Runners and other Athletes on Tamoxifen
Hey ladies. I scoured the tamoxifen threads and didn't find much related to this topic, so I thought I would start it.
I'm 53 and an avid runner, cyclist and fitness instructor (in addition to my full-time job in advertising) and I was wondering if any of you have had issues with intense athletic endeavors and tamoxifen.
I ran my first half marathon since my BC treatment yesterday. I've been on tamoxifen for 7 months and ironically took a break about 3 weeks ago do to sweling in my feet and ankles that was making running uncomfortable. I'm happy to say that after only 4 days off the tamoxifen the sweeling went down.
However, I had the worst half marathon of my life yesterday. At about the 11 mile mark, I developed a severe cramp in my left calf (like the charlie horses I started having at night almost immediately after I started tamoxifen). I slowed to a walk, thinking I could walk it off, only it quickly went into my shin, then my ankle and finally my feet. My toes were literally curled inside my running shoes. THen it started up in the other leg. I hobbled the last two miles (but managed a slow run to cross the finish line, 'cuz I wasn't gonna cross it walking!)
I was as hydrated as I would normally be for a run; in fact, I made more frequent water stops than usual, opting for Gatorade instead of water, specifically to avoid the possibility of cramping.
I have NEVER cramped on a run, or even a 70 mile bike ride in my life, so I'm thinking it had to be the tamoxifen.
I'm going to need a strategy for my next half...like going off this nasty drug maybe for a full month before race day. I'm sure my onc would be appalled but this is what I love and how I am battling the weight gain from tamoxifen.
Anyone else have a similar experience?
Comments
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Interesting. Did you notice any differences during training?
No one would call me an athlete (but I go to the gym, hike, swim, spent the weekend doing serious digging in the yard, etc) and I definitely notice that I'm a slow-bee. I thought it was due to getting older (I'm almost 48). FWIW, I still have some sleeping probs on tamox so I sometimes wonder if that plays a part.
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Spinnerpom, After 14 months, I had to stop tamoxifen (a year ago) because it affected my breathing so much that my PCP thought I had COPD from radiation. I did not, my lungs are fine and felt normal after stopping the drug. It makes me depressed, anxious and tired - I also have a difficult time exercising with not being able to do my normal workload, long recovery time, and with cramps in my feet and toes usually. I have had charlie horses wake me up in the middle of the night while on it too. I get terrific bruises and my skin gets tissue paper like, so it is definitely doing something bad for my entire body. I am not a runner, but I am active and was before the BC. I guess what I mean to say is you are not imagining this. I am trying to get back on the tamoxifen after being off it for a year and trying all of the AI's - the side effects of those were horrid for me. I am not having great luck with the tamoxifen this time around either. Good luck to you, it's awesome you can run that far!!
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@peggy_i....I didn't feel any real differences during training, but I did have a lot of night-time leg and foot cramps while I was training. I started getting night charlie horses in my calves and feet soon after starting tamoxifen, but I can usually keep them under control with tonic water before bed but they got much worse on the nights after I did my long training runs.
Perhaps on my next long run or race, I need to carry my own fluid and fill my hydration belt with tonic?
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My wife Bev, who is now 49, has run two half-marathon's since finishing her breast cancer treatments 3-4 years ago and starting on tamoxifen. I don't recall her having those problems, as I run with her. But, fatigue has been a major complaint. She needs more rest and seems to run out of steam during a run, more than before treatments (chemo, rads, tamox).
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Sara, I haven't had the cramping issue. I run half marathons too. I am more bothered by fatigue. I drag ass! Never was a fast competitor but much more difficult to even get myself out to run, to train, etc. hope maybe that improves once I'm done with tamoxifen. I like the idea of bringing tonic water with u! Maybe the diet tonic water? Although it tastes gross! That's always been my reasoning for occasional gin and tonics! Good luck...maybe you'll just have to hydrate more than u used to...Karen
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Sara, I have been on tamoxifen for 15 months. I am 49, and have been an athlete all of my life, and am struggling with pain, cramping, and stiffness. The leg cramps were more severe during the first 6-8 months, and I still have them occasionally, but not often. I also am in a constant struggle fighting weight gain. I gained about 20 lbs. in the first 6 months, but have managed to get all but 5 of those lbs back off. I had some surgery to work on revising my resconstruction the first week of August. I had to limit all physical activity for 6 weeks, and when i was cleared to start exercising again I was excited. Started back with a trainer, because I needed to get back as quickly as possible. (I am a basketball official) I have been having severe problems with pain, and stiffness and overall fatigue ever since. I am seeing a physical therapist weekly, and am trying to find answers. When I am exercising, once I get past the initial pain during warm-up I feel better, but the next day I really suffer. The physical therapist thinks the lack of estrogen is making my muscles tight and slow to heal. My general dr just did some blood work, and is doing some in depth checking of my hormone levels. I am going to call my oncologist and talk to him. If the blood work is good, my Dr suggested that I try DHEA and maybe some testosterone. I am trying to find anything that will help, but not compromise everything I am doing to stay cancer free. I saw on the Livestrong website that there are certain vitamins you can take for muscle tightness. I am looking into that as well. I will let you know what I find out. One thing I have been told is that exercise is good for the pain, and staying hydrated is extremely important. Hopefully we will find something that will help, while still protecting our bodies from cancer. Good Luck, Lynne
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Severe shortness of breath, (my PCP also thought I must have bad lung disease) muscle cramps, very slow muscle recovery, fatigue, yep. I think when you ask about it, you also need to ask exactly at what level people are used to exercising. Days after surgery when I can only do leisurely walks, not as much of a problem, but, try heavy lifting, running etc, oh yeah.
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Sara, I visited with my oncologist today and thought I would give you an update. Told him my chief complaints were muscle pain and tightness, cramping, and fatigue . He said that unfortunately many who take tamoxifen have muscular skeletal problems. Also stated that women that were athletic and exercised before breast cancer seemed to be more aware of their bodies and the changes , so they had more complaints about the pain and stiffness. He said that being forced into menopause so suddenly was hard because the hormone levels were so drastically different. I asked about taking DHEA or Testosterone, and he did not suggest trying that. Said being hormone sensitive, he didn't recommend adding anything that could potentially cause a recurrence. Told me to keep exercising, work on stretching and warming up more than usual and continue taking supplement : Calcium, D3, B complex, Vit. C. naproxen and flexeril as needed. hope this helps. Guess we will keep moving, and keep fighting .
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Being 47 at diagnosis, I was perimenopausal before starting tamoxifen then gradually became postmenopausal while on it. Went through joint and muscle pains that sometimes subsided completely for weeks at a time, only to come back again. I didn't know if it was the tamoxifen or fluctuating estrogen levels causing all this. I did 3 years of it and then stopped for good about 8 months ago. I waited 4 months before starting on aromasin. With this, I started noticing joint and muscle pain all over, but especially in my feet, which made walking painful. Never had this problem before. And the sleep disruption on this was worse than it already had been on tamoxifen.
So after 2 months I decided that my body needed whatever little natural estrogen it still makes and stopped the aromasin. I've noticed that I have a harder time doing long hikes like I've always liked to do. In the past several months, I just have this general feeling all over like things have become more fragile and feel as if I'm overstraining muscles much more easily even though I keep up with my stairclimbing, cardio at the gym, and yoga to stay limber. Holding yoga positions has suddenly become really difficult and I can't walk more than a mile or so before my feet start really hurting. Hoping that all this isn't permanent and just going to go more downhill as I age (I'm 51 now). I'm really hoping that some of it is lingering effects of antiestrogen therapy that maybe I can recuperate in time.
If I hadn't gotten breast cancer, I might have gone onto some bioidentical type estrogen replacement to deal with the effects of menopause, but nobody will prescribe that, so for myself, with a stage 1, grade 1 cancer, I'm satisfied to be done with hormonal therapy after a little over 3 years.
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I really want to thank everyone who weighed in on this thread. Sorry I didn't respond sooner...been traveling for work and haven't had time to pop over here.
I'm finding that cancer docs really don't have much experience working with really active women. For so long this was an "old lady" disease. Even now, the average cancer patient is something like 61, depending on which study you consult. In addition, I suspect, most are sedentary (since most Americans are sedentary) and overweight (since 68 percent of U.S. adults age 20 years and older are overweight or obese, and obesity is a known risk factor for BC). So I feel like these docs really don't understand and haven't studied the effect of these drugs on very active women and athletes. Trail2, I think your doc made a great point about women who are active before BC being more sensitive to the changes in their bodies.
I just know that I was in the best health and best shape (strength and cardiovasular) of my life when I was diagnosed with BC and I wonder if I am ever going to feel good again or be able to get through a half marathon or triathlon without excrutiating pain or (gasp!) not finishing!0 -
Well, ladies, if during your travels you find things that help bring you back to your former selves, please post them here. I'm still early in treatment, but will start on Tamoxifen when chemo is done in the spring and I do fear not being able to return to my former athletic self. I guess people will cut me some slack for racing in the master's category once I get back on my bike, but I don't want to lose my ability or desire to push myself. Getting out there in nature and athletic pursuits define who I am and what I love. I will fight to keep that part of my life.
I'm an exercise physiologist and work with sports med docs who've run plenty of studies with breast cancer patients and I fully intend on asking for their advise on how to tackle these problems. I think because they work with both athletes and breast cancer patients they'll be a little more in tune with our problems. If this thread stays alive, I'll definitely report back to you whatever help I come across.
Best of luck. Please let me know how the training/racing goes.
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Hi again Ladies, It helps to know that there are others who understand and can relate to what I have been feeling. I am trying a more in depth warm up and stretching routine, and seem to be doing well. I still hurt, but do think that the more I do , the better I feel. And, I am trying to think positive about things getting better. I still feel like my body is wondering what in the heck I have done to it ! but, the sacrifice will be worth it if it keeps cancer from coming back. Hang in there and happy running, hiking, and working out. We can all use some endorphins flowing. Best of luck to you all, and keep in touch.
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I'm a sidelined runner because of plantar faciitis. The leg cramps have actually gotten worse since I stopped running. I have had leg cramps off & on since I was a teenager. But they have definitely increased. Since starting tamox a year ago,I've had those nights where I leap out of bed 5 or 6 times. I've also given up swimming laps due to leg cramping(usually my calves & sometimes my thighs). I did find somethings that help. Using a foam roller on my calves. Also the compression socks they sell to runners seem to help, even if I only wear them for a couple of hours a night before I go to bed. By no means a cure but I do believe these things helped me. I don't believe it's due to dehydration, low fluid volume or electrolyte imbalance. Just plain old screwed up hormones
. Hoping to get back to running soon. I've more leg cramps when I'm sedentary.0 -
coraleliz - I found that putting a salonpas medicated patch (from amazon) on the sole of my foot before bed helped a lot with the pain from plantar fascitis. Also, I am seeing a PT for knee issues and he uses the kinesiotaping on my knee which helps a lot while we strengthen it back up - I asked about the plantar problem and he did a taping for that too and it helped as well. I think the salonpas (regular style) helped the most.
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The box looks like this:
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I don't know that I am an "athlete" but I run 6 miles a few days a week and am a fitness professional and teach cardio/weight classes. I do exercise at least 5 days a week. I don't have the cramping but some days I lack energy. I do notice it is kind of in cycles....for a week or two I feel OK then some weeks I am just tired. I do get strange aches in my muscles which I never had before - mostly in my legs. I do take lots of vitamins and supplements and try to follow the Anti Cancer Diet. I also try to stay really hydrated. I was 45 at dx and am now 47. I do get bummed that I just can't do as much as I use to. My upper body strength is still lacking from my reconstruction/bmx. Oh well....happy to be healthy so I am making the best of it. I am glad to know I am not the only one experiencing the strange aches.
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Thanks Omaz! I've seen Salonpas at CVS(I think?). I've been taping my foot off & on. Unfortunately the tape makes my foot breakout in blisters & sores. I think if I could tape it more often it would really help. I'll have to try the salon pas.
I was 52 when diagnosed & in better shape they anyone else I know in their 50's. So my decline has to be largely due to getting older. Grrrrrrrrr.......................just can't give up though................ A lot of my aches aren't new. It's just that I've never had them all at once. I blame tamox for that. I won't ever PR again. So maybe I should look at it as a post-BC PR & have modest expectations
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Hi, I'm 54 and dx a year ago..since then lumpectomy, chemo, rads and 5 years ahead of me with tamoxifen. I've been on it since April 1.
I'm very active--not a marathoner, but a bikram practitioner 3x a week, hiking/walking 10-15 miles a week, 2x week at the gym. My yoga practice hasn't been affected at all...Two weeks ago I hiked 9 miles RT, 3000 feet elevation (both ways), and felt no soreness. Last week I hiked 7 miles out of the Grand Canyon (5000 feet up to the rim). I had no soreness. BUT I move more slowly in the a.m.s and my hips sure hurt, sleeping out for 7 nights. I had a wonderful pad, so I think it was the tamoxifen. At times I feel short of breath, but I don't know when that will happen or what causes it. It seems random. I felt like an old lady for the first time ever on my river trip because I moved slowly and stiffly in the a.m.s. till I got warmed up. I was disappointed in myself as I'm a former river guide and never moved like an old lady before.
Claire
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I'll put this out there with some hesitation because I am not convinced about it yet - but I didn't have the stiffness joint stuff before treatment and tam - recently I cut way back on wheat based foods like bread, pasta and all that. Not completely but about 90%. I *think* it is actually reducing the stiffness and soreness. Can't say for sure yet. I wonder if chemo has some effect on the gut that might somehow affect sensitivity to wheat/gluten. I have no idea!
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Interesting thread. I developed plantar fascitis a few months after starting tamoxifen when I was pushing through calf pain/tightness. I'm convinced PF was a result of the calf problems. I see my onc in January, and I'll tell him to add it to the list, because there's no way I had that before tamox. I've added some plantar fasciitis shoe inserts to my sneakers, and I'm seeing improvement (it's been about 2 weeks).
As far as going off the drug for brief periods, I'm going to share my experience. I went off for a few weeks for surgery this fall, and when I went back on, the SEs were crazy strong for about a month. In fact, the stupid PF caused pain to radiate up my leg.
Like you ladies have already discovered, time, exercise and plenty of water can help. But there may come a time when I have to really look at numbers. If tamox reduces recurrence by 40% and exercise/low body fat reduces by 30%, is there really such a vast difference? I mean if tamox is making it so our excercise is seriously curtailed, is it really helping that much?
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Fatigue has been my biggest complaint. One day I will have a great run and then next I have not energy and am slow. I hope my body adjusts! Have become addicted to running.
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I had the same response from my doctors. Mostly they were shocked that I was so young (30 years old), no family or personal history of any disease, very active (martial arts 6 days a week).
At every point whenever I've had pain or other complaints after surgery, most of my doctors would say that if I put on a few pounds (I went from a size 0 to a size 6 after my "tummy tuck" surgery) and did a little less exercise (I work out much less now than I did before cancer -- now it is martial arts 3 days a week at best) it would be fine. I've found that advise to be pretty much useless.
It seems that breast cancer rates in young women are skyrocketing, so I guess we're the guinea pigs for the next generation.
Sarah
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mdg --
What is the Anti Cancer Diet?
I asked my doctor if any particular diet, exercise or vitamins would help and he said no.
Thanks,
Sarah
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Haven't found anything that helps with my plantar faciitis yet. I'm doing less & it's getting worse
I did try Turmeric. Funny thing is, it's helping the mild arthritis in my hands & other foot, but not my PF. A little suprised here because I don't really believe in supplements. I'll keep taking it, since it's helping my sore joints. For my PF, I'm considering be put in a boot or cast. I might try a chiropractor 1st, they can try & break up scar tissue or maybe do some electic stimulation. Really feel like I'm grasping at straws though.......0 -
coraleliz - I was seeing a PT for my knee and told him about my foot. He taped it with kinesio tape and it really helped support the foot. I noticed it particularly when I got up in the morning my foot didn't hurt nearly so much. Maybe you could get a referral for PT?
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Coraleliz - I have had a bout of plantar fasciitis, and it did eventually go away. You can try several things: freeze a water bottle and then roll the bottle with your foot letting it go from your arch to your heel. Also gentle stretching and massage and take some anti-inflammatory meds, And, before you get up in the morning gently stretch and move your foot around before you walk on it. Going to a physical therapist can help as well. They may suggest you sleep in a boot to keep your foot flexed. Mine lasted about 2 months.
I still have some trouble with cramping, and my bottoms of my feet will cramp as well. Anyone can get plantar fasciitis, but I am sure the tamoxifen didn't help. Good Luck and hope it starts to feel better.
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This is such an interesting thread, thank you for starting it! I recently began my 4th year of Tamoxifen. I am an avid runner...and have ran a half marathon each year since my diagnosis. My goal is to run my first full, next year, to commemorate my 5th and final year on Tamoxifen. I have never had any problems with running, until this year.
Spinnerpom - I had a very similar experience while running my half marathon, in May. I was running a great race until I, too, began to cramp at about mile 9-10. I have never experienced anything like that...never in a race nor training. I hobbled along and ran as much as I could to the finish line.
I don't have any answers, as to why this happened. But, upon reading this thread I realize that I have had other similar experiences, along with this episode of muscle cramping. I, too, have had recent bouts with plantar fasciitis. This must all be related to Tamoxifen...
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I ran the whole time. now at stage iv for 14 months i have had to switch to run/walk. but did good for 10 years on drugs. I do remember taking a Tylenol or Excedrin before running and that helped
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Anti cancer diet is the book by Dr schreiber mentioned above. For me right now it is bad IT band pain. It was gone for a year and came back a few months ago bad. I do believe in yoga. I had a bad heel spur with lots of pain for years and I was told I needed surgery. With yoga the pain is completely gone! I have had plantar facsiatis in the past and ultrasounds really helped it go away along with stretching. I have been doing yoga for a year and my flexibility has improved a ton and I have less aches overall.
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