to put you on? Some can interfere with the metabolism of Tamoxifen. It looks like you've only been on Tamox for about 3months. Some of your symptoms might still go away & some may go away only to return from time to time. My hotflashes aren't that bad. Somedays I have several, other days only 1or2. When that happens I start thinking maybe it quit working or the pharmacist gave me the wrong drug.

  • Deyrl
    Deyrl Member Posts: 5
    edited January 2013

    Effexor is used for hot flashes. I don't know if other antidepressants are.

  • karen808
    karen808 Member Posts: 1
    edited April 2013

    I am a 3 year BC survivor and experienced rather intense leg cramping when I trained for a marathon last year. I never got them on my short training runs, but as the weeks progressed and the runs grew increasingly longer, I started to experience extremely painful leg cramps. I had symptoms similar to yours, with cramps starting in one
    spot, then traveling to other areas of my legs. I experienced these cramps
    until I discovered Endurolytes at my local running store (Runner's HI).
    This is the only thing that worked for
    me to prevent the cramping. I have taken Tamoxifen for 3years and
    battle weight gain, as well. Check with your Dr to see if ok for you to use this supplement.

  • MsRef
    MsRef Member Posts: 2
    edited May 2013

    I am so happy to find this thread so I will keep it moving. Newly diagnosed and feeling like my head will explode with all I've read and researched about what my physical future looks like.

    I'm about to start Tamoxifen next week and I am very concerned as well about the effect on my body. Night sweats and hot flashes I can deal with. Have a little of those already and since we are used to sweating buckets and that makes us feel good, I'm not overly concerned.

    You've all offered good discussion and I will ask my MO about supplements. I'm also meeting a naturopathic doctor and see what she has to say.

    I wonder what it is about this drug and the lower legs? You all seem to comment about lower leg/foot issues. No quads or low back or arm pains?!?!

    I've recently had a tear to my calf (before Dx)so looks like good hearty warm ups and more yoga will be in my future along with my CEP socks (which are well worth the money) and do make your legs feel great.

  • happyraccoon
    happyraccoon Member Posts: 105
    edited May 2013

    Six months on Tamoxifen now.  I gave up walking and running two months ago because it hurts too much.  I know I need to keep walking to maintain bone strength and joint flexibility.

    BUT

    I think I would have to have king-sized pillows duct-taped around my running shoes just to get past the mailbox.  The ball of my right foot feels like there's been an arrow through it night and day.  (whine whine)  I'll get some very slow gentle walks in soon.

    However, I am swimming a mile 5 times a week or more.  This feels great unless I overdo it.  Paddling was good for a few weeks until my SI joint started to be a chronic pain.

    My new life means appreciating what I can do.  Respecting that.  Doing it with all my heart.  If I need to make another change, I will.  For now, I'm just glad I'm so happy in the pool.  I'm glad the time to swim is now.

    PS.  My running friend was miserable on Tamoxifen.

  • happyraccoon
    happyraccoon Member Posts: 105
    edited May 2013

    MsRef, you asked about arms, etc.  I think my fingers and wrists hurt because of tamoxifen.  If it gets up to my elbows, I just make myself lie down.  It feels almost like the flaring up is related to whatever my hormones are doing.  (I'm 43.)  But if I am careful swimming, AND MAKE SURE I STOP if it starts to hurt even a little, my body recovers in a day or two.  The pool seems to be the best place for me to build muscle strength and cardio-vascular fitness without pain. 

    For a while there at first I tried pushing through the pain and that totally backfired.  Lifting heavy pots and pans or boxes or whatever also doesn't work sometimes.  I try not to get mad about it because then I'm weak and mad instead of just weak.

    I have a few sports injuries (osteoarthritis) that hurt worse/faster on tamoxifen.  I just take it as a message to slow down and respect my body a little more.  I want these bones to last a long time!! 

    I know a woman who is a 30+ year survivor of breast cancer.  She never had a recurrence.  I would like to see that happen more often! 

  • Buddhahead
    Buddhahead Member Posts: 19
    edited May 2013

    Just have to add a big THANK YOU!! to all of you who have posted here and to spinnerpom for starting this thread. I thought I was going nuts or just really out of shape when a 5 mile run now feels like a 15 mile run. I've done a few marathons and many tris and been active (like most of you) at least 6 days a week. Before being diagnosed I was in the best fitness of my life. I did my best to stay active since -- I ran on chemo, I ran on rads, but I think it's this tamixof*ck (love that btw) that's causing fatigue. I'd like to go off of it just to see. I agree with whoever said the docs aren't used to active women. Sounds like most of us did all the "right things" before BC and got it anyway -- so now we have to double up and do it all to the nth degree. 

    I also had plantar fascitis and some calf cramps and now use insoles and stretch and roll  my feet when they hurt. They are tender most mornings. 

    I'm getting ready to start training for the Chicago marathon and I'm just a bit worried I won't be able to do all the training. I've been trying to build my base and it's taken me 3 weeks just to be able to run 6 miles and it's at a way slower pace than I was before. It just seems like I can't make the fitness gains I used to. I'm just hoping I can make them at all right now. Or, maybe my body just needs more rest between runs. IDK -- thanks for listening. It sure helps to know there are others out there facing these same issues. I may have to just realize my PR days are behind me and like someone else said have a post BC PR goal. 

  • Reddishegret
    Reddishegret Member Posts: 1
    edited January 2014

    I am an athlete (triathlon and mountain bike racing) and have been on tamoxifen for 9 months.  I noticed the leg cramps occur regularly whenever I exercise moderately or hard and long. Lately I have noticed that when my calf muscles are fatigued (during and after a long bike ride), I can see them constantly twitching.  I've found that magnesium can prevent and treat my leg cramps.  I use "Natural Calm" Mg powder orally and/or Mg oil spray, depending on how fast I need relief. I rub Mg oil spray right on the leg muscles immediately after a hard workout or race and take Mg powder orally every day that I exercise.  If I forget the Mg--I can get horrible cramps that occur anywhere in my legs and are sometimes so painful they make me cry. 

  • moderators
    moderators Posts: 7,887
    edited January 2014

    Reddishergret, that is interesting. Thanks for sharing! 

  • Annette47
    Annette47 Member Posts: 108
    edited January 2014

    Just now seeing this thread.  I usually run between 4 miles a few days a week, throwing in the occasional longer run (7 miles) if I can.    I haven't noticed many problems that I can blame on the Tamoxifen (for example, I do have bouts of plantar fasciitis, but had that pre BC - I think it's just getting older), but one thing I have noticed is that since being on Tamoxifen, I do seem to get dehydrated much easier, and that may contribute to the crampy leg muscles I sometimes get in the evenings - if I make an effort to stay hydrated, I don't seem to have that problem.   The other thing that has helped me is taking a B complex vitamin daily.   

    I find the idea of the Mg spray intriguing - I may have to look for that.

  • Hil66
    Hil66 Member Posts: 1
    edited February 2014

    I've been reading through these posts with great interest after putting into Google 'Does Tamoxifen affect exercise performance?'. This forum came up so I've joined up. I've been on Tamoxifen for two years now, and as far as menopause goes I've no idea where I am - my periods stopped, came back again, stopped again, just had a very minor one...and each time all my menopausal symptoms (hot flushes) stop as I guess there's still some oestrogen getting around! But as far as exercise goes...well, I'm a triathlete and since getting back to exercise after BC I have really struggled to perform as I used to. I take longer to warm up, longer to recover, have far more muscular aches and pains these days, and seem to have lost both strength and flexibility, especially in my hamstrings. I'm currently training for a  marathon and have been comparing my training and my times to where I was six years ago - I'm so much slower!! My weight is about the same, I'm doing all the usual intervals, tempo, long distance runs, as well as cross training to keep my cycling and swimming up. Yet I just can't seem to get my speed back which is depressing me! I don't want to try and justify this unless warranted, with my BC and the ongoing Tamoxifen, yet it seems that others suffer in the same way - which I think is something worth acknowledging. Keeping it all in perspective, and much as I would love to not be on Tamoxifen, I'd rather keep exercising as I do and accept that I can't do it how I used to, in the knowledge that Tamoxifen is preventing the BC from returning. There's always a compromise I suppose. In the meantime I'll keep on running...!

  • PattiTris1965
    PattiTris1965 Member Posts: 1
    edited December 2014


    Anyone have any updates they can share on this subject or can you direct me to another thread?  I have been on Tamoxifen since June 2013 and the hot flashes, insomnia, foggy brain and now eye problems are really getting to me.  I signed up for two half iron races next year and just yesterday I broke down because I don't believe that if I still feel like this that I will be able to get through the training.  Triathlon is what I love to do.  It literally saved my life, as I was on a path to self-destruction with alcohol, among other things.  I've been weighing the pros and cons of stopping the Tamoxifen - in fact I didn't take any yet today - I'm having a hot flash as I type this.  My quality of life is disintegrating because I no longer feel that my workouts cause any improvement.  I have a lot more pain and cramping but I never get that feeling of being truly FIT that I used to get when I ramped up my training.  I miss that.  That was why I got out of bed in the morning and looked forward to the really hard workouts.  I don't want to go back to being a "normal" person.  Okay, that's my venting for now....

     

    Patti 

  • SelenaWolf
    SelenaWolf Member Posts: 231
    edited December 2014

    As someone who has used physical activity to help deal with anxiety/OCD, I heartily sympathize with your predicament. Being active is a necessity for me and fortunately I have had few issues with tamoxifen.

    I have heard that, sometimes, switching your brand of tamoxifen can make a difference. If recurrence concerns you is there any reason why you can't try an AI instead?

  • Kathryn1964
    Kathryn1964 Member Posts: 1
    edited November 2015

    I am an avid runner, and have been for 40 years! I am currently 51, just completed 3 years of Tamoxifen, 7 more to go! Diagnosed with Stage II lobular breast CA , LN neg, ER+,PR+, HER2-, Had bilateral mastectomy with immediate reconstruction, no chemo (not effective for my CA based on my Oncotype DX evaluation), no radiation, just Tamoxifen. Work full time, mother of 3 teens 19,16,13.

    I have run 9 marathons and probably 20 half marathons and I am a very competitive runner. I was pre/peri menopausal when diagnosed at 48. I have not noticed a significant increase in leg cramps or plantar fasciitis, but I take 500mg of Magnesium daily. I have noticed a dramatic increase in generalized stiffness and fatigue. My running times have definitely slowed over the last 3 years, despite increasing my training program with more speed work and longer runs, so this is very discouraging. I am not sure if this is due to age or Tamoxifen. I like to blame the Tamoxifen!! In general, I feel like my running has slowed for cardiopulmonary reasons, not leg fatigue, although I had some issues in a half marathon last weekend with significant quad fatigue (but that may be due to having run a half marathon the weekend before as well). Not sure how much I can blame on the Tamoxifen in reality, but I wish I did not have to take it! I have not had any weight gain, but I run a lot (about 40 miles/week), strength train twice weekly and do yoga once weekly. I have regular massages, at least once/ month to help with the stiffness.I will look for any scientific articles on the effects of Tamoxifen on cardiopulmonary or muscular endurance. If I find anything, I will let you know

  • Goodie16
    Goodie16 Member Posts: 297
    edited November 2015

    After wanting to stop taking tamoxifen because it was causing my otherwise healthy body so many problems, my onc put me on the following supplement/herbal regiment:

    200mg/daily: Coq-10
    1200 mg/daily: Fish Oil
    1000 mg/daily: Boswellia
    500 mg/daily: Magnesium
    1.25 mg/weekly: Vitamin D

    SInce starting the supplements, the joint pain and stiffness have been manageable. I am a life-long athlete and also work a very physical job. I'm hoping to continue on with tamoxifen until my body goes into natural menopause. I'm 51 and was 49 at the time of diagnosis.

  • malonejen
    malonejen Member Posts: 20
    edited December 2015

    I have been an avid runner since age 13. I was diagnosed in mid-September at age 49. Currently undergoing chemotherapy, and may or may not have rads. They are advocating a bilateral mastectomy for me based on my CHEK2 gene which was recently discovered. Running and being athletic meant a GREAT deal to me, but my doctors are really pushing the Tamoxifen. My surgeon said yesterday, "Women in this area don't like it because they want to be slim and athletic." I said, "I don't care so much about being slim--but being athletic is a HUGE part of my life." I am really concerned. I want to live, but I want to be able to do the thing that I love and which reduces my anxiety.

    I had a tumor that I found myself after a clean mammogram six months earlier. After they did two lumpectomies they realized I had underlying DCIS that can't be removed. I had a high oncotype so the cancer was aggressive. I am halfway through eight chemo treatments.

    Why do the docs keep pushing the Tamoxifen on athletic women? Is it really the only way we can save our lives? I have two sons who are teenagers so of course I need to do whatever I can...

  • D_Witt
    D_Witt Member Posts: 2
    edited March 2016

    I am about to cry I am so happy I found this thread!!! I was running half marathons and training for a full marathon when I was diagnosed. I've been on Tamoxifen (devil pill) since August 2014. I started running again after my reconstruction in September 2015. My time is SLOWER and I get tired faster. My legs hurt and my feet cramp. It's so frustrating!!! Reading everyone's comments makes me feel so much better. It's not me! It's the Tamoxifen... And I know now why I can't lose any weight. Grrrrrr.... You guys rock. Just keep on doing what you're doing and don't quit. We are SURVIVORS and butt kickers!!

  • D_Witt
    D_Witt Member Posts: 2
    edited March 2016

    I am so glad I came across this. I am currently experiencing the same thing. It's good to know it's not just me.

  • bounce
    bounce Member Posts: 215
    edited March 2016

    This really is a wonderful thread and I am sure many people will be glad to read it.

    As a non sporty type struggling with fatigue and an achy body I keep berating myself for not just getting up and exercising. When I see how much Tamoxifen does even to athletes I don't feel as bad about myself. I just wonder how I am going to continue taking the Tamoxifen.