Tamoxifen & Joint Pain

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  • PrettyMoon
    PrettyMoon Member Posts: 4
    edited March 2011

    Yes Jainey I definately want more info on the ND way.

    Thanks in advance PrettyMoon

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  • PrettyMoon
    PrettyMoon Member Posts: 4
    edited March 2011
    Your (sister's) doctor or onco can go to "Adjuvant! Online" and he/she can give you the percentage of Mortality rate and Relapse rate by plugging in your specific characterists of the tumor etc, this site is for Dr's only, but they should be willing to do that for you.  I have been to two oncologists and they both did this without me asking for it.  It is hard to understand at first, but it shows statisticly how much benefit the therapies they suggest will have for you. 
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  • scubacat
    scubacat Member Posts: 113
    edited March 2011

    This is an interesting thread, but it seems there are divided thoughts about whether this joint (esp Hip) pain is SE of Tamox. I have been on Tamox since Nov'10. I did not have any SEs for the first 2 months and then a few things started to happen. Very dry mouth some nights. Waking up and unable to swallow but drinking water. OK, I can live with that. I am/was pre-menopausal (52) and have not had a period since Nov'10, but have had one month of some 'spotting' and nothing else. BUT - the hip pain, that is the most concern right now. It's mostly at night and like others wakes me up. It does not stop me going to the gym, walking etc or doing most ordinary things, but it is very painful at nights - and I hate taking pain-pills! I'm seeing my Onco on Monday and I'll see what she says. Unlike others I have no gained weight (in fact I have lost weight); I am not getting hot-flashes and I am not killing my family - so nothing emotional affecting, for which I am thankful for. Like others I am ER/PR+ Her2- and my oncotype dx score was 11 (no rads/no chemo) but Tamox for 5 years. My %recurrence was listed as 7% from the DX test. I'm interested in the posts from Jainy and might discuss that with my onco. Jainy - if I was to look for someone similar in Dallas, what would I search for on the "alternative" side????? Thanks.

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  • Jainey
    Jainey Member Posts: 109
    edited March 2011

    Hey Scubacat,

    I PM you regarding ND Oncologists in your area ... www.oncanp.org should help. Let me know.

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  • curious4
    curious4 Member Posts: 1
    edited May 2011

    Hi.  Just wondering about the alternative regime to Tamoxifen you outline.  That sounds great!  My oncotype was 14 so they encouraged me to take Tamoxifen.  I've only been on it about 3 weeks, but I do feel achy.

    I'm wondering if anyone knows what the achiness comes from.  Why would an anti-estrogen cause joint pain?

    Thanks if anyone knows!

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  • Sherryc
    Sherryc Member Posts: 5,938
    edited May 2011

    I started tamox the on 2/7/11.  Within a week I was having hip joint pain.  My MO said for me to take glucosome condroitin the liquid.  2Tablespoons 2 times per day.  It took about 2 weeks before I noticed that it did help the pain. I did that for about a month and a half and then went to once a day with it still working.  I then decided to try to stop it and the hip joint pain returned.  So I am back on the glucosome and waiting for it to take effect.  I do yoga so I can really tell it in my yoga practice and also at night.  It wakes me up sometimes when I roll over in bed. 

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  • faithnGod
    faithnGod Member Posts: 1
    edited July 2011

     I started on Tamoxifen around Ded 2010 after my chemo and radiation. I had complained early on with my oncologist that besides the body aches i feel, i seem to be okay. While he has expressed that there are other patients who complianed about it, it is not for me to get off  at least 2 years before he change me over to a new med? In the meantime, i experience upper extremities aches, Lately, it has been my knees. It has become a constant struggle to be getting up in the morning. I am feeling frustrated that i can not do as much as i used to when i was a busy body. I feel exhausted after a day's work and literally can go to bed after dinner. I am coming to the point where my frustration is stepping up to a different level. I want to follow Doctor orders and i want to get well but just to think that i have to be on this pill for another 4.5 years depress me more than anything else. Today i thought just to browse some more on this Tamoxifen and joint related issues and i stumbled on this site. I am definite that this was God's way of talking to me, answering my questions, Though it is a little relief to know that it is what most others feel, I would still like to know that there can be a better med than this. 

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  • cgull
    cgull Member Posts: 15
    edited August 2011

    I am so happy to stumble across this thread. I too  fought the good fight in 2009, lost both breasts (choosing to have both taken though only 1 had cancer) (I had just turned 43 ) and was diagnosed her2nu+.  My first round of chemo (AC) put me into menopause. (16 rounds altogether). I thought I was tolerating the tamoxifen pretty well, with very little side effects. Yes, to weight gain (almost 25 pounds) but never occurred to me to blame the tamoxifen since I wasn't exercising, due to the fatigue, muscle aches and the HIP pain. Oh my goodness, I am on my feet all day at my job (retail), and the hip pain is at times excruciating. It is one of those things that is worse after sitting and then getting up, but is tolerable as long as I choose not to sit down and have to get back up. I am fine on my drive home, but getting out of the car is so painful. It is a viscous cycle, need to exercise for more energy and in hopes of helping the pain, but I hurt so bad it is hard to get started. YIKES! I am only 45, beat cancer, have 3 kids and an amazing husband. I try not to whine about it but am so happy that I am not going crazy! I am going to definitely discuss this with my oncologist. Calling in the morning to make an appointment! Thanks to all my pink sisters! xoxoxo

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  • pickle
    pickle Member Posts: 1,409
    edited August 2011

    Hi Pam

    I was on tamox for 2 years and just got switched to an AI. I had terrible joint pain, leg cramps, moodiness etc.for the first year. The 2nd year I really noticed a decline in the SE'S. For me, it got better over time. Hope you get some relief.

    Cheers

    Beth

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  • sorelegs
    sorelegs Member Posts: 1
    edited September 2011

    I have been on tamoxofen for 6 months and am seriously considering going off of it.  I am so tired and achy I can't get through my days.  I have went back to work 4 days a week and even that is too much.  I own my own business so I can't just quit.  I am trying half days now but getting so discouraged.  I have arthritis anyway but the tamoxofen flaired it up almost immediatly, month three was better but now I have had another flair up and it just won't stop.  I am going to give glucosomine a try before I give up.  right now I take my arthritic meds and tylenol every 4 hours. Am I crazy for wanting to chose quality over quantity?  there are no guarantees either way right?

    sore legs

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  • Chocolaterocks
    Chocolaterocks Member Posts: 364
    edited September 2011

    sorelegs

    tell us your age, your grade, type, stage,.... so we can assist you better.regards, cr

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  • fadheir
    fadheir Member Posts: 63
    edited April 2012

    I was on Tamoxifen for almost 3 years now

    and i have sholder pain and arm stiffness also i noticed cracking when i try to move my arm after long rest

     

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  • harrigirl79
    harrigirl79 Member Posts: 1
    edited May 2012

    Thank you ladies!  Reading these responses is so reassuring.  I started Tamoxifen about a year ago.  I've had similar symptoms for quite some time now.  I've attributed it to being overweight and inactive, but lately I have felt there must be some other reason.  I have never felt like this.  I'm not sure when I first noticed it, so I didn't put two n' two together, but I find i have hip pain and stiffness in my hips and knees.  Especially when I sit still for any length of time.  Thankfully it is not horrible, but I feel like and old lady hobbling around.  I find that keeping moving helps, it's just getting going that's hard.  Started to take yoga and walk more.

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  • Horsey55
    Horsey55 Member Posts: 1
    edited May 2012

    I'm glad to find this discussion! I've been on Tamox. for just over a month and just started having hip pain in the last few days.  It has been really bothering me the last couple of days and I was getting a little worried and wondering if it was from the Tamox. Just had my 6 wk follow up w/Radiation Onc. and she said if I wasn't having any side effects yet, she doubted I'd have them!  Glad to know others have had hip pain, since I can't really attribute it to anything else.  I just turned 47, had a lumpectomy w/neg. nodes in Jan., finished 6 wks radiation and now on Tamox. for 2 yrs. and will do Arom. Inhib. for 3 yrs. (compromised w/my Onc.).    thanks 

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  • SelenaWolf
    SelenaWolf Member Posts: 1,724
    edited May 2012

    Always had arthritic hip pain; now - with tamoxifen - have added achy hands-, feet- and knees to the mix.  But not achy enough to make me stop my walks and cycling.  However, I continue to be raging insomniac... getting used to two hours sleep a night...Surprised

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  • coraleliz
    coraleliz Member Posts: 1,523
    edited May 2012
    My arthritic hands got worse initially on Tamox but have since quieted down. Now, my neck, lower back & right foot have chimed in. It 's hard to believe that all these spots would be hurting at once if I wasn't on Tamox. I whimped out at the gym todayFrown. Usually I tough it out & am no worse for wearUndecided Hopefully the ibuprofen will kick soon.
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  • mumito
    mumito Member Posts: 4,562
    edited May 2012

    My recent bone scan lit up like a xmas tree.Even my ribcage shows arthritis.I too try to go to the gym regularly.but some days I am just too sore to exercise.Often I take an alleve capsule with my lunch before heading to the gym.It does help.

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  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited May 2012

    Years ago, before I began this journey, my hip used to hurt in the morning.  Bought myself a new mattress and that pretty much got rid of the pain...When I started this journey, I began ovarian suppression AND tamoxifen and my body became STIFF.  I could barely get those hip sockets to cooperate with my legs when I got out of bed in the morning.....

    I have found that the more I move my body, the better I feel.  Walking several miles a day keeps the stiffness at bay.  And regarding insomnia, the more I walk, the more restful night's sleep I get.  I recently broke my foot and was in a boot for 6 weeks and could barely walk.  It wreaked havoc on my ENTIRE body.  I have now resumed my walking schedule and feel terrific.

    Oh...and one more thing....my feet always hurt.  I wear serious walking shoes.  European shoes, NOT sneakers.  Steel supports in the insoles, insoles that mold to my feet and create a natural arch, some with rocker soles built into the shoe that you couldn't even notice, but feel the rocking sensation....  If I didn't have this closet full of shoes, I could NEVER walk!  When I broke my foot, I was wearing a pair of Mephistos.  The orthopedist told me yesterday, had I not been wearing the Mephisto, the break probably would have been much worse.  He thought the shoe gave me EXCELLENT support, which caused less damage to my foot when I fell.

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  • Nedeza
    Nedeza Member Posts: 666
    edited June 2012

    Oh wow...I'm glad I came back lurking through BCO because this is exactly the info I've been searching for. I've been on Tamox 2+ years now & after reading your posts I am realizing maybe the symptoms I've been experiencing is not all in my head! LOL!  I have been having joint pains more often in the last several months but attributed it to age, weight, hormonal, etc.  My hands have been aching particularly my thumbs...strange.  Granted I use my hands in my profession...am a dental hygienist...but now wondering if this is a side effect from the Tamox??  Well, one more thing to blame from all of this...urrr!!!  Are there other alternatives?  I'm on the "5 year plan" with the Tamox...the usual.  Not only do I have joint pain but I have been experiencing feminine issues...like being extremely dry!!!  Can't believe I said that but this IS the only place to get feedback without feeling uncomfortable.  Unfortunately, my ONC does not want me to use any estrogen based medications that my OB/GYN is recommending.  Been really feeling miserable with all these side effects!

    NAE

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  • ToniSkane
    ToniSkane Member Posts: 6
    edited July 2012

    Ok I thought I was going nutty. I've been on tamoxifen now for 20 months. Yes. Counting. I am 42 years old. Diagnosed at 38 with stage 2 er+pr+ her2+ and I feel crippled at times. Mostly at night and in the morning. My lower back. My knees. My hips and my feet. God forbid I sit on the floor cuz I can't get up without help. I hate how I feel. I'm normally active and I feel like I am 80. I take Aleve and sometimes Vicodin. I hate this pill but scared to stop it. I have 3 years left.. Wondering how I will make it on this for 3 more years. My hot flashes are outrageous. I've put on 20lbs and this just all around sucks. Anyone know what I can take to help alleviate these pains rather than popping pills? Thanks girls

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  • mumito
    mumito Member Posts: 4,562
    edited July 2012

    Toni I have found that regular exercise really helps with my joints.I drag my butt into the gym every second day.Also use light weights to help prevent LE.((hugs))

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  • Jwithay
    Jwithay Member Posts: 3
    edited July 2012

    Well, I guess you could say I feel better now that I know I am not crazy with these hip and thumb pains! I have been on Tamoxifen for 4 months and I am noticing that my movement (such as going up and down stairs) is getting more difficult rather than better. I had Inflammatory BC, diagnosed May 2011 but so far I have beat that. I am HER+ 90%. Now debating what to do about increased chances of Uterian Cancer since they found polips (non cancerous) on my Uteris a month before the IBC. I am also struggling with depression now that they have taken me off my prozac and put me on Effexor XR. Crazy thing is- I wasn't this down while I was going through all the treatments....Don't really understand. Thanks for all your posts!

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  • deeshka4
    deeshka4 Member Posts: 1
    edited August 2012

    This is so interesting to read.   I have been on Tamoxifen for seven months now after lumpectomy, chemotherapy and radiation for Stage II breast cancer and one node positive.  I have terrible pain in my feet, especially on the tops.  I feel like I can hardly get around at times especially after being up on my feet for any length of time.  My oncologist ordered x-rays of my feet to make sure that I did not have any stress fractures and those came back negative.  He said that he has not had any of his patients complain about this but since I have found so many other women with this problem it most likely could be a side effect.  I am hoping I can live with this for the next two years knowing that it will go away when I stop.  I am to be on the Tamoxifen for 2-3 years and then switch to Arimidex depending on my bone density tests.  I also, am okay with moving around but once sitting, driving in the car, getting out is excruciating until you "work it out".  I'll keep reading!  Thanks to all your posts.  From one pink sister to another! 

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  • chefmb
    chefmb Member Posts: 24
    edited August 2012
    It is infuriating to read that oncologists shrug off these SE's making us feel like we are crazy. Mine has been doing this to me since the beginning of my journey with Tamoxifen two years ago. I was 43 when I started. At first the SE's were hot flashes and a weird clicking feeling in my ovary area, then I missed about 5 periods (from the Tamox, I did not have chemo). My period resumed normally again but then I began to get ovarian cysts. One was so bad I thought I was going to have to go to the hospital. Then they found uterine polyps. My gyno did a hysteroscopy and D and C and told me I was FULL of polyps. She thought for sure I had endometrial hyperplasia but the pathology was benign. That said, I have not gotten a period since the procedure four months ago. Off to another sono this week then hormone tests. Those are the gynecological symptoms (which make me really nervous). Everyone says, "you are probably just going into peri-menopause." It is infuriating. No, I am not just going into perimenopause, it is the Tamoxifen screwing with my system. I, too, have many of the other SE's everyone is discussing here; the charley horse in the calf that can awaken me with a jolt, the weird thumb pain, the back pain, neck pain, really achy feet (bottoms), and the newest beauty, a kind of buzzing, humming, tingling in the lower legs and feet, esp. at night. Then there are memory issues, hair falling out all over the place, weight gain and belly fat (although I was able to lose some weight this year when I had a bad URI and couldn't taste or smell and basically didn't eat for 3 weeks, not eating really works!), and basic fatigue. It all really sucks. I am a pretty active person and still am able to live my life and do my work, socialize, exercise, etc. but it is just a total bummer. If the doctors would at least acknowledge that these issues exist, it would make me feel a lot better about it all. They really all stink. I had/have the best NYC doctors and I really have to say there is a huge missing link to the care. NONE of them treat the person, they all just treat the disease.

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  • kitchenlogic
    kitchenlogic Member Posts: 13
    edited October 2012

    Deeshka - I have the same pain on the top of my feet - one more than the other, that started after taking Tamoxifen (I've been on it for 2.5 years) my doctor suggested that plantars fasciitis could affect the top of the feet as well as the bottom. But I truly believe it's the tamoxifen. My hips are a mess. I try to walk but the seize up more the more that I walk.

    I hope that once I'm done taking tamoxifen, my hips and feet will feel better. I'm going to do my best to stay on it for the five years but I totally understand why some women just have to give up on it!

    And the hot flashes! Oh! The hot flashes! They're so embarrassing!

    Anyone reading this done with tamoxifen? Anyone out there who can offer light at the end of this painful tunnel?

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  • Kristina19
    Kristina19 Member Posts: 6
    edited October 2012

    HI Jainey,

     Is there some way to contact your ND Oncologist.  I would like to find a natural approach rather than use tamoxifan for this cancer.  Appreciate any help.

    Thanks

    Kristina

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  • littlejukie
    littlejukie Member Posts: 13
    edited October 2012

    How is your depression now?

    Julie

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  • Jwithay
    Jwithay Member Posts: 3
    edited December 2012

    Man, do I know about that pain getting into and out of the car. I was sitting at the kitchen table and my 10 grandson had to help me get up. That Tamoxiphen is the pits. The have switched me to Femura now have been on it for a little over 2 months. Other than my hair really really thinning out, I feel good. My nails are shot, they split right down the middle and the tips of my fingers are very dried out and I have to constantly put lotion and Aquaphor on them. God Bless you and I hope you are doing better. I love your statement - sisters in pink. I think I will adopt it. Jayne

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  • cherylgillooly
    cherylgillooly Member Posts: 1
    edited June 2013

    i was also relieved to stumble across this thread of posts. i have been feeling like a hypochondriac and thought my aches and pains were all in my head. i just started taking tamoxifen in april and was dreading the hot flashes that seemed like a given side effect... instead i started having terrible joint pain that seems to travel-mostly it is in my back, knees, and neck-and it was almost immediate-within the first month... i am an RN, and like to kayak, walk, hike, and ski. but i am in so much pain it is hard to get through the day. it hurts to walk, sleep, sit... i don't know how to get comfortable... nothing seems to help... i have tried glucosamine/chondroitin, nsaids, krill... to no avail... i am considering stopping the tamoxifen, but i am afraid... i read a post that said they stopped and the symptoms did not get any better... i tried doing a pilates for breast cancer survivors, and lasted 15mins, and could barely move the next day... it is pitiful... i want to feel better, and want to do the things i used to enjoy... i feel like i have aged 30years in 3 months... 

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  • Sparky48
    Sparky48 Member Posts: 4
    edited August 2013

    I am 48 years old and after a bi-lateral mastectomy and chemo and radiation, I am now on tamoxifen. I too have joint and muscle pain and I sometimes do go that dark place where I feel the cancer is all over my body. I pray daily and I know it will go away. I'm just 2 months out from last radiation treatment. First bones scan in October and already getting nervous.. God bless us!

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