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Topic: Hip and back pain. Tamoxifen??

Forum: Hormonal Therapy - Before, During and After — Risks and benefits, side effects, and costs of anti-estrogen medications.

Posted on: Nov 30, 2011 04:31PM

PlantLover wrote:

I've been having hip and lower back pain for months.  It seems to get better when I move around but doesn't completely go away.  When I get up from sitting or lying down, it takes several steps before I can straighten up without significant pain.  My back and legs hurt when I walk up stairs.  I never had this pain before treatments.

I have been exercising in an effort to control the pain but it doesn't seem to be getting any better.

When I saw my oncologist for my 6 month checkup he sent me for a PET to rule out mets.  I was so happy to get negative results that I didn't even think to ask my doc about taking me off Tamoxifen in case that's what's causing the pain.

I had my ovaries out in June because I didn't want to shut them down with Lupron so I guess I could switch to an AI.  I did ask my onc about staying on Tamoxifen or switching to an AI when I saw him (before the PET) and he said he wanted to keep me on Tamoxifen for 3 years.

Sooooo ... what do you guys think? I keep thinking I can live with this pain but maybe I don't have to.

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Posts 1 - 16 (16 total)

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Nov 30, 2011 04:35PM Sandeeonherown wrote:

I am actually experiencing the same thing on arimidex...went to my chiropractor this afternoon and she said my right hip area is inflamed and to expect a bout a month of recovery...it was an issue 6 weeks ago bu nowhere near what it is right now...my oncologist recommended aleve but i can only take it for abit of time as i am a=on a blood thinner too so...too much of a good thing....other than the back issue, i am ok

Sandee...two years four months cancer free! February 2013

Dx 6/16/2010, IDC, <1cm, Stage I, Grade 2, 0/8 nodes, ER+/PR+, HER2-
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Nov 30, 2011 05:31PM LtotheK wrote:

I've had this since the second month I've been on Tamox.  Now at the one year mark.  Work out all the time, and nothing makes it retreat.  I can't imagine four more years, but I'm going to try massage therapy.  I think there's a lot that can be done before we throw the proverbial towel in, so I'm keeping the faith.  My lower back has always been problematic.  I feel like Tamox has laid bare my weak spots (knees, shoulders, and back most acutely).

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Nov 30, 2011 05:56PM DiDel wrote:

your joint pain may be from the abrupt loss of estrogen from having your ooph. When I had chemopause I had every joint in my body aching and my onc said that was the culprit. Once my period returned the pain went away. I did also do acupuncture which helped as well. Maybe give that a shot to ease the pain until your body adjust.

Hang in there.

Diane

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Nov 30, 2011 09:34PM PlantLover wrote:

Thanks for the responses.

Maybe I should just stick with the Tamoxifen for now if AI's can cause the same problems.  Maybe it's just the loss of estrogen as you said, DiDel but I was on chemopause too and didn't have this exact pain. 

"Live with intention. Walk to the edge. Listen hard. Practice wellness. Play with abandon. Laugh. Choose with no regret. Appreciate your friends. Continue to learn. Do what you love. Live as if this is all there is." -- Mary Anne Radmacher

Dx 10/2009, IDC, 6cm+, Stage IIIb, 3/15 nodes, ER+/PR+, HER2+
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Nov 30, 2011 10:38PM DiDel wrote:

My joint pain was much more severe about a month after my last chemo. Your poor body has been through so much. I am telling you though I found tremendous relief through acupuncture. I highly recommend it! Yes I heard AIs were worse..believe it or not. I have had no side effects from T other than weight gain but my onc swears its...are you sitting...middle age! Yeah he went there!! LOL

I hope you find some relief soon! Hang in there

Diane

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Nov 30, 2011 10:49PM gentianviolet wrote:

Of course my onc insisted that the hip/knee pain I have on tamoxifen is really my age and not a side effect.  Strange how I never had this problem before taking it........but within three months I definitely felt it, muscle pain in my thighs too, as well as cramps in my feet.  I read that someone here on BCO doubled up on fish oil and it helped her.  I tried it and much to my surprise it did work.  Not all the pain is gone but enough that I am back at the gym working out.  I hope  you can find something that helps you resolve your pain.

Barbara

Dx 8/12/2009, IDC, 2cm, Stage IIa, Grade 1, 1/14 nodes, ER+/PR+, HER2-Surgery 09/01/2009 Lumpectomy (Right); Lymph Node Removal: Sentinel Lymph Node Dissection, Axillary Lymph Node Dissection (Right)Radiation Therapy 10/15/2009 ExternalHormonal Therapy 01/01/2010 Tamoxifen
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Dec 1, 2011 08:26AM, edited Dec 1, 2011 08:27AM by LtotheK

AI joint pain is supposed to be considerably worse.  I am not sure on the "why joint pain" in Tamox, but it is a low-dose chemotherapeutic drug.  The estrogen may be an issue, but I think there are other implications.  In the AIs, the complete stripping of estrogen is usually the culprit.

Barbara, my friends are always telling me, "oh, don't blame cancer, x is part of natural ageing."  Excuse me, but the need for reading glasses and significant arthritic pain and chemopause are NOT part of a 41 year old's usual experience.

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Dec 1, 2011 09:19AM gentianviolet wrote:

Ltothe K, I am well aware of how an aromatase inhibitor can cause joint pain as I was put on Arimidex at the beginning of this journey.  After 3 months or so the pain escalated to the point of waking me frequently during the night not to mention the insomnia that kept me from going to sleep in the first place.  Eventually my onc tried Aromasin (also no good) and then finally Tamoxifen.  Yes, the pain was less on T (rarely was awakened during the night from pain) however I wanted as little to no pain, if it were possible.  The extra fish oil helped, it helped a lot.  It made me wonder if these medications have anything to do with a drastic reduction of Omega 3s in our bodies.  Just a thought.

Barbara

Dx 8/12/2009, IDC, 2cm, Stage IIa, Grade 1, 1/14 nodes, ER+/PR+, HER2-Surgery 09/01/2009 Lumpectomy (Right); Lymph Node Removal: Sentinel Lymph Node Dissection, Axillary Lymph Node Dissection (Right)Radiation Therapy 10/15/2009 ExternalHormonal Therapy 01/01/2010 Tamoxifen
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Dec 1, 2011 09:54AM pickle wrote:

I was on Tamox for 2 yeard and was switched to Aromasin 4 months ago because I am post menopausal. I had calf cramps and joint aches for the first 9 or 10 months on tamox. I am having worse joint pain in the hips and upper back on Aromasin as well as sore feet and cramping aching hands. The hip and back pain wake me up everytime I turn and my DH says I moan all night. Once I am up and moving it's much better but if I sit for awhile I seize up again. My PCP has been keeping an eye on things and has scheduled me for a bone scan next Monday to be on the "safe" side. I don't want to do the scan if it really is just the SE's of Aromasin. What to do..what to do.

Dx
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Dec 1, 2011 12:45PM peggy_j wrote:

LtotheK

Excuse me, but the need for reading glasses and significant arthritic pain and chemopause are NOT part of a 41 year old's usual experience.

As an FYI, both a friend and I got reading glasses in our very early 40s. I guess someone has to be statistical outlier. (but my doc did say I hold my reading material closer than most people)

Dx 2/2011, IDC, <1cm, Stage Ia, Grade 1, 0/3 nodes, ER+/PR+, HER2-
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Dec 3, 2011 04:00PM, edited Dec 3, 2011 04:01PM by LtotheK

Peggy_j, actually, I do like to hear those stories.  It helps me feel like less of a wreck.

Barbara, how much fish oil did you bump it up to?

As for the Tamox and back pain, I go through phases.  Sometimes, it's pretty tolerable.  Past three days, it's woken me up all night.  I'm going to try and find a massage therapist and will talk to my PT when I get a new fitting for my LE sleeve.  I have to wonder sometimes.  Sleep is certainly attributed to health issues as well, sometimes it really fees like trading one thing for another...

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Dec 25, 2011 03:47PM gentianviolet wrote:

LtotheK:

I was initially taking 700 Omega 3 polyunsaturates per day.  I bumped it up to double that dose and have on occasion taken three times that dose.  The 700 omega 3 dose contains 380 mg EPA and 260 mg DHA per capsule.   It continues to work on reducing (at least by 50%) the hip/knee pain I have while on tamoxifen.

Barbara

Dx 8/12/2009, IDC, 2cm, Stage IIa, Grade 1, 1/14 nodes, ER+/PR+, HER2-Surgery 09/01/2009 Lumpectomy (Right); Lymph Node Removal: Sentinel Lymph Node Dissection, Axillary Lymph Node Dissection (Right)Radiation Therapy 10/15/2009 ExternalHormonal Therapy 01/01/2010 Tamoxifen
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Dec 25, 2011 10:14PM, edited Dec 25, 2011 10:15PM by lisa-e

I am another person who needed reading glasses in my early 40s, long before I was diagnosed with breast cancer.

I would resent someone who would say my side effects are a normal part of aging.  Mighty suspicious that the side effects I have had began shortly after starting a new drug.

Initial BC dx with dcis & idc after lumpectomy & snb in 6/08. in 8/08 dx with multicentric bc (idc) after mri. had bilat mastecomy in 9/08 w/o reconstruction

Dx 5/2008, DCIS, 2cm, Stage 0, Grade 3Dx 6/2008, IDC, <1cm, Stage I, Grade 1, 0/1 nodes, ER+/PR+, HER2-Dx 8/2008, IDC, 1cm, Stage I, Grade 1, 0/19 nodes, ER+/PR+, HER2-
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Dec 26, 2011 12:18AM cycle-path wrote:

The age at which one needs reading glasses is generally dependent on how nearsighted or farsighted one is. A very farsighted person will need reading glasses early -- almost certainly by 40 -- and a very nearsighted person may be able to manage without reading glasses forever (simply by removing his or her regular glasses). 

I am an Uppity Woman. Don't like my posts? Put me on IGNORE.

Dx 12/10/2010, DCIS, 1cm, Stage 0, Grade 2, 0/2 nodes, ER+/PR+
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Dec 26, 2011 11:22AM barsco1963 wrote:

This is why I like this site - so much information shared. I too have recently been having a lot of joing pain esp. in hip and lower back (especially after walking) I have been blaming it on my boots, shoes etc. I still don't associate new SEs with the tx or cancer. Is something I have to become more concious and aware of I think.

Being 48, I chalk a lot of it up to age (although 48 is not that old) as I did have some arthritic type pain prior to being diagnosed.

p.s. Got reading glasses about 40yrs and can't get by without them now. Ugh!

Humour is life's greatest shock absorber!

Dx 5/30/2011, IDC, 4cm, Stage IV, Grade 2, 21/29 nodes, mets, ER+/PR+, HER2-Hormonal Therapy 07/25/2011 Tamoxifen
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Sep 12, 2013 08:19AM, edited Sep 12, 2013 08:24AM by SoccerMama3

I started taking Tamoxifen last week and have had severe lower back pain for the last few days.  During chemo I had joint and muscle pain from Neulasta and prior to cancer diagnosis I never experienced any type of back pain.  I am also having pain and pressure in the pelvic area, compareable to menstrual cramps but I just finished my cycle so not related to my perod.  My onc said the pains should subside once my body adjusts to the meds, but reading these posts it looks like it may be a side effect that continues.  Still so much to deal with.

Dx 6/19/2012, IDC, 3cm, Stage IV, Grade 3, 5/26 nodes, mets, ER+/PR+, HER2-Hormonal Therapy TamoxifenRadiation Therapy ExternalSurgery 07/09/2012 Mastectomy (Left); Lymph Node Removal: Axillary Lymph Node Dissection (Left)Chemotherapy 08/17/2012 Cytoxan, Ellence, fluorouracil, Taxotere