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11-30-2010, 05:29 PM
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#1
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Member
Join Date: Sep 2009
Posts: 6
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body aches
Hi Guys and Girls, I have been reading this wonderful site from far off New Zealand for the past 2 years and have learnt so much about Her2 breast cancer. Had FEC then radiation which both finished August 2009, Only had 9 treatments of Herceptin due to low muga results. But in the past 3 months I have had really bad body aches, especially in the shoulders, elbows and very bad restless legs that keep me awake each night. As i am also taking tamoxifen could this be the reason that I feel 80 years old (not 60) Any help that any of you can give me to help me get on with my life would be much appreciated.
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11-30-2010, 06:43 PM
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#2
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Senior Member
Join Date: May 2008
Location: Hershey, PA. Live The Sweet Life!
Posts: 2,005
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Re: body aches
Tamoxifen robbed me of sleep and made me feel drained and washed out. Once confirmed menopausal I switched to Femara. I have recently stepped up my exercise which has decreased my joint related side effects. If you are indeed 60, why not switch to an A.I. ? I predict you will enjoy a much needed rest.
All the best!
__________________
Smile On!
Laurel
Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara
15 Years NED
I think I just might hang around awhile....
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11-30-2010, 08:15 PM
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#3
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Senior Member
Join Date: May 2010
Posts: 76
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Re: body aches
Hello Cher,
I am so sorry to hear of your pain and sleeplessness.
There are quite a few women on this board who have reported joint pain, and I am one of them. I am not on Tamoxifen or AIs and I am 40 years old. I too suffer from achey joints all the way from my shoulder to my ankles. It is hard for me to tell if the pains are related to Herceptin or menopause or still lingering effects from Taxotere which caused me to have severe bone pain. My Doctors think it's from the Taxotere, but ladies at my clinic swear that the Herceptin is causing their pain.
Regardless, I have found that the more I move, the better I feel. Swimming provides some nice and relaxing relief for me and has the added advantage of moving lymph around the body while keeping a bit of pressure on the limb affected by node removal. Aqua-aerobics are making a big change in how I feel too, so perhaps it might be worth looking into?
Have you tried any relaxation CDs accompanied by deep breathing exercises to help you sleep?
Lastly, I suppose you have tried this, but I will suggest it just in case: Try to have a bedtime routine and a waking routine and stick to it as much as you can. Hopefully this will get your body and mind to form a habit and enable you to get some much needed rest and sleep each night. I set an alarm clock to wake me up at the same time each morning, even though there are days that I would love to sleep in. I find that if I sleep in even for an hour that it disrupts my sleep later that night.
Wishing you plentiful zzzzzzzzzzzzs in New "Z"land.
Deirdre
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11-30-2010, 08:35 PM
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#4
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Member
Join Date: Sep 2009
Posts: 6
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Re: body aches
Thankyou all so much for your replies; Yes I have a very regular sleeping regime that very seldom alters any day of the week, I have tried swimming but with working full time and looking after my husband who has just had a stroke there is not a lot of time left.
As to changing the tamoxifen I tried discussing this with my doctor but all he has said is we will look at it at a later date, I do struggle with talking to the oncologists etc as there is so much about breast cancer I still have to learn and I suppose because they do not seem concerned about the future I try to keep everything normal and not make waves. The night/day sweats I have are also a problem and in fact are so bad that sometimes I feel like I am going to collapse. I guess all that i really need was confirmation from other women like me that I am not the only one going thru these problems. By the way my cancer was stage1 grade 3 Her2+.
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11-30-2010, 09:45 PM
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#5
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Senior Member
Join Date: Dec 2006
Location: Oregon
Posts: 715
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Re: body aches
Cher,
My body aches eventually went away. I luckily am able to walk at least 5 times a week. A few sleeping tricks that seem to help me: Try just one motrin or one aspirin before bed. If I really can not sleep, I take 25mg Benadryl. A few stretchs before bed and some deep breathing yoga style helps me too. I had a year of Herceptin (fairly well tolerated) and no Tamoxifen.
Good luck, keep trying. I hope you get some relief.
Catherine
__________________
Catherine
Found my own lump in the shower
April 2006 at the age of 58
Stage IIB, ER- PR- HER2+++ multi focal tumors, largest 2.3cm
Chemo first: AC/Taxol over 16 weeks
Bilateral mastectomy Sep 06
33 rads after the surgery
1 year of Herceptin completed Dec 07
15 years and no recurrence as of April 2021
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12-01-2010, 07:35 PM
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#6
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Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
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Re: body aches
Hi Cher! Have you tried a little light exercise, or stretching a bit before bedtime? Maybe some gentle, soothing music? Are you taking anything for the joint pains? It seems like you have alot going on right now, especially with your husband's situation, and you caring for him as well as yourself is alot, but you must take care of yourself. Try to eat as healthy as you can, rest when possible, and take a few minutes each day to do something that you enjoy. Do you like to cross-stitch? If so, do it. What do you like to do? You are in our thoughts and prayers.
__________________
For Nicola
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12-01-2010, 08:28 PM
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#7
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Member
Join Date: Sep 2009
Posts: 6
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Re: body aches
Firstly thank you all for taking the time to reply to my moans,
Yesterday I bought some Vitaman B tablets and after reading about this on a restless legs cure site I rubbed my legs with Apple Cider Vinegar before going to bed(the smell was not good LOL) and unbelievably my legs did not twitch for the first 4 hours after going to bed. I will keep trying this combined with a panadol for pain relief.
I shall definately be speaking to my doctors about using other medication that hopefully will not have as severe side effects.
As we are now coming into our summer I shall try going for more walks.
Merry Xmas to you all from the other side of the world.
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12-01-2010, 11:51 PM
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#8
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Senior Member
Join Date: Jun 2007
Posts: 2,210
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Re: body aches
Cher, talking to the doctors can be intimidating , especially when they are off-putting. And I understand you don't want to make waves. But you have to be your own advocate. The doctors work for you. If you are having side effects, hot flashes or other concerns then you want them addressed NOW not at the doctor's "later date".
You have alot on your plate, as Bill pointed out. Perhaps some symptoms are related to stress/anxiety. Maybe you could benefit from a mild tranquilizer. Or at least someone to talk with. Does your cancer center have any social workers or support groups? Let us know how it goes.
Keep the faith.
__________________
Bonnie
Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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