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Old 01-11-2007, 07:05 AM   #1
CLTann
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Join Date: Oct 2005
Posts: 476
Bone mets symptom

We all are very fearful of any ache as a potential met. I suspect my bone or muscle aches are Arimidex side effects. However, one cannot rule out the possibility of being met. Those of you had real bone met, please describe the nature of ache (or even the absence of ache) for my reference. My sore or ache can be relieved by warm water soak, hot pad or Advil. This being the case, what are your opinions of my discomfort, which is worse at night. My sleep is very much interfered by the problem and the lack of sleep further accentuate the problem. Your kind inputs will greatly help my mental health. Thank you for taking time to answer my worry.
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Ann

Stage 1 dx Sept 05
ER/PR positive HER2 +++ Grade 3
Invasive carcinoma 1 cm, no node involvement
Mastec Sept 05
Annual scans all negative, Oct 06
Postmenopause. Arimidex only since Sept 06, bone or muscle ache after 3 month
Off Arimidex, change to Femara 1/12-07, ache stopped
Sept 07 all tests negative, pass 2 year mark
Feb 08 continue doing well.
Sep 09 four year NED still on Femara.
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Old 01-11-2007, 09:13 AM   #2
Sheila
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Ann

I can't answer the bone mets "feeling", but I can tell you that my Mom had such severe aching at night that she had to be taken off Arimidex....never had a problem with Tamoxifen, but the Arimidex was awful....as in all treatments, everyone reacts differently...you may be one it affects.
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is fighting some kind of battle."



Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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Old 01-12-2007, 07:59 AM   #3
MJo
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I can identify. Wednesday I went to the oncologist due to muga score issues and we decided that the nine months of Herceptin I've completed is enough. I was all prepared to celebrate the end of treatment (except for arimidex) with a trip to the mall to buy shoes! So I casually mention to the oncologist my right side rib pain. I've had rib pain on and off for years -- sometimes on the left, sometimes on the right. I've even had hairline fractures, so my ribs are vulnerable. But he has set me up for a bone scan. For two days I've been as terrified as my first day of diagnosis; today I'm better because I finally slept. I am tired of being frightened by my condition. Stage 1 bone mets are extremely rare, but they happen. Of course I immediately googled symptoms of bone mets. You can do that too. The nurse practicioner didn't help. I wasn't too worried about the bone scan until she told me to "keep my fingers crossed." That reduced me to quivering fright. Of course, this is the women who, when she saw my muga score had gone up a point in 9 weeks, said "I didn't know they could do that."

I don't think it matters much if our recurrence risk is 10% or 40%, the fear is the same. I hope that my bone scan will be clear and that I can go to the mall and buy shoes. MJO
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MJO

IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
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Old 01-12-2007, 07:52 PM   #4
Jean
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Oh MJO,

I am so sorry that you have to go through the wait and worry time (thats what I call it when we have tests). I am praying that your scans come back
just perfect. I am sure they will.

Also....Ann, I was on the Arimidex and I will tell you it is painful. I experienced a lot of muscle and joint pain and for some reason it was always worst at night. Maybe because we are still and resting. I found that the non movement was especially difficult, getting out of bed or the car after sitting for a length of time. I did stop the Arimidex and moved over to Femara. Now it is not free from discomfort but it is slight compared to the Arimidex. I also think the longer we are on the AI there maybe a build up and hence the joint pain increases. After a few months on Arimidex I had such pain in my hip
and spine I thought I had bone mets also. Insisted on a bone scan and
thank God there was nothing. Hot baths and hot tub helped me but it did not
last very long. Exercise is the best helper I have found. The movement
and weights help (it is not easy as you may feel stiff) but once you warm
up nice and slow you will find the movement is a good solution. But for me
I chose to switch over to Femara. I only hope the Femara does not
begin to hurt because then what will I take?

Best to both of you and I send you my prayers.

Warmly,
Jean
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Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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Old 01-12-2007, 08:01 PM   #5
Jean
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Ann,
If you continue to feel pain I would have the bone scan and this will give
your mind some peace (as I am sure it is the Arimidex ) that is giving you
this pain. But we worry once we are dx with this dreaded disease and
each pain that continues turns us into jello.

Please let me know how it goes....and MJO keep us posted on your scan.

Blesssing and love

Jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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Old 01-12-2007, 08:43 PM   #6
heblaj01
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Ann
If you are allowed to switch to Femara (which is quite similar in its mode of action to Arimidex) you may suffer less short term side effects according to the original clinical trials comparing the 2 drugs.
However I believe Femara is an even stronger estrogen suppressor & may in the long term be more prone to cause osteoporosis unless this side effect is monitored & treated concurrently (& not afterward) with the administration of the AI.
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Old 01-13-2007, 06:11 AM   #7
VirginiaGirl
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Location: Fredericksburg, VA
Posts: 93
Ann, I have bone mets but can't say for sure what bone pain feels like. I actually don't have any pain, now. What I have had seemed more like nerve pain, lasting various lengths of time and in various places. Stretching seemed to help a lot. And since I started Zometa I haven't had any, so I'm assuming it's helping. The scary thing is that in July when I had my bone scan to restage, it turned up clear, even though the PET & CTs had shown plenty of mets to my spine. Based on others' replies, it sounds like the Arimidex could well be your culprit. I didn't respond to hormone treatment, so I probably will not be trying it myself. Talk to your doctor about switching, and keep us posted!
Peace,
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Liz
3/05 Initial dx invasive dc 2 cm lump, age 39
lumpectomy & 3 of 5 nodes +, ER+/PR+, Her2+++
alternative chemo 5/05-7/05, rad 8/05-10/05
7/06 dx mets to vertebrae, pelvis & chest lymph nodes
8/06 - 10/06 tamoxifen, herceptin, oophorectomy & zometa
11/06 PET/CT showed continued bone mets, new spot on liver
12/06 began taxotere/herceptin 1x/3 weeks,
2/07 - 2-08 NED!
3/08 progression, start taxol/herceptin weekly, monthly zometa
8/08 start ai & herceptin
12/08 - progression, start weekly navelbine/herceptin thru 6/09 & monthly zometa
7/09 - PET/CT showed improvement in spine, but 2-3 lymph nodes in chest became active
9/09 - 11/09 - weekly abraxane/herceptin
12/09 - PET/CT - chest lymph nodes resolved, progression in spine & pelvis
2/10 - 6/10 - start tykerb/xeloda, progession in spine & pelvis
7/10 - start taxotere/carboplatin/herceptin

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Old 01-13-2007, 10:13 AM   #8
CLTann
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Posts: 476
I decided that a switch from Arimidex to Femara is the first thing on my agenda. My Onc agreed with me. Therefore, the switch took place yesterday. I hope in a few weeks, I would be able to feel better. As for bone scan, I did the test only three month ago and the result was negative. Since cancer is not an overnight development, one would expect that the scan would have shown some lesion if the mets is the culprit. Thank all of you who have kindly replied my question.
__________________
Ann

Stage 1 dx Sept 05
ER/PR positive HER2 +++ Grade 3
Invasive carcinoma 1 cm, no node involvement
Mastec Sept 05
Annual scans all negative, Oct 06
Postmenopause. Arimidex only since Sept 06, bone or muscle ache after 3 month
Off Arimidex, change to Femara 1/12-07, ache stopped
Sept 07 all tests negative, pass 2 year mark
Feb 08 continue doing well.
Sep 09 four year NED still on Femara.
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