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Old 02-28-2015, 10:52 AM   #1
thinkpositive
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Could this be a sign of bone mets?

I've noticed that my hips get sore if I sleep on my side for a long period of time. Could this be a sign of bone mets? Anybody else had this issue? I'm 56 and hike about 25 miles a week and have had no pain in my hips or any place else other than what I experience when I sleep.
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8/2013 Diagnosed IDC Left Breast ER-/PR-/HER2+ Stage 3C, DCIS ER+/PR+/HER2- Right Breast (54 yr)
8/2013 PET/CT scan shows mass in uterues and suprclavicular nodes
8/20/13 Begin 6 rounds TCH chemo, Perjeta added for rounds 4-6
9/2013 After 1st round of chemo, mass in neck and breast no longer able to feel
11/2013 Hysterectomy, mass from PET/CT scan not cancer (adenomylosis)
12/2013 Finished chemo
1/2014 Double mastectomy with chest expanders
1/2014 Pathology report from surgery and SNB show complete pathological response!
3/2014 Finish IMRT radiation
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8/2014 Completed 1 yr of Herceptin
10/2014 exchange surgery expanders removed implants placed
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Old 03-01-2015, 10:00 AM   #2
Lucy
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Re: Could this be a sign of bone mets?

My initial reaction was that I have pain in my lower back when sleeping but I take anastrazole which causes joint pain. You being ER- you wouldn't be taking that so that wouldn't be the case for you.

How long has it been going on? Does it get better when you get up and moving? It sounds like it's not constant . . . is that the case?

I don't know how bone mets exhibit themselves so I can't really answer your question but hopefully someone else will speak up.

I'm sorry you're having to deal with this, I hope it gets better.
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Old 03-01-2015, 10:10 AM   #3
thinkpositive
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Re: Could this be a sign of bone mets?

Hi Lucy,

Thanks for the response. I only have the pain when I sleep on my side for a few hours. Once I move, the pain goes away. I never have pain any other time. If it weren't for fear of bone mets I wouldn't think anything of it.

Take care
__________________
8/2013 Diagnosed IDC Left Breast ER-/PR-/HER2+ Stage 3C, DCIS ER+/PR+/HER2- Right Breast (54 yr)
8/2013 PET/CT scan shows mass in uterues and suprclavicular nodes
8/20/13 Begin 6 rounds TCH chemo, Perjeta added for rounds 4-6
9/2013 After 1st round of chemo, mass in neck and breast no longer able to feel
11/2013 Hysterectomy, mass from PET/CT scan not cancer (adenomylosis)
12/2013 Finished chemo
1/2014 Double mastectomy with chest expanders
1/2014 Pathology report from surgery and SNB show complete pathological response!
3/2014 Finish IMRT radiation
8/2014 Fat transfer to radiated breast
8/2014 Completed 1 yr of Herceptin
10/2014 exchange surgery expanders removed implants placed
6/2015 3D nipple and areola tattoos
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Old 03-01-2015, 01:56 PM   #4
StephN
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Re: Could this be a sign of bone mets?

Maybe you need a new mattress? Once we changed to a Sleep Number bed (really just an air mattress!) my hubby and I can sleep on our sides without any trouble.

You may be pressing a nerve somehow causing the pain. Bone mets is down the list of causes for sleep position related pain.

Hope you can figure it out soon.
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Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
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36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
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Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
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Old 03-01-2015, 02:42 PM   #5
SoCalGal
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Re: Could this be a sign of bone mets?

What Steph said! Get a new bed. To test it out, you can put a tempurpedic thingy/mattress topper/egg crate under your side of the bed. I think as we age, our bones need more TLC. As far as I know, cancer bone pain does not come and go. And for me, thankfully, I've no bone pain although have alleged bone mets.
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2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
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Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
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May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
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Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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Old 03-01-2015, 03:53 PM   #6
Saygoon
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Re: Could this be a sign of bone mets?

I have bone mets and yes, the pain usually doesn't go away without pain meds, but wouldn't hurt to let your Onc know and consider a bone scan if nothing else to ease your mind.
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DX March 2012
Stage IV w/ 5 bone mets to spine 2 on ribs
Herceptin, Zometa, Taxotere and Anasterole and of course radiation
2/14/2014 2 mets on pelvic bone
Stop Anasterole continue on Herceptin and Zometa start radiation (again)
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6/01/2014 Great news! Rib mets gone, 4 of 5 spine mets showing new bone growth and pelvic mets shrinking.
8/28/2014 T11 on spine is being stubborn started Perjeta, Herceptin, Zometa and Taxol - goodbye hair!
9/04/2014 Tomo therapy - pain finally gone
1/3/2015 - starting New Year out as still stable. Feeling positive
2/23/2015 - problems with left leg, bone met flaring up - MORE radiation Whew!
2/24/2015 Stress fracture in right side of pelvic - (great just great) back to wheelchair then walker then.....
2/26/2015 Off Taxol!! Still on Perjeta, Herceptin and Hormone Blocker starting to feel a little more human.
4/10/2015 Cancer has spread to spinal fluid - not sure where I go from here
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Old 03-01-2015, 04:17 PM   #7
rhondalea
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Re: Could this be a sign of bone mets?

I had the same pain. Onset was concurrent with an ill-advised trial of Namenda, but it persisted long past the time the drug was out of my system. I believe the Namenda exacerbated the problem, but it did not cause it.

I believe I had greater trochanteric pain syndrome. My mind definitely went to mets, but the pain eased in the daytime when I was up and around, so I looked for another cause. After two or three months (which seemed like forever), the pain stopped, and and I can sleep on my side again.

Here's a link:

Greater Trochanteric Pain Syndrome

Here is one particularly reassuring excerpt:

Quote:
It is a common condition. It is more common in women than in men. It most often occurs in people who are aged over 50 years. However, it can also occur in younger people, especially runners. It is not clear exactly how many people develop this condition. However, one US study of 3,026 people aged from 50-79 years found that greater trochanteric pain syndrome was present in nearly 1 in 4 women and nearly 1 in 10 men.
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Old 03-01-2015, 04:36 PM   #8
thinkpositive
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Re: Could this be a sign of bone mets?

Thank you all for your responses. I really appreciate it. My mattress is pretty old. That may be the culprit. If the mattress doesn't work I will mention it to my onc.

Thanks again!
__________________
8/2013 Diagnosed IDC Left Breast ER-/PR-/HER2+ Stage 3C, DCIS ER+/PR+/HER2- Right Breast (54 yr)
8/2013 PET/CT scan shows mass in uterues and suprclavicular nodes
8/20/13 Begin 6 rounds TCH chemo, Perjeta added for rounds 4-6
9/2013 After 1st round of chemo, mass in neck and breast no longer able to feel
11/2013 Hysterectomy, mass from PET/CT scan not cancer (adenomylosis)
12/2013 Finished chemo
1/2014 Double mastectomy with chest expanders
1/2014 Pathology report from surgery and SNB show complete pathological response!
3/2014 Finish IMRT radiation
8/2014 Fat transfer to radiated breast
8/2014 Completed 1 yr of Herceptin
10/2014 exchange surgery expanders removed implants placed
6/2015 3D nipple and areola tattoos
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Old 03-01-2015, 05:25 PM   #9
hestko76
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Re: Could this be a sign of bone mets?

I had the same hip pain..... even had some in my back. So, my oncologist ordered a bone scan and MRI of my back. Nothing showed up...... I tried a tempurpedic with adjustable hardness and it make my pains worse. So we traded it for a pillowtop firm, and it is ok most nights. Good luck!
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Lumpectomy 11-18-11
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Old 03-03-2015, 10:32 AM   #10
thinkpositive
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Re: Could this be a sign of bone mets?

Thanks for your response. I do think it has something to do with the mattress. The last few nights I slept with a body pillow and had no pain. I try not to think of the worst case scenario (bone mets) when I have weird pains/symptoms but find sometimes I just cant help myself.

Take care
__________________
8/2013 Diagnosed IDC Left Breast ER-/PR-/HER2+ Stage 3C, DCIS ER+/PR+/HER2- Right Breast (54 yr)
8/2013 PET/CT scan shows mass in uterues and suprclavicular nodes
8/20/13 Begin 6 rounds TCH chemo, Perjeta added for rounds 4-6
9/2013 After 1st round of chemo, mass in neck and breast no longer able to feel
11/2013 Hysterectomy, mass from PET/CT scan not cancer (adenomylosis)
12/2013 Finished chemo
1/2014 Double mastectomy with chest expanders
1/2014 Pathology report from surgery and SNB show complete pathological response!
3/2014 Finish IMRT radiation
8/2014 Fat transfer to radiated breast
8/2014 Completed 1 yr of Herceptin
10/2014 exchange surgery expanders removed implants placed
6/2015 3D nipple and areola tattoos
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