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Runners and other Athletes on Tamoxifen

124

Comments

  • exercise_guru
    exercise_guru Member Posts: 333
    edited January 2019

    andraxo I eat steamed beats to bring down my cholesterol and lower my liver markers ( its working on the liver markers still working on the cholesterol)

    then I eat fresh beats for the circulation and I do juice them with cucumber.

    I think I remember from those videos that number one for NO circulation was Beets. Okra was number 2 and kale was number 3. If I remember correctly.


    Oops updated because Here is the video rating vegetables by Nitrate content for circulation.

    It looks like its "eight out of the top ten are green leafies"

    1.Beet Juice

    2.Arugula (rocket lettuce)

    3.Rhubarb

    4.Cilantro

    I also eat Broccoli sprouts, mushrooms and ground flax but those are for Breast Cancer recomendations.

    For circulation I eat steamed beets and fresh beets and I guess I need to add Cilantro and Arugula. I try to eat a wide variety of greens everyday.

    Just as an adendum: I had pretty severe depression, ,muscle aches, insomnia and cramping legs on Tamoxifen. I had to go off it for a few months to get my liver enzymes down. At the same time I watched "Forks over Knives'" and radically changed my eating plan to 100% plant based whole foods. I did this because I was desperate to improve my neuropathy and to fix my liver enzymes because I was scared of it being breast cancer in my liver.

    Well the first thing I noticed after 4 weeks is my energy, I was able to get off of effexor and ambien, my liver enzymes returned to normal and I cut down my neuropathy by 60%. Now I am staying on this eating plan and trying to go back on tamoxifen. I will report back how it goes.


  • Andraxo
    Andraxo Member Posts: 168
    edited February 2019

    Saw oncologist last Friday. I told her how great I was feeling off Tamoxifen and that I just couldn't see myself going back on it. She was actually understanding and supportive. YAY! I asked about trying a lower does and then we had the whole discussion about how there isn't anything to support it (for invasive cancer like I had) but also that there isn't any study that figured out the lowest effective dose. She is going to talk to another oncologist who only tx breast cancer and get back to me. I just don't see why she wouldn't want me to try 5mg or 10mg. It seems logical that something may be better than nothing. of course if I do end up on lower dose and feel like crap again, that will be the end of it all.

    The unfortunate part of the visit was that a few days prior I developed redness on my cancer side recon (I have very small pre-pec cohesive gel implants; pre-pec best for athletic people). Had to get a stat MRI to make sure the implant is intact and it wasn't a reaction to silicone (though the implants I have cannot leak, it's like cutting a gummy bear in half - nothing leaks out). Anyway, MRI done and it is most likely cellulitis as expected, which is bizarre to develop now though. Also need skin biopsy more as a matter of protocol from the radiologist than anything suspected by the oncologist.

    Ran 8 miles Friday, hiked in the snow at 10k elevation Saturday, ran and snowboarded Sunday, ran yesterday, lifted and plyo today. Woohoo! Of course I have flared up my usual ortho problems but I'll take that over having dead muscles anf symptoms simialr to chemo brain on Tamoxifen! :) The energy difference being off T is incredible...back to my old self!

    - xo

  • beeline
    beeline Member Posts: 193
    edited February 2019

    Hi all, I wouldn't call myself an athlete, but I am an avid runner and just started tamoxifen. I went on my first run since starting, and noticed that my heart rate was through the roof. Has anyone else experienced this? Will it settle down? Should I be worried? Thank you!

  • Andraxo
    Andraxo Member Posts: 168
    edited February 2019

    Hi Beeline!

    How long have you been taking it? When was the last time you ran prior to taking it? Do you regularly use a HR monitor, or self check (for comparison) or was it just feeling like it was high? Was also wondering if you had stopped running for a bit, even a week.

    Assuming there wasn't a break from running, if it was me I would test it again and see if the same thing happens on the next run. If no, well then great, maybe just a weird day - and then test a third time. If yes, I would definitely back off and want to discuss it with MO ASAP. It all depends on how comfortable you are personally to run again to see what happens or if it concerned you enough the first time that you want to talk to MO before running again.

    I had not noticed any heart rate differences with running on T, but so many of us get different symptoms.

    Hope it turns out to be nothing! Happy running!

    - xo

  • beeline
    beeline Member Posts: 193
    edited February 2019

    Hi Andraxo, thanks so much for your reply! I wear a garmin running watch with built in monitor. It's not super accurate, but this was a BIG jump. I think you're right that the best thing to do is to try again. I have been running pretty consistently since finishing AC chemo in December, though nowhere near the distances or speed I used to (and I was never fast before so now I am really a snail, haha). I have noticed various changes throughout -- my heart rate was high after the first 2 doses of AC, then very low once I got 3 or 4 doses in to taxol. But I think you're right, I need to see if it's more than just a one off.

    I read back a bit and am glad to hear that your MO was ok with your decision. It is strange that she wouldn't at least want to try the lower dose. My MO mentioned it to me as an option before I even started tamoxifen because he'd rather I take something than nothing. I hope the skin biopsy results come back benign and you are able to continue with your incredibly active lifestyle!!

  • Andraxo
    Andraxo Member Posts: 168
    edited February 2019

    Thanks beeline! Skin biopsy clear as expected for cancer. Skin still a bit red, but getting better, not sure if I should start a different antibiotic or not. MO just agreed to lower dose (10mg), but I'm going to try 5mg and cut the pill. I'm also not going to start back on it for another few weeks. My joints are finally feeling better off it, which took 2 months. Of course I just flared up some foot tendonitis again because I lfelt so good that I pushed my all sports too fast. Now I need to not run for a week or so.

    AC chemo can affect your heart function. Be cautious! Did they do any heart function tests on you before you started or after you finished? Some women get monitored for a while. Hope your heart feels normal on the next run!

    I had TC chemo, 6 rounds. Thankfully no neuropathy from the Taxotere (similar to Taxol) but I also used super cold gel mittens and slippers to freeze my hands and feet during chemo every time.

    - xo

  • poopysheep
    poopysheep Member Posts: 9
    edited May 2019

    Hello all - I've been on tamoxifen since Nov. 2016 and recently took a couple months off just cause I couldn't take it anymore. I'm very active - ski and run 6 days a week. Lots of backcountry ski touring and long mountain runs. The two months off was amazing and I felt back to my old running self (used to run ultra 50K+ trail type stuff) but I went back on it and the first long run was so frustrating, back to struggling on the uphills and crushing fatigue. I started back on 10mg a day - was going to try that but even at the lower dose I'm just tired and grumpy. I'm considering just not going back on it at all. I did almost 2.5 years. Half counts right?

  • vl22
    vl22 Member Posts: 471
    edited May 2019

    poopysheep - I hear you! I quit after only about 9 months - my issue was severe joint and muscle pain and hot flashes around the clock. I tried a lower dose but it didn’t work. Tried different meds and herbal supplements etc - no better. My MO made some other suggestions, but she said she understood if I decided to just forego hormone therapy. I was in pain most of the time, which was making me depressed. And sleep was impossible.

    Once I made the decision to stop I never looked back. That is what you need to ask yourself. Can you not let it worry you? If you have a reoccurrence will you think it must be because you stopped?

    I finally feel like me again. I’m running, biking and happy. For me not being able to be active is not living.

    I just wanted to let you know that I get it

  • Andraxo
    Andraxo Member Posts: 168
    edited May 2019

    Same here VL22 - if I'm not able to be active then I'm not sure I want to be here. One can take it or not take it and still have recurrence. My 3 months off 20mg was super (after the first month of getting it out of my system), especially because it was snowboarding season and we had a ton of snow. It was my best season since pre-cancer. I'm back on 5mg 5 days/week since April 1st. I notice that I'm on it though (dead muscles), especially on hills like poppysheep, but not as bad as before. I'll give it a little more time to see if I can find the right balance. Maybe take 5mg every other day? two days on, two days off? I don't know, but I'm willing to try very low doses. If I'm still finding myself miserable, then I'll stop completely.

    - xo

  • poopysheep
    poopysheep Member Posts: 9
    edited May 2019

    I found an Italian study and article on it (on this site actually) regarding a low dose trial. The did 5mg a day for 3 yrs and the results were statistically similar to the regular 20mg/5yr trials. It wasnt for all types though. Another question i have is why tamoxifen doses aren’t dependent on individual body weight

  • Andraxo
    Andraxo Member Posts: 168
    edited May 2019

    Hey Poopysheep!

    There is a lot of info about why 20mg on the general Tamoxifen thread, but in a nutshell - it was all they studied. I asked the same about body weight. No one ever determined the lowest effective dose (could be lower for some, higher for others). That Italian study was more for prevention for people with DCIS, it wasn't for invasive cancer. So many people are trying lower doses now! It only comes in 10 and 20mg tablets and I've read that some oncologists won't write for 10mg because they don't want women splitting the pills for 5mg (and it's hard to cut a 20 into 4 doses). Others are taking 10mg every other day etc. Women are finding out what works for them for quality of life, which in my opinion is what matters most. Bravo to us!

    Injured my foot at ultimate frisbee last night. I barely played. I seem to get hurt every time (since cancer) and I'm cursing myself for even trying to play a couple of points. I love that sport but my feet can't handle it anymore and I wind up miserable and unable to run for weeks to months. dang it. bummed today.

  • map1002
    map1002 Member Posts: 9
    edited May 2019

    Wow! I just scanned some of these posts and I am almost in tears with a little relief. I started tamoxifen in Oct, 17, after chemo, lumectomy and radiation. I had lost 40lbs just prior to diagnosis, tried to continue the nutrition and workouts as best as i could during treatment. Did Livestrong after rads and felt pretty good before starting tamox.. Tried to get back to my previous routine in Jan and just struggled.. couldn't keep up.. Gained back all the weight in less than a year.

    Now, I'm back at the Y, and the struggle is REAL. I thought it was me just not feeling motivated enough or being lazy. I am going to set new goals and lower the bar a little for myself to get through this. Do I want to lost that 40lbs again, YES, will I be ok if I don't get that far, maybe... but at least now I know not to beat myself up so much and that this dammed drug is a factor... It all seemed so subtle...

    So I thank you all for sharing...

    One other thing, I've been having discomfort/pain in my wrists. I was attributing it to arthritis and getting older.. maybe its not? wow...

  • Andraxo
    Andraxo Member Posts: 168
    edited May 2019

    so sorry you're struggling too MAP1002. :( It is definitely real. sending big hugs your way! I hope you can find a good balance and figure out what works to be on the track you want.

    I wonder if active/athletic people notice it more that less active people? We push ourselves harder and know what it is like to exercise hard regularly and how our bodies perform. Maybe less active folks don't notice much of a difference in their muscles or exercise performance because they aren't challenging themselves that way on a regular basis? I read the general Tamoxifen thread a lot and the complaints there are not usually anything about one's ability to participate in sport/exercise. Of course our complaints will be dismissed when they aren't voice by the masses. My oncologist has never treated anyone with my level of fitness/activity.

    - xo

  • map1002
    map1002 Member Posts: 9
    edited May 2019

    I wouldn't call myself an extreme athlete... 10 years ago I did 4 sprint tri's. Loved it, had fun and felt good, but I am not a competitive person. Then peri-menopause started and on went the weight.. After turning 50, I'd had enough, joined a program called "The Max Challenge", a paleo-like nutrition plan coupled with 5 day a week fitness classes, (cardio and strength training). LOVED IT!! Lost 40lbs!! Felt great for a year, and then BAM diagnosis breast cancer, HER+++.

    Went through treatment while still working and working out/nutrition as best as I could..

    But when I was finished with treatment, I thought I was ready to hit the mats again at full speed to go back and lose that weight I had gained throughout treatment.. And I just couldn't keep up..It was very deflating..

    Now a friend and I want to try another Tri, again.. And I feel like I am starting from scratch, if not further back from 10 years ago.. (add 10 years and 30lbs.. sigh)

    I am trying to find my motivation...Its so easy to blame life and be lazy.... But I think now knowing it's not just me being self depreciaiting, I may get through this...

    thanks.

    hugs back. xox

  • edj3
    edj3 Member Posts: 1,579
    edited May 2019

    Really glad to find this thread! I'm an avid runner, coming off a rare pelvic fracture from over training last year--broke the inferior pubic ramus and my ortho said he sees maybe 2 of those a year. I had just gotten back to hitting 4 miles a run when bam--biopsy and breast cancer.

    I see my surgeon today for my follow up after the lumpectomy and sentinal lymph node surgery and I've got my fingers crossed I'm cleared to start lifting, running, etc.

  • kec1972
    kec1972 Member Posts: 71
    edited June 2019

    Andra, I was curious if you ever ended up going back on the tamoxifen? I have only been taking 10 mg daily and my muscles just don't feel right when I'm exercising...almost like cement! I stopped a couple of days ago and am curious to see how long it takes for them to feel normal again.

  • Andraxo
    Andraxo Member Posts: 168
    edited June 2019

    Hi kec1972!

    Yes, I went back on it at 5mg April 1st. After just a couple weeks even at the much lower dose I definitely noticed it starting to bother my muscles (that cement feeling you already know so well - as if they don't have any ability to push), so sometimes I would not take it on weekends....hoping it would help with the cumulative effect. By 8 weeks back on it some joint pain was starting again, which is odd because I never developed joint pain until about 1 year on it at 20mg. I also stopping taking it 5 days before my half marathon which was this past weekend.

    My half marathon was OK. Pretty much the same time I did for that course in 2016 a few weeks after I had finished primary cancer treatment (surgery, chemo, rads...and then had a mild case of shingles too) but before staring Tamoxifen. 1:58. I think that is the best I will ever do in this Tamoxifen world, even at a reduced dosage and frequency. I'll take it!

    I think my plan moving forward right now is to take little breaks from T when I think I need to, whether 1 week or a couple of months depending on my sports/athletic life and trips. I figure that is better than not taking any amount ever again. I'm sure my MO would prefer I take more, and consistently, but it is my body, my choice.

    - xo

  • kec1972
    kec1972 Member Posts: 71
    edited June 2019

    Thanks Andra! I think if I continue at all, it will be just 5mg. Something must be better than nothing!

  • Cmfnp04
    Cmfnp04 Member Posts: 1
    edited June 2019

    new to this group - just diagnosed in Feb w stage 1a - s/p lumpectomy LND- RT And MO would like 10 yrs Tam.... my quandary - I'm a competitive endurance athlete - and just qualified for Ironman world championships - soooo a few issues w Tam - 1.its a banned drug and I would need a medical exemption request - which I'm worried and really don't want to even take it ...

    2. I don't want it to change my athletic performance

    Anyone have success of taking it without changing their performance - since most I have read have had a decrease in their overall function and ability.

    Also has anyone considered removal of ovaries vs tam??

    Thanks so much

  • edj3
    edj3 Member Posts: 1,579
    edited June 2019

    I have just one ovary, am postmenopausal, dx is very similar to yours. My MO still wants me to take tamoxafin for a bazillion years. Like you, I'm leery b/c of the side effects. I'm not world class but running is my passion and at least right now I am not inclined to take the drug.

    Obviously YMMV, I don't know your risk of recurrence or your fear/anxiety threshhold about following your MO's recommendations. This is just where I am.

  • Andraxo
    Andraxo Member Posts: 168
    edited June 2019

    Welcome Cmfnp04! There aren't a lot of us on this thread and I think everyone here DEOS have problems with Tamoxifen affecting athletic performance. Those without problems probably wouldn't post, but I can't imagine anyone performing normally on T. Weird that it is a banned drug. I just can't see what type of enhancement someone could possible get from it. I have not considered oophorectomy because I still want some estrogen for bone health and skin elasticity. Without ovaries, one would be instant full menopause and then there are the problems that go with it. Being ER+ none of us are candidates for any hormone replacement therapy to ease such problems/symptoms.

    I am taking T at low dose (5mg) and taking a break from it for events. When I will stop depends on the event. When I trek in Nepal next May I plan to be off it for at least a month prior to leaving and then will be off it for weeks of trekking. I'm only back on it for 10 weeks now after a 3 month break and if my crappy msc/joint issues return like it was when on 20mg for 2.5 yrs, I'll just stop. Like edj3 said, you have to find the balance between your quality of live physically and you quality mentally with respect to fear/anxiety about recurrence. When I first started taking it I freaked out if I missed a dose, which happened maybe twice in 2.5 years. Now I purposely don't take doses.

    Do they drug test you? And do you know the timeline for testing? Is there enough time before the Ironman to experiment with seeing how long it takes to get out of your system after taking it for months then stopping? (blood tests. You could consider trying it to see how you do on it, and them stop/take breaks as needed for your competition schedule. Or maybe you just don't even start it until after the Ironman. Your oncologist won't like any of it, but it is always your body and your choice. Good luck!

    - xo

  • kec1972
    kec1972 Member Posts: 71
    edited June 2019

    I agree with Andra, even my oncologist didn't recommend ovary removal since it "would make you extremely unhappy". LOL. Maybe when I reach my 50's in 5 years, I'll consider it to reduce my risk. but right now I think there would be too many other health issues that ovary removal would prompt.

  • GenX
    GenX Member Posts: 15
    edited June 2019

    Another athlete, early-40's, newly diagnosed ER/PR+ gal here (IDC stage 1). Lumpectomy/sentinel node "biopsy" (lol, they're removing it, why the euphemism?) tomorrow, actually. Then my treatment team has recommended a global 4-6 weeks of radiation, which I hope gets revised to targeted or shorter duration when/if nodes and margins are clear. Then Tamoxifen, for 10 f-ng years. It definitely concerns me to see that no athlete has responded in the positive to Tamoxifen, that athletic performance wasn't affected :(

    I took birth control pills for 27 years - childfree by choice - and of course stopped the day of my BC DX, 3 weeks ago. I want to believe that 27 years of synthetic estrogen in my system has to have contributed to my IDC. I don't have a mutation of the BRCA gene and we'll see what my Oncotype testing reveals but man, I'm really hesitant to even try Tamoxifen. I may start out on a 5mg dose to see how I do but 20mg for my 125lb low body fat frame, thanks but no thanks. I'm VERY in tune w/my body and sensitive to tiny disruptions...probably why I found my 5mm tumor (oh, and having little boobs helped, lol).

    Do they approve/encourage any hormone testing? I feel like no one mentions that, and I'd want to know (in my particular case) if my levels of estrogen & progesterone production were low enough now that I no longer take the pill...low enough to justify not taking Tamoxifen. Or to see if any diet changes could lower the levels to an acceptable point. Is there data on what's "acceptable" or is it simply that if you are premenopausal, you are going to produce too much estrogen as a rule?

    If you're on this thread I'm sure you can relate - hard to imagine making sweeping lifestyle changes when your lifestyle prior to your DX was highly active, healthy, fit body composition (can always be a little leaner), good food consumption (it can always be better, but I'm mostly grain-free/whole foods only already). I have already made some changes for the better, but we're not in that camp of had poor health/fitness/diet prior to DX here on this thread (which is good for us, for sure), so not as much available to change.

    Sorry, this is a bit scattered but I'm glad to have found a group of women talking about what I've been concerned about as an athlete and with excellent quality of life prior to (& during, really) DX.

  • edj3
    edj3 Member Posts: 1,579
    edited June 2019

    Hey there GenX, except for our ages, we sound a lot alike. I too have IDC, stage 1A, left breast, etc etc etc. I didn't take birth control pills b/c they messed me up (gained 30 pounds when I tried, lost it ASAP when I stopped). I was a high estrogen producer all by myself.

    My treatment plan called for lumpectomy, sentinel node removal (in my case, just the one), I had clear margins, node was clear. My radiation plan is 20 treatments, with the last five being boosts (today will be 14). So I didn't get the five+ weeks of rads.

    Since I'm postmenopausal, normally I'd be up for the AIs but I fractured my pelvis last year from overtraining & racing (ok ok a lot of racing) and it turns out I have osteopenia. So my MO wants me on tamoxifen, but I'm not sure I will do it.

    Like you, quality of life for me includes being able to stay fit and competitive. The side effects of tamoxifen sure seem to contraindicate that.

    I meet with an endocrinologist at my MO's suggestion for the osteopenia. I meet with the MO after that and I will have a lot of questions for him, including dosage options. I've got a race in early September and for sure won't start anything before that. Running that race has a whole lot of meaning and importance to me now.

  • GenX
    GenX Member Posts: 15
    edited June 2019

    Damn, edj3, that's some hard charging, fracturing your pelvis. Big respect to your drive! You're like me, too much, too hard :)

    I think we all have to research, question, communicate, and ultimately decide based on, as others have mentioned, our own specific set of circumstances and risk tolerance. I will most definitely be pursuing hormone level analysis pre- and post-tamoxifen, it's as simple as a blood test, from what I can gather.

    Now that I'm post-surgery (2 days ago), my paradigm has shifted from surgery anxiety to 1) impatience with getting past the post-op pain (grr, the sentinel node "biopsy" aka removal pretty much sucks) and 2) considerations for living cancer-free for a very long time.

  • edj3
    edj3 Member Posts: 1,579
    edited June 2019

    Oh the sentinel node part was/is the worst. Will you have radiation? I'm in that right now, 15 down and five to go. Things are pink, tender and annoyed (my breast looks like I have measles) and just as with the surgery, my incision in my armpit is the most annoying part. On my run yesterday, I probably looked a bit like a chicken--had my elbow out just a bit so I didn't make it worse.

  • HopeBry
    HopeBry Member Posts: 64
    edited November 2019

    My surgeon prescribed levofloxacin antibiotic after surgery and since taking it I have really bad joint pain in my legs and my fingers hurt. I can sit for a few when I get up Im cramped and limping like the elderly. I pray it goes away. I dont know what I can do to be rid of it. Feels like I have arthritis.

  • Andraxo
    Andraxo Member Posts: 168
    edited November 2019

    Oh no HopeBry! I struggled for years after getting that antibiotic during chemo. Tendonitis everywhere, muscle fatigue, joint pain, leg swelling. The first few weeks being the worst. I hope your resolves much faster! Be VERY cautious with anything involving impact (running). That drug has a black box warning for tendon rupture. I read many blogs about side effects from it and what people have tried for relief (you can search this on-line, some people call it being 'floxed'). I've been taking 800mg magnesium ever since. I also have it listed as an allergy now and will not take it again, nothing in that class of abx (fluoroquinolones). Highly suggest you do the same - don't allow anyone to give that ever again.

    - xo

  • Annielikestorun
    Annielikestorun Member Posts: 1
    edited February 2020

    Gosh I’ve just been reading lots of comments about leg cramps and tamoxifen. I thought it was just me! I’m training for Paris Marathon this spring and have just come back from a training run almost in tears. I should have done 17 miles today but calf tightness and pain crept in at 5 miles and I could only manage 10 miles. I’ve run 4 marathons before cancer treatment and never experience this. I’ve been on tamoxifen for 3 years now. I feel I want to prove to myself I can still do this but boy today was just awful and that’s when I searched ‘running whilst taking tamoxifen’ to find out that I’m not alone. I guess I just keep going best I can and continue to do yoga stretches and taking supplements. I’m determined to not let cancer treatment stop me doing what I love. So glad I read all these comments ... I feel now that there is now an explanation to my pain and slow miles! I also suffer with planta fasciitis ! The joys of tamoxifen !! But grateful to still be alive and kicking ! Sending positive vibes to all you runners and triathletes x

  • inccmd
    inccmd Member Posts: 14
    edited February 2020

    I'm back on the forum after breaking since the summer. All of your comments help to remind me the things I feel I'm not imagining. While I'm not a heavy duty athlete, I've always worked out or walked most days every week. I originally came to this forum after all the achiness I felt. I don't have the joint paint, but I definitely have the muscle twinges and the cement feeling. And I'm so much more prone to injury than before. What I do hate is how much my feet hurt when I've walked a long way.

    I'm 2 years, 5 months into taking Tamoxifen. The verdict is out on whether I do 5 years or 10 years. My oncologist said the conversation can wait until it's time since there are always more studies.

    Although it's sometimes a struggle to bring myself to move and exercise, I've noticed that I feel better when I do than when I don't. Anyone else notice that at least some regular exercise helps, especially stretching after working out?