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Old 04-01-2011, 10:48 AM   #1
fisch
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Hip/leg pain...

Hello...I'm new to the site, but I've been so inspired by all of you!

I was diagnosed in 2000 with Stage IIb Infiltrating ductal ca...3/10 nodes positive. The tumor was ER negative, PR "slightly positive", and HER2 +++. Mastectomy, (ended up bilateral later in the year), AC and Taxotere.

I've recently been experiencing pain in my left hip and femur...pain is increased at rest (sitting), almost intermittent, and is tolerable.

My regular follow up appointment with my onc is on Wednesday...I will definitely ask for a bone scan.

My concern (almost panic) is obvious...if there are bony mets, we'll conquer as we did before, but has anyone else (who has been dx with bony mets) experienced this type of bone pain?

Again, thank you all so much...this journey (even 11 years out) never gets boring!

Marlene
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Old 04-01-2011, 01:03 PM   #2
BonnieR
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Re: Hip/leg pain...

I have not experienced bone mets but just wanted to stop by and offer support. And remind you that this pain can be MANY other things even though our minds go straight to the worst. Just because we had cancer, we are still elegible for other ailments. (which seems unfair to me!). So try not to worry too much until you are given reason to. I know that is easier said than done.
Keep the faith.
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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!
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Old 04-01-2011, 04:42 PM   #3
Chelee
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Re: Hip/leg pain...

I have bone mets and the pain I had in my hip came and went for a long time. Hip pain can be caused by so many things and usually is. Have you been doing something differently lately that you haven't thought about that might be causing it to hurt? It's just so hard for us that have been dx with bc to not to think the worse. Every time I have a new ache or pain my mind instantly thinks it might be cancer. So I can certainly understand your concern. I know it's not easy but try not to worry. I really doubt it's bone mets. Hopefully Wed. your onc can order a scan and give you peace of mind.

Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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Old 04-01-2011, 05:10 PM   #4
fisch
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Re: Hip/leg pain...

Thank you so much for your answers...I do know that we really shouldn't automatically assume that it's a metastasis, but.......

In any case, I will await my appointment, and my scan, and keep you posted...thanks again!
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Old 04-01-2011, 05:55 PM   #5
Midwest Alice
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Re: Hip/leg pain...

Hi Marlene, I two am experiencing leg pain. I will have a PET soon. I just went back to work after hip replacement and have several projects I will finish up next week.

My hip replecement has helped greatly. I has zero rotation..now I do pretty well. It was not cancer but bone spurs. small spurs all over the ball of my hip. I couldn't stand up stright. By the end of the day I would be really bent over. I hope to have the other hip done this summer.


The pain I am having is on the leg of the bad hip. 3 or 4 inches above my knee. Night is the time it is the most painful. I have downsized to a condo and .... have lifted and moved 8 to10 hours a day... It could be from that. But it is time for scans.

Hope it turns out to be nothing for us both . Stay in touch. Sounds like you will have your scans before me. I guess if my PET would show something I would then have a bone scan???
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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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Old 04-01-2011, 06:07 PM   #6
Jackie07
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Re: Hip/leg pain...

Marlene,

First of all, congratulations on your 11 years triumph over BC.

My Father-in-law has had two hip replacement surgeries on the same side. He feels the discomfort more while 'sitting'. The pain you are feeling is a hip joint problem for sure, but could have been caused by osteoporosis. In either case, you are wise to have it checked out.

I'm sending you good vibes.
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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

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Old 04-02-2011, 03:56 AM   #7
fisch
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Re: Hip/leg pain...

THANK YOU THANK YOU THANK YOU!!! I will keep you posted on my scan results...so happy that I found this site, and all of you!

Marlene
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Old 04-02-2011, 11:32 AM   #8
ElaineM
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Wink Re: Hip/leg pain...

I wonder if an MRI might be better than a bone scan?
An MRI shows alot of things bone scans don't show like soft tissues (muscles etc). It also shows the bones.
Our bodies have all kinds of problems besides cancer.
Hang in there !!
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Old 04-02-2011, 03:40 PM   #9
tricia keegan
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Re: Hip/leg pain...

I agree with Elaine as went through this last year and had an mri after the bone scan followed by a pet/ct, it was sciatica rather than mets thankfully and still suffer it from time to time but think an mri may save you some waiting time!
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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 04-02-2011, 04:26 PM   #10
Chelee
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Re: Hip/leg pain...

I so agree with Elaine and Trish! Ask for a MRI so you can get an answer right away. My story is too long..but let me tell you I did have bone mets to hip my and was told by several onc's that my hip was fine. They were going by regular x-rays, bone scan and PET/CT. I have a bad feeling about my right hip and I put my foot down and told my onc I wanted a MRI. She finally OK'd it and come to find out I was right...I had an impending fracture that could not be seen on my the X-Rays, and scans. I was due to start chemo at the time and that could of cost me some serious problems had my femur broke.

The MRI will give them the information they need and leave out all doubt. Plus save you from more needless waiting and wondering. MRI's are more expensive so they might not be as quick to say yes...but stick to your guns. Good luck and keep us updated.

Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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Old 04-03-2011, 06:45 AM   #11
fisch
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Re: Hip/leg pain...

Thanks again!! I will definitely ask for the MRI, and keep you posted on findings...

I can't tell you how thankful I am to have found you!
__________________
Marlene

Diagnosed in February 2000, 2.5 cm infiltrating ductal, 3/10 postive nodes. Left mastectomy. Tumor was ER -, PR weakly +, HER2 +++. Treated with Adriamycin/Cytoxan, then Taxotere. Herceptin not available at that time.
Dec. 2000: right mastectomy (prophylactic). Reconstructions failed (miserably).
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Old 04-03-2011, 07:11 AM   #12
Midwest Alice
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Re: Hip/leg pain...

When they do an MRI they just do a certain area.. back.. hips.. head.. The PET scan is the entire body from neck to toes? or head..... right? The bone scan is neck to toes?

Pet showes soft tissue, organs/ No bones?

I should know this but have chemo brain. could someone fill me in.

Thanks, Alice
__________________
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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Old 04-03-2011, 03:33 PM   #13
fisch
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Re: Hip/leg pain...

Hi Alice! The bone scan does the entire skeleton, the MRI does specific areas, and the PET will usually do head to mid-thigh. As far as specificity, I'm not totally sure...

I work in a hospital, and from what my Nuclear Med folks tell me, bone scan is more specific than PET if one is having bone pain...MRI will show soft tissue, as well as be able to differentiate reasons for the pain (i.e.: infection, other ortho issues, mets, etc.).

Tale care...hope to talk soon!
Mar
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Marlene

Diagnosed in February 2000, 2.5 cm infiltrating ductal, 3/10 postive nodes. Left mastectomy. Tumor was ER -, PR weakly +, HER2 +++. Treated with Adriamycin/Cytoxan, then Taxotere. Herceptin not available at that time.
Dec. 2000: right mastectomy (prophylactic). Reconstructions failed (miserably).
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Old 04-04-2011, 03:49 AM   #14
Midwest Alice
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Re: Hip/leg pain...

Thanks Marlene,
__________________
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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Old 04-04-2011, 10:07 PM   #15
BonnieR
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Re: Hip/leg pain...

Off topic, but where are you in South Jersey? I am a former Avalon gal! And still love me some cheese steak!
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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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Old 04-05-2011, 09:59 AM   #16
fisch
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Re: Hip/leg pain...

Hi Bonnie! I'm in Vineland (half-way between Philadelphia and Atlantic City). I love the shore...Avalon is a great place!

Coming as an update to my original post: I had my bone scan today. Since I work here, the lead tech did take a look at the films...left knee (not hip or femur!) lit up, as did both shoulders. In her opinion, didn't look like mets...films are in the Radiologist's hands right now...

My oncologist said that if the bone scan was inconclusive, he would order an MRI. I'm relieved, but reserved...

Thanks again for all of you! Take care!
Marlene
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Marlene

Diagnosed in February 2000, 2.5 cm infiltrating ductal, 3/10 postive nodes. Left mastectomy. Tumor was ER -, PR weakly +, HER2 +++. Treated with Adriamycin/Cytoxan, then Taxotere. Herceptin not available at that time.
Dec. 2000: right mastectomy (prophylactic). Reconstructions failed (miserably).
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Old 04-06-2011, 12:59 PM   #17
tricia keegan
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Re: Hip/leg pain...

Sounds like good news so far Marlene, my bone scan was inconclusive too as was the mri, my thinking was no news is good news
__________________
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 04-07-2011, 08:37 AM   #18
fisch
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Re: Hip/leg pain...

Hi Tricia...agreed!! I see the Orthopedist tomorrow morning, and he will be doing the MRI...

Take care, and stay tuned!
Mar
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Marlene

Diagnosed in February 2000, 2.5 cm infiltrating ductal, 3/10 postive nodes. Left mastectomy. Tumor was ER -, PR weakly +, HER2 +++. Treated with Adriamycin/Cytoxan, then Taxotere. Herceptin not available at that time.
Dec. 2000: right mastectomy (prophylactic). Reconstructions failed (miserably).
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Old 07-22-2011, 05:16 PM   #19
Jackie07
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Re: Hip/leg pain...

Marlene,

Found this thread because I've been having right hip pain after pushing the shopping cart in the grocery store for a whole hour. Hubby wanted me to 'exercise', and I tried to rely on my right side more than the left because of left-side weaknesses (caused by the brain surgery).

Wanted to find out how you are doing right now...
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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

Last edited by Jackie07; 07-22-2011 at 06:25 PM..
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Old 07-22-2011, 06:49 PM   #20
KristinSchwick
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Re: Hip/leg pain...

Marlene,
I have a few bone mets in my vertebra and pelvis- very near my SI joint. The pain I experienced at first came and went and responded very well to pain meds, it did hurt to push on the area and got significantly worse with exercise. I basically limped around the house and told myself it was from lifting my son wrong. Unfortunately I was wrong, I had first a bone scan, then a PET scan. My oncologist also brushed it off when I first reported the pain.
On a great note- within a few weeks of starting treatment (oral Tykerb and Xeloda) the pain completely disappeared! When you go to your doctor, be very specific about when the pain started- did it come on gradually? Did it get better with exercise, or worse, does it respond to pain meds, does it hurt to the touch, etc. Those questions and answers should help your doc make important imaging decisions.
__________________
[B]Kristin
Aug 2010: diagnosed stage 3b, 4 mo. after birth of son. 29 yrs old and breastfeeding, ER/PR-, Her-2+ started Neoadjuvant therapy: 4x FEC, 10x abraxane & Herceptin
Feb 2011: L mx with recon. Path. showed only DCIS but 4/10+ nodes.
March 2011: 6 wks rads.
Mother passed, lower back pain.
Late May 2011: Bone mets but organs clear; Tykerb, Xeloda, Xgeva. Stopped Herceptin. Implant infected: removed implant.
October 2011: Bone progression; Gemzar and Carboplatin & restarted Herceptin.
Jan 2012: Progression, re-classified as ER+; Tykerb, Herceptin, Zoladex & Femara. Anti-E is working!
May 2012: ovaries out, markers stable but elevated. Cont. Herceptin, Tykerb, Xgeva & Femara.
Dec 2012: aromasin
Jan 2013: faslodex, herceptin, tykerb
Jun: Kadcyla
Aug: Rads to hip, then Perjeta, Herceptin & Taxotere
Nov 2013: Perjeta, Herceptin, Halaven
Early 2014: Affinitor, Aromasin, Perjeta, Herceptin.
June 2014: Estradiol, Perjeta, Herceptin
Aug 14: Tamoxofin, H & P
http://kristin-notdying-blog.blogspot.com/
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