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Old 08-08-2014, 01:54 PM   #1
hestko76
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Location: Las Cruces, NM
Posts: 103
Could I have bone mets?

I have bone pain in both thigh bones (femurs) and sometimes my hips hurt. Is this how bone mets are first felt? I've got a call into my oncologist. I was just there in July, and had all blood work done and CA27 29 done. All results were fine. Please all you members that had her2 and then got bone mets, please respond.
I hope there is another explanation.......
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Helen
dx 10-31-11
Stage 1 Grade 3 (7mm tumor)
Lumpectomy 11-18-11
Er- Pr- Her2+++
0/5 nodes - no positive lymph nodes
Port installed 1-6-12
6 Rounds TCH
Rad. 33 tx
Last herceptin 12-10-12
Port removed 1-3-13
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Old 08-08-2014, 02:20 PM   #2
tricia keegan
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Re: Could I have bone mets?

Helen,

I don't have bone mets but have had the usual scares and lots of scans since my own dx in '05, the usual rule of thumb is that any pain or symptom lasting more than 2-3 weeks needs to be investigated, I find by the day before I'm due to call my Onc the pain goes lol..its probably nothing but a scan can put your mind at ease but its best not to have too many of those either. I spent two months a few years ago having lots of scans and then waiting for the spot to grow so it could be biopsied, instead it disappeared!
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Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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Old 08-08-2014, 08:59 PM   #3
CoolBreeze
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Re: Could I have bone mets?

My mets are in liver, not bone. However, I have had pain in my hips, thighs and knees and back since my initial treatment. In fact, that is how my liver mets were found - I had a bone scan looking for why my back was hurting, which showed nothing so my oncologist did a CT. Even though we weren't looking at the liver, it showed up.

It took a while to discover the reasons, but my back hurts because of the recon and mastectomy which have caused muscle spasms in my chest that affect my back. (I can't feel it in the chest). It is hard to tell the difference between muscle and bone pain when it's lower back. No explanation for thighs and knees but I no longer wear heels because of the strain.

I don't know why oncologists don't warn patients that bone pain is a probability post cancer treatment. I see it and hear about it so often - they must too! Especially for those on estrogen blockers or who have gone into menopause because of treatment.

These treatments we do are very toxic, especially on our blood, and problems can crop up but it doesn't mean a relapse. Aching is so common that there has to be an explanation - blood marrow working OT after chemo maybe? I don't know, that's just a guess.

I also think we are more susceptible to normal wear and tear. So maybe you did something that strained your muscles or body in some way that you didn't realize. Either way, if it lasts it needs to get it checked. I'm glad you called your doctor but of course, the cycle of worry begins. I hope he reassured you.

My guess - I think since you are feeling it in both sides it is unlikely to be mets. Bone mets usually isn't even.......for whatever that is worth. Because of my online presence I hear a lot of stories but I'm not a doc and I could be wrong.

Please let us know what the doctor says and *big hugs* to you.
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http://butdoctorihatepink.com

08/17/09 Dx'd.
Multifocal/multicentric IDC, largest 3.4 cm, associated ADH, LCIS, DCIS
HER2+ ER+/PR- Grade 3, Node Negative

10/20/2009: Right mastectomy, reconstruction with TE
12/02/2009: Six rounds TCH, switched to Taxol halfway through due to neuropathy
03/31/2010: Finished chemo
05/01/2010: Began tamoxifen, the worst drug ever
11/18/2010: Reconstruction completed
12/02/2010: Finished herceptin
05/21/2011: Liver Mets. Quit Tamoxifen
06/22/2011: Navelbine/Zometa/Herceptin
10/03/2011: Liver Resection, left lobe. Microwave ablation, right lobe - going for cure!
11/26/2011: C-Diff Superbug Infection, "worst case doctor had seen in 20 years"
03/28/2012: Progression in ablated section of the liver - no more cure. Started Abraxane, continue herceptin/zometa
10/10/2012: Progression continues, started Halaven, along with herceptin and zometa.
01/15/2013: Progression continues, started Gemzar and Perjeta, an unusual combo, continuing with herceptin and zometa
03/13/2013: Quit Gemzar, body just won't handle it. Staying on herceptin, zometa and perjeta.
04/03/2013: CT shows 50% regression in tumor, so am starting back on Gemzar with dose reduction, staying with perjeta/herceptin/zometa. Can't argue with success!
05/09/2013: Discussing SBRT with Radiology due to inability of bone marrow to recover from chemo.
06/07/2013: Fiducial placement for SBRT
07/03/2013: Chemo discontinued, on Perjeta, Herceptin and Zometa alone
07/25/2013: SBRT (gamma knife) begins
08/01/2013: SBRT completed
08/15/2013: STABLE! continuing with Perjeta, Herceptin, Zometa
06/18/2014: ***** NED!!!!***** continuing with Perjeta, Herceptin, Zometa
01/29/2014: Still NED. continuing with Perjeta, Herceptin. Zometa lowered to every 3 months instead of monthly.
11/08/2015: Progression throughout abdomen and lungs. Started TDM-1, aka Kadcyla. Other meds discontinued. Remission was nice while it lasted.

5/27/18: Stable. Kadcyla put me right back in the barn. I have two teeny spots on my lungs that are metabolically inactive, and liver is clean.

I’m beating this MFer. I was 51 when this started and had two kids, 22 and 12. Now I’m 60. My oldest got married and trying to start s family. My youngesg graduates from Caltech this June. My stepdaughter gave me grandkids. Life is fantastic.
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Old 08-09-2014, 07:09 AM   #4
hestko76
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Re: Could I have bone mets?

Thanks Ann and Tricia for your encouraging words. I drive almost 300 miles for my oncologist appointments (in AZ), so she suggested that I call my primary care doctor and get in to see her asap, so she can give orders to write a script for a bone scan here in NM. My oncologist notes from my July appointment say that I have no symptoms, no complaints, and all blood work was normal. So, insurance would not approve a bone scan until symptoms were noted during an office visit. So, first thing Monday, I will call for an appointment with my primary care physician. Hopefully, by Friday, I'll have a bone scan. If something is found, I'll be back for treatment in AZ. and so it goes......
__________________
Helen
dx 10-31-11
Stage 1 Grade 3 (7mm tumor)
Lumpectomy 11-18-11
Er- Pr- Her2+++
0/5 nodes - no positive lymph nodes
Port installed 1-6-12
6 Rounds TCH
Rad. 33 tx
Last herceptin 12-10-12
Port removed 1-3-13
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Old 08-09-2014, 07:28 AM   #5
Cath
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Posts: 67
Re: Could I have bone mets?

Hi Helen,

I seem to have the same symptoms as you. My lower back, hips and upper thighs hurt terribly. My onc ordered a bone scan and CT 3 months ago but all it showed was a lot of degenerative disease. My primary physician has ordered a couple anti inflammatory drugs but they haven't helped and hurt my stomach. He would do injections but I have so many places that hurt that I don't know where he would begin. Pain is not going away but getting worse. So I see my onc in a couple of weeks so will see what he has to say. I think the chemo damaged something or it is my Arimidex I'm on that is causing the pain but who knows? I do know before I had the bone scan and CT that I was afraid of bone mets so I know how you are feeling. You take care and I hope your scans turn out okay.
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Cathy

Routine mammogram 6-29-11
Ultrasound 7-5-11
Biopsy 7-11-11
Right modified radical mastectomy 7-18-11 with 7 out of 24 lymph nodes positive
Stage IIIC, Grade 3, Estrogen + 100%, HER2 +
Had 5 tumors in right breast, none of which showed up on the mammogram (What showed up on mamm was a lymph node)
Lymphatic vascular invasion
Lymphedema right arm (started shortly after surgery)
TCH started August 15, 2011
Finished Taxotore and Carboplatin 11-28-11
Radiation x 36 - finished Feb. 3, 2012
Herceptin weekly for 1 year - finished 8-13-12
Arimidex started Feb. 2012 for 5 years
Left prophylactic total mastectomy March of 2012

Arimidex stopped August 2014 due to side effects
Aromasin started Sept. 2014
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Old 08-09-2014, 01:51 PM   #6
tricia keegan
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Re: Could I have bone mets?

Helen do remember that a bone scan shows everything and not just bone mets, arthritis and even old injuries can cause hot spots, in my case it was followed by an MRI, Pet/ct that were all inconclusive, followed up two months later with repeat scans but nothing was found and hoping you have the same result.
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Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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Old 08-09-2014, 04:17 PM   #7
chekmark
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Re: Could I have bone mets?

During and after treatment I had terrible bone and joint pain, it got worse when I was on the herceptin only and then I started Femara and holy cow just when I thought it couldn't get worse it did. I started to take glucosamine and calcium and within 2 weeks I was almost pain free. Always check with your doctor first to make sure it is safe to take anything. I, like Coolbreeze hear this complaint a lot. If u need piece of mind get the scan, good luck and keep us posted.

Darlene
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DX Sept 30 2010 at the age of 49. Oh crap! 1.5 cm idc, stage 1 grade 3 er/pr+, her2+ no lymph nodes, mastectomy Oct/10. Started 6 rounds of TCH Dec/10 and will continue herceptin until Nov /11 and just started femara.
Stray kitten found my lump while I was playing with it. It is now my pet and my dog is not real happy about that.
Mammo good
last herceptin 11/21/11 YAY
reconstruction 12/09/11
Chapter closed 12/10/11, hopefully, fingers crossed
Bone scan, chest xray, clear
04/27/12 Expander removed, implant put in, ahh sigh of relief, much more comfortable
Sept 30, 2014, 4 years NED
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Old 08-09-2014, 05:50 PM   #8
Catia
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Re: Could I have bone mets?

Hi,
I don't know what age you are but you could be experiencing arthritic pain. I am also living here in Las Cruces, NM and with the rains and rise in humidity and having had chemo, you might just feel that pain now when you didn't before...
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Dx: April1st (yes April Fool's Day!), 2011
ER-/PR-/HER2+++ Tumor grade 3 size:1.6mmx1.2mm
Micromet to sentinel node, 5 auxiliary nodes were clear, stage 1B
April 13th, 2011 Double Mastectomy, no immediate reconstruction
May 2011 to Nov, 2011 chemo AC-TH plus
Herceptin until Sep 2012
11/2012 Began GP-2 vaccine at MD Anderson in Houston (monthly shots until April 2013), now receiving booster shots every six months

Began natural breast reconstruction with BRAVA procedure in Oct 2012
With Dr. Khouri at the Miami Breast Center.

Oct 2012 First fat graft
Jan 2013 Second fat graft
March 2013 Third fat graft
July 2013 Final touch-up with nipple reconstruction
November 2013: Vaccine Booster #1
January 2014 Nipple tatooing
April 2014: Vaccine Booster #2
October 2014: Vaccine Booster #3
April 2015: Vaccine Booster #4 (trial finished)
Dec 2015: Scar treatment with Kenalog and laser

Update: 2022 still in the clear and the GP-2 vaccine trial I participated in is moving to 3rd and final phase. None of the women that are in it have relapsed!!!
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Old 08-09-2014, 06:09 PM   #9
annettchen
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Re: Could I have bone mets?

I have bone mets - had them off the bat on first diagnosis. One in T10/11, and possibly one in my shoulder. I do have back pain (had that for a while, at least a year prior to diagnosis). And my hips occasionally hurt. However, I feel like the back pain got worse during and after chemo, so it's possibly a chemo side effect. I also have muscle pain in my arms and legs. I finished THP some weeks ago, restaging indicated "healing metastatic lesions"; now on Herceptin / Perjeta only.

In my case the back pain is not where the met is - back pain feels like it originates T4, and according to scintigram, CT and MRI, there's nothing on T4 (or thereabouts).

I have also been told that scinti shows any area of increased activity in the bone, which can be other things like degenerative issues etc...

I would go and have it checked out for peace of mind. It's likely nothing... Wish you luck for the scan!
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Annette
----------------------------------------
03/2014: Diagnosed with ER/PR-, HER2+++ MBC (bone mets, oligometastatic)
04/2014: Started 6 cycles of "PHD" (Perjeta, Herceptin, Docetaxol)
07/2014: Finished 6 cycles of PHD; restaging; 2 bone mets are sclerotic - looks like Herceptin and Perjeta is working
10/2014: STABLE!
01/2015: STABLE!
04/2015: STABLE!
08/2015: STABLE!
12/2015: BRAIN METS. BODY STABLE.
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Old 08-09-2014, 06:19 PM   #10
hestko76
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Posts: 103
Re: Could I have bone mets?

Tricia, Cathy, and Catia..... I hope the bone scan shows nothing more than arthritic pain, and not mets. I am 61.... almost 62, so I guess it could be arthritis. I do walk 2 miles 6 days a week, and never have had pain. But at my age, I guess it could start.

Darlene, I do take calcium twice a day and have since I was 50, along with Vitamin D. I only took glucosamine during chemo.

I thought I was lucky with a Stage 1 diagnosis, even though I know that this cancer can jump to Stage 4 in an instant. Thanks for all your comments and concerns. I appreciate hearing from you all....
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Helen
dx 10-31-11
Stage 1 Grade 3 (7mm tumor)
Lumpectomy 11-18-11
Er- Pr- Her2+++
0/5 nodes - no positive lymph nodes
Port installed 1-6-12
6 Rounds TCH
Rad. 33 tx
Last herceptin 12-10-12
Port removed 1-3-13
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Old 08-09-2014, 11:52 PM   #11
sassy
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Re: Could I have bone mets?

Helen,

Are you by chance taking a bisphosphonate like Boniva, Reclast, Zometa, etc?
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Rhonda (Sassy)
dx age 45
DX 2/15/05 Stage IIb (at surgery)restaged IIIa
Left mast .9cm tumor 5 of 14 nodes
Triple Positive
4 DD A/C
12 Taxol/Herceptin
33Rads
Strange infect mast site one year aft surg, hosp 1 wk
Herceptin for total of 18 months
Lupron Monthly 4 yrs
Neurontin for aches, pains and hot flashes(It works!)
Ovaries removed 11/09 stop Lupron and Neurontin
Arimidex 6 yrs (tried Femara, no SE improvement)
Tried Exemestane-hips got so bad could hardly walk
Back to Arimidex for year seven
Zometa 2X Annual for 7years, Lasix
Stop Arimidex 5/13
Stop Zometa 7/13-Bi-lateral Stress Fractures in Femurs from Zometa
5/14 Start Tamoxifen
3/15 Stem cell transplant to stimulate femur bone growth/healing
5/15 Complete fracture of right femur/Titanium rods both femurs
9/16 Start Evista stopTamoxifen
3/17 Stop Evista--unwelcome side effects!
NED and no meds.......
14YEARS NED!
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Old 08-10-2014, 05:42 AM   #12
hestko76
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Re: Could I have bone mets?

Rhonda,
No I'm not..... That might explain bone pain, if I was....
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Helen
dx 10-31-11
Stage 1 Grade 3 (7mm tumor)
Lumpectomy 11-18-11
Er- Pr- Her2+++
0/5 nodes - no positive lymph nodes
Port installed 1-6-12
6 Rounds TCH
Rad. 33 tx
Last herceptin 12-10-12
Port removed 1-3-13
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Old 08-10-2014, 03:05 PM   #13
tricia keegan
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Re: Could I have bone mets?

keep us posted Helen and sending good wishes to you!
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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