Pain in femur - mets or tamoxifen...?

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Nichola
Nichola Member Posts: 402
edited June 2014 in Not Diagnosed With a Recurrence or Metastases but Concerned

Hi girls,

I have been putting of writing this post, but this is obviously going to continue to bug me so here goes....

After a my recurrence in Nov 2007, I started tamoxifen in Jan 08.   I suffered loads of side effects including an intermittent pain in my RHS femur/ thigh.  My onc ordered a bone scan (July 08) which to my relief was clear.  I came off tamox July 31 to determin SEs from possible other real ailments and sure enough the pain in my femur went.  I went back on it in January and now for the last 4 weeks the same, intermittent pain in my femur has returned.

Has anyone else experienced similar thigh pain with tamoxifen?  It's such a wierd place to get a pain, I'm not really sure if it's bone or muscle... it doesn't seem to be getting worst and isn't really bad...!  Should I trust that the bone scan would have picked up any problem or should I report this again?

 I have to say I had so many tests and scans last year  that I'm loathe to go back if this is indeed something that others have experienced.

Thanks in anticipation of you advice...

Nikki x 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2009

    it sounds like it's from the tamox (since it went away when you stopped and came back when you restarted)--I would trust the bone scan, they're pretty reliable. I've had various aches and pains (just finished  5 years of tamox)--I take ibuprophen as needed, now I've switched to tylenol arthritis pain formula.

    Anne

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  • lisa-e
    lisa-e Member Posts: 819
    edited March 2009

    Nikki,

    I also have pain in my thigh since starting tamoxifen.  It comes and goes.  I will bring it up with my onc on my next appointment; however, I have been attributing it to  tamoxifen as I had a clear bone scan before beginning tamoxifen and the pain started after I began taking it.

    I agree with awb that your pain sounds like it is related to tamoxifen.  But if it persists or gets worse I would tell your onc and ask for another scan.

    lisa-e 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2009

    Nikki

    I too have the thigh pain...I also have it on the same side with my hip pain.....xrays were taken back in Sept and nothing was there...oncologist believes it is from tamox.

    I have an appt with my primary this coming Wensday and that is one of the things on my list to discuss....the oncologist offered pain killers but I dont want to take stuff like that but not sure what to take when it bothers badly.

    Im about 2 1/2 yrs on it now and hoping I can survive it the full 5 yrs..I did have a hystorectomy and tried Arimidex but it was much, much worse for than the tamox.

    Best wishes

    Jule

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  • 3boys4me
    3boys4me Member Posts: 319
    edited March 2009

    Me, too.  I went for a bone scan it came back clear, so figured it was the tamox.  I have started taking glucosamine which is for joints, but it has seem to helped.  Might be worth a shot...

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  • ejlj
    ejlj Member Posts: 211
    edited March 2009

    OMG!  I was just at a school event for my 7 year old daughter and my husband leaned over to me and said "what's the matter"  I must of had that look.  Anyway my right femur was hurting and has been coming and going now for a few months.  I said to him "do you think boniva causes bone pain?"  He said he thought so, but I still can't help but think of metastatic disease.  I'm not on tomoxafin and I too am having the pain!!!!!!  tina

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  • Nichola
    Nichola Member Posts: 402
    edited March 2009

    Thanks girls - I love this site!  It's such a relief that I'm not the only one especially as I've had it all evening...!

    Jule - I would love an update on what your primary says... 

    Tina - are you on any other hormonal treatment?  Isn't Boniva for osteoporosis? 

    Nikki x 

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  • ejlj
    ejlj Member Posts: 211
    edited March 2009

    no hormonal treatment for me, only her2 pos.  yea, boniva is for bones.  I too was glad and relieved to see your thread.  thanks for sharing.  tina

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  • nobleanna007
    nobleanna007 Member Posts: 641
    edited April 2009

    Nichola, I would agree with the rest its the Tomax. I have terriable joint pains, I am not sure about legs yet since Herceptin has caused me to have aches from waist down. But it will be intresting to see if my pain issues improve now that I have finished H this week. I sure hope it does it really stinks to be in pain 24/7 when you have gone through the hardest part of your TX. But I have nerve issues anyways so it all just intensfied by all the stuff they give you.

                  Good-luck with it and I would mention it to your ONC. that when you take it you have pain and when you don't it goes away. I pretty sure their is other stuff they can try on you for Hormonal TX.

                                                    HUGS-Bridget

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  • Nichola
    Nichola Member Posts: 402
    edited April 2009

    Thanks Bridget

    I was aware that many people have experience joint pain with tamox, but my thigh pain is in the "middle" and always on the same side!

    As far as I know, being pre-menopausal, tamox is my only option...?  Although saying that having now being DX with a really large uterine fibroid and ovarian cyst, I think I may go for an ooperectomy which will give me a host of options!

    Nikki x 

    Nikki

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  • pdb
    pdb Member Posts: 68
    edited April 2009

    Nikki - I had  a weird "thigh" pain when I was on tamox. It wasn't a horrible pain, but I would notice it nearly every day.....wasn't in a joint and really felt more like in a muscle than in bone. Started maybe a year or two after I started tamox. Stopped when I switched from tamox to Femara last year.

    Great thread....

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  • marlenet
    marlenet Member Posts: 345
    edited April 2009

    I also had thigh pain!   I was worried it was a blood clot.  My hip on that side hurt a few days ago as well.  My thigh did did not hurt to the touch, feel warm,  hurt all day ( the pain would come and go) turn red etc... it just hurt yesterday. Today it feels better.  I started taking tamoxifen a week ago.  I don't know if the pain was from that or because i started working out a bit harder...

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  • wallan
    wallan Member Posts: 1,275
    edited May 2009

    This is so eerie!! I have the same kind of pain! I was going to post about it just now. I am on aromasin, 5+ years NED from stage 3 BC. I have a weird pain in my thigh, groin that comes and goes! I only notice it when I am sitting or driving.

    It isn't bad, just noticable. It is interesting that others have similar pain and it is from hormone treatment.  

    Wendy A

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  • caaclark
    caaclark Member Posts: 936
    edited May 2009

    Ok, I will chime in here too.  I don't get the thigh pain (but I probably will now that I read about it :)) but my left hip will sometimes bother me.  It is not consistent persistent or worsening but I will mention it next week at my appt. just because of the fear of recurrence cloud that hangs over my head.  Now, I am only 43 (40 when diagnosed) but am ER+ so did the hysterectomy and now on Femara.  And, I run several times a week so I have a feeling it is a combo of impact related and Femara side effects.  Like Wendy, it comes and goes.  Just enough to freak me out on occasion.  Always worse the day after a run. 

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  • Member_of_the_Club
    Member_of_the_Club Member Posts: 3,646
    edited May 2009

    It could be that the IT band, which runs from the hip to the knee, is too tight.  This happened to me from running and it caused pain in both my hip and knee.  Try stretches that work on the hip and outer thigh.  Yoga is helpful for this as well.  In fact, my pain went away completely when I started yoga, but I'm taking a break from yoga cause I find it bor --ing, and the pain has returned.

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  • DCMom
    DCMom Member Posts: 624
    edited June 2009

    caaclark- I have to say I also develop pain in almost every place i have read about.  My self induced pains drive me crazy, but they all seem to subside. 

     I have found that after running I get a dull ache in my rear, both sides but always more on the right.  It happened for a while during a move and I thought I had probably pulled something carrying boxes.  Now it is back after increasing the distance of my run and doing more hills so I am waiting for it to go away.  I am trying hard to stay calm since it has only been a couple of days, but its so easy to panick.  I have my 3 month follow up on Monday so I will bring it up then, but I can't pin point the pain and definitely my hips, rear and legs are tight.  I find sitting indian style and leaning forward stretches things out and take away the aches.

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  • misty100
    misty100 Member Posts: 3
    edited April 2013

    Hi there, I have exactly the same problem - a dull ache in my right thigh (and a lesser ache in my left) worse at night. Have had blood tests and x-rays which were normal and a few mths ago full body MRI + bone scan. Now going back to onc for further tests but would be mightily relieved if it was the Tamoxifen. Have been on the Tamoxifen for a year now and apart from hot flushes haven't had any other symptoms until this started up about 3 months ago. Has anyone else out there been through this and what was the outcome. Dx 17/5/2011 LC, 5cm, Gr. 2, 11/12nodes, ER+, HER2-.

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  • wishiwere
    wishiwere Member Posts: 3,793
    edited April 2013

    Just adding, that I've had left thigh pain, as well as both hips and shoulders the entire time I was arimidex from 2008 to the middle of 2012.  The pain went away for a bit in all 3 places, but has recently really come back with a vengeance.  I'm praying its not b/c I quit smoking, b/c to be honest, it started soon after that....:(  Regardless, it's back and painfull enought to wake me every couple hours at night.  I wonder if it's just a lasting reprecussion from chemo and/or arimidex anithormones :(

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