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06-04-2013, 11:41 PM
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#1
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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Hips are Good--Femurs not so much
After my trip through the world of AI's in an attempt to discover the good, the bad and the ugly of each, I decided to take an AI holiday and try to get my hips back in working order after exemestane basically turned them into non-functioning parts of my anatomy.
Fast forward a year (ok, not fast with THOSE hips) and I felt like my hips were better, but still having problems. I would get to the point of almost walking normally, then any little stumble, hard step or slight impact would send me back to hobbling with pain running down my leg(s). So I finally asked my onc for a referral to an orthopedist. I wanted someone who was familiar with all my treatment and the offending side effects.
X-rayed the hips, consult with the orthopedist, hips are great--YEA!!
I have bilateral stress fractures in both femurs. Major bummer.
Side effect of long term use of bisphosphonate--Zometa. Bone mineral density is good, the fractures are a fairly well known anomaly. Textbook case.
So now I have to figure how best to recover from these fractures. Otho is going to consult with onc. Bisphosphonates out. Maybe add Forteo.
Anyone have any experience with this. Any knowledge you can share?
__________________
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.......
14 YEARS NED!
Last edited by sassy; 06-04-2013 at 11:45 PM..
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06-05-2013, 05:11 AM
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#2
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: Hips are Good--Femurs not so much
Hi Sassy
Sorry to hear of the problem hips. I totally understand how it feels to have the stress fractures. Last Xmas I had the same issue which was very painful. Unfortunately mine turned out to be due to chemo and ? Herceptin induced osteoporosis so now on meds for this! Hope you get some good suggestions from the docs to help with this.
Ellie
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06-05-2013, 10:14 AM
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#3
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: Hips are Good--Femurs not so much
O-oh, I've been taking exemestane since November ...
Hope your doctor will figure out ways to heal the femur soon.
Sending you good vibes...
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement （600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa
Advocacy is a passion .. not a pastime - Joe
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06-05-2013, 10:29 AM
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#4
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Senior Member
Join Date: Oct 2012
Posts: 645
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Re: Hips are Good--Femurs not so much
Sorry to hear about the stress fractures in your femur. My mother was on Fosamax for years until she fractured her femur (really bad fracture).
All the AIs are tough on the bones. I was on Femara for 5 years and just started exemestane last week due to my recurrence. Not looking forward to the creaking hip syndrome. Especially since I am 3 yrs older!
Forteo is supposed to work really well but I wasn't a candidate (osteopenia vs. osteoperosis)
__________________
March, 2000: 48, Post menopausal (5 yrs HRT) Left breast, IDC 3mm/DCIS 1.6cm, ER+/PR-/Her2+++, mod differentiated, MIB low, lumpectomy, node neg via SNB, rads=33 Stage 1a
June, 2000: Tamox 4.5 years,Femara for 5 years (end in Jan. 2010)
Sept, 2012: 61, Via mamm, ultrasound, biopsy, right breast, 2.3cm tumor, ER+/PR-/Her2+++, poorly diff, KI67 60-70%
BRCA 1 and 2 negative
October, 2012: Bi Mast with tissue expanders, port placement
Final Path: IDC 2.8cm, DCIS, 1/4 sentinal nodes positive (@#$%). Stage IIB
Nov 29, 2012: Begin TCH/6x/every 3 wks, H for 1 year/every 3 weeks.
March 14, 2013: Finished chemo
April 9, 2013: Begin radiation 28x
May 22, 2013: Finished rads
June 1st, 2013: Started Aromasin for 5 yrs.
July 15, 2013: Switched to Letrozole (Femara). Probably for the rest of my life
October 16, 2013: Exchange surgery
October 31, 2013: Finished Herceptin
December 5, 2013: Port removed
Glad this year is over!
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06-05-2013, 10:36 AM
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#5
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Senior Member
Join Date: Oct 2006
Location: Southern California
Posts: 900
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Re: Hips are Good--Femurs not so much
Hi Sassy,
So sorry that you are going through such a painful time. I hope you find a solution soon.
I don't have any experience with Forteo, but thought I would share my experience with my bone health. I was on Tamoxifen for 2 yrs, then Femara for 4 yrs. Due to my osteopenia, I was receiving Zometa every six months. I was not improving so my onc and surgeon decided to take me off of Femara and Zometa and put me on Evista (raloxifene) to strengthen my bones. It is a SERM just like Tamoxifen, but for post-menopausal women. There have been several studies done (STAR, MORE) that show Evista promotes bone health and may prevent fractures. While it has not been proven to prevent recurrence of breast cancer, it has been used in post menopausal women at risk of developing breast cancer.
I did not really have many side effects when I was on Tamoxifen or Femara and the same goes for Evista. I do get leg cramps, which are a possible side effect, but something that I can deal with. I have only been on Evista for a little more than a year so I don't know if my osteopenia has improved or not. I'm sure my onc will order another bone density test at my next appointment.
Best of luck finding a solution to your problem.
__________________
Gerri
Dx: 11/23/05, Lumpectomy 12/12/05
Tumor 2.2 cm, Stage II, Grade 3, Sentinel Node biopsy negative
ER+ (30%) /PR+ (50%), HER2+++
AC X 4 dose dense, Taxol X 4 dose dense
Herceptin started with 2nd Taxol, given weekly until chemo done
then given every 3 weeks for one year ending on March 16, 2007
Radiation 30 treatments
Tamoxifen - 2 yrs (pre-menopausal)
May 2008 - Feb 2012 Femara
Aug 2008 - Feb 2012 Zometa every 6 months
March 2012 - Stop Femara, now Evista for bone strengthening
********** Enjoy the little things, for one day you may look back and realize they were the big things. - Robert Brault
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06-05-2013, 12:14 PM
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#6
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: Hips are Good--Femurs not so much
Shoot! Sassy, sorry to learn of this further complication with your legs. You already suffered a stress fracture in your foot last year. Good move getting a new specialist to see.
The only member here I can recall on Forteo is SuzanW. But I think there is at least one thread on this drug, with others either starting it or interested.
Guess I lucked out with all the Zometa I was dosed with EVERY 3 WEEKS for quite some time! No problems with my jaw or elsewhere.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.
MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
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.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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06-05-2013, 02:10 PM
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#7
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Senior Member
Join Date: Aug 2011
Location: Philly Suburbs
Posts: 1,709
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Re: Hips are Good--Femurs not so much
Sheesh!
Life is never easy for us, is it?!!
I hope your docs find a way to manage the pain while you heal. Thank goodness you spoke up!
Sending healing vibes your way...
Denise
__________________
1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
“ Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. ” – Cavett Robert
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06-05-2013, 02:23 PM
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#8
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Senior Member
Join Date: Aug 2006
Posts: 79
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Re: Hips are Good--Femurs not so much
I have been on some type of bisphosphonate for almost 20 years. I have extensive bone mets. I'm still on the trial of TDM1. Last summer the fifth metatarsal bone in my foot fx. While just walking. I also had a pathological fx. Of the acetabulum in my hip. I am concerned about the long tErm use of these drugs but my onc. Is concerned about stopping them. Does anyone have any experience with this situation?
Kathy T.
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06-05-2013, 02:42 PM
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#9
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Senior Member
Join Date: Apr 2008
Location: Sunny San Diego
Posts: 2,214
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Re: Hips are Good--Femurs not so much
Well ouch Sassy!
I don't have any sophisticated advice. Maybe eat lots of dark green veggies like spinach and kale. Which you are probably already doing.
I'm glad that you got the problem diagnosed and hope that you and your medical team can come up with a good plan to get you healed up and pain free.
__________________
Diagnosed 2007
Stage IIb Invasive Ductal Carcinoma, Pagets, 3 of 15 positive nodes
Traditional Treatment: Mastectomy and Axillary Node Dissection followed by Taxotere, 6 treatments and 1 year of Herceptin, no radiation
Former Chemo Ninja "Takizi Zukuchiri"
Additional treatments:
GP2 vaccine, San Antonio Med Ctr
Prescriptive Exercise for Cancer Patients
ENERGY Study, UCSD La Jolla
Reconstruction: TRAM flap, partial loss, Revision
The content of my posts are meant for informational purposes only. The medical information is intended for general information only and should not be used in any way to diagnose, treat, cure, or prevent disease
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06-05-2013, 05:14 PM
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#10
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Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
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Re: Hips are Good--Femurs not so much
I did daily injections of forteo for 2 years. I had (still do!) severe osteoporosis. Arimidex was really making a bad situation worse. In the 2 years I had an 18% increase in bone density. My rheumatologist was amazed. This was an excellent result. I still have osteoporosis in my hips, my spine went from severe osteoporosis to osteopenia. Then I had one infusion of Zometa to «set» the bone, prevent more loss. I had taken oral bisphosphonates for 10 years prior to my cancer dx, also hormone replacement therapy for 10 years.
The forteo was well tolerated. Inconvenient as it needs to be kept refrigerated, and I travel a lot! AND...my insurance co. would not pay. It is very pricey. I paid for it and am very glad I did.
__________________
 Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year
as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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06-05-2013, 05:33 PM
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#11
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Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
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Re: Hips are Good--Femurs not so much
Hi there, Sassafras! I'm sorry to hear about your femur problems, but I'm glad your hips are good. That could be a really painful issue to deal with. I'm sure you will deal with this in your usual grab-the-bull-by-the-horns perky go-getter way. You go, girl!
__________________
For Nicola
Last edited by Bill; 06-05-2013 at 05:35 PM..
Reason: I deleted an inappropriate comment about her hips looking good.
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06-05-2013, 06:23 PM
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#12
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Re: Hips are Good--Femurs not so much
Just wanted to say "Hi Sassy!" Sorry you are going through this.
Hugs...
Mary Jo
__________________
"Be still and know that I am God." Psalm 46:10
Dx. 6/24/05 age 45 Right Breast IDC ER/PR. Neg., - Her2+++ RB Mast. - 7/28/05 - 4 cm. tumor Margins clear - 1 microscopic cell 1 sent. node No Vasucular Invasion 4 DD A/C - 4 DD Taxol & Herceptin 1 full year of Herceptin received every 3 weeks 28 rads prophylactic Mast. 3/2/06
17 Years NED
<>< Romans 8:28
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06-05-2013, 11:16 PM
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#13
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Senior Member
Join Date: Dec 2006
Location: Oregon
Posts: 715
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Re: Hips are Good--Femurs not so much
Sassy, Your picture is so cute, I never picked up on the fact you were having trouble with your hips. I am so sorry and I hope they can find a way for these breaks to heal. My best to you. (these drugs are great, but sort of sneaky)
Thinking of you, 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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06-06-2013, 12:36 AM
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#14
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Senior Member
Join Date: Dec 2011
Posts: 585
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Re: Hips are Good--Femurs not so much
Oh my gosh..BOTH femurs? ((hugs)) Im so sorry. I hope they gave you some good pain meds. I don't have any experience with something like this, but Im sure sending you prayers and lots healing energy.
__________________
Diagnosed in October 2011 Stage IV with metastasis to liver.
January 2012 after double mastectomy, started taxotere, carboplatin and herceptin.
Clear.
December 2012 was diagnosed with five brain mets, and had whole brain radiation.
Around July 2014 two mets in brain, one a residual spot and one new one growing in size. Received Cyberknife on both areas
Clear/NED
April 2015 remain NED
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06-06-2013, 07:55 PM
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#15
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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: Hips are Good--Femurs not so much
Sheesh, Rhonda, this sucks. I recommend a good porter or a nice chocolate stoudt (guessing you still harbor a fondness for a good brewski?). What will the plan be to ease away those stress fractures? Will you have to further limit your activity? If so, I am prepared to recommend a good porter or stoudt (ok, it's summer--throw in a nice light ale), a nice cushy recliner, and a remote with brand new batteries.
In short, I'd milk this for all its worth and have a lazy summer!
__________________
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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06-06-2013, 10:50 PM
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#16
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Senior Member
Join Date: Feb 2007
Location: Cordoba, Mexico
Posts: 672
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Re: Hips are Good--Femurs not so much
My dear Rhonda, hope you feel better soon. Take it easy! Hope to see you soon again and in very good shape. Hugs to you! And lots of love.
Paty
__________________
Dx. June 30th, 2006 at age 43
Lumpectomy rt breast
2.2 cm tumor, 13 nodes all negative
ER-PR+,her2+++
6 FAC
32 Rads
Dx. Lung fibrosis due to radiation
Ended 1 year herceptin in March, 2008
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06-07-2013, 06:37 PM
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#17
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Senior Member
Join Date: Dec 2008
Location: Southern Indiana
Posts: 455
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Re: Hips are Good--Femurs not so much
Hi, Sorry to hear of your trouble. I had the same type problem moving and it turned out to be my hips. I had both replaced and am so much better. Keep us posted.
__________________
Alice
04/08 age 50 III IBC Her2+++ ER/PR-8cm 14/14 Double M, Body and Brain CT/PET clear, ? on spine,Muga 53
06/08, 4 A/C, Neulasta
08/08, Herceptin/tax 12 every week
10/08, CT/PET clear, ? on pelvis, hips, MUGA 43, started Enalaprial for heart, Herceptin every 3 weeks
11/08 33Rads; 12/08 MUGA 48
2/09 MRI spine and bone scan, old mets to spine, Chest x-ray, blood work, IV NED,regular CPAP use,Zometa x6, first -flue like symptoms 2 days;Herceptin x3; stage 2 lymphoedema..sleeve and glove
4/09 Brain MRI - CLEAR; MUGA 54
7/09 chest ultrasound,
10/09 PET, brain and spin MRI NED Herceptin only. MUGA 59!!!
1/11 Hip replacement 7/11 Hip 2 replacement
4/12 4 years!! Herceptin
6/12 start reconstruction finish in 12/12
2/14 Herception - 6 years!!!
1 Corinthians 10:13 "No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you
can stand up under it."
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