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Old 03-09-2013, 03:13 AM   #1
Amanda
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Help its back! after 10 years

Hi not been on here for a while. It looks like I have bone mets. Having a CT scan on tuesday but from what the doctor said on the phone it looks highly likely after the bone scan I had. After 10 years! Pain in my rib , I really don't know how I can face this I have 3 kids nearly grown up. Why now? I guess it will be herceptin and chemo. How do you cope? xxx 2nd time around
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Old 03-09-2013, 04:35 AM   #2
Ellie F
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Re: Help its back! after 10 years

Hi Amanda
As another Brit you wanted to say how sorry I am to hear this news. I wondered if you were originally ER+. The reason I ask is that I have met many ladies at my centre who have recurred years after original diagnosis with bone mets, if fact one lady had just had a hip replacement due to mets that came back 15 years after initial treatment.
Please let us know how it goes and what plan your oncologist thinks will be most effective. You are not alone.
Hugs
Ellie
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Old 03-09-2013, 05:07 AM   #3
jaykay
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Re: Help its back! after 10 years

I'm so sorry. I recurred after 12.5 years just 6 months ago. I know everyone is different but it was a major shock to me. Same pathology as first but in other breast and more aggressive.

You will cope and be wiser the second time around. Like me, you will probably drive the doctors and nurses crazy ;-). So many more tools in the arsenal these days.

I hate this horrible disease! But we are better than it

Best

Janis
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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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Old 03-09-2013, 02:24 PM   #4
Amanda
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Re: Help its back! after 10 years

Thank you Ladies! you are so kind and inspirational. I will keep you posted and let you know how I get on. Yes my BC was Her 2 . So hopefully I will get hercepton. Are you both on it? Take care love Amanda xx
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Old 03-09-2013, 03:28 PM   #5
jaykay
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Re: Help its back! after 10 years

Yes, I started herceptin whe I started chemo in November . Will continue on herceptin for a total of one year, every 3 weeks.

I did not have herceptin or chemo first time around even tho I was her2 positive. They were not recommending it for early stage back in 2000.

You take care and keep us informed

Janis
__________________
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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Old 04-06-2013, 03:07 AM   #6
chrislmelb
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Re: Help its back! after 10 years

So i see that you are ER+ as well as HER-2 + like i am . I recurred last year after 9 years. Tried Hormones and Herceptin first but it was unsuccessful so went onto Abraxane.
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DX Sept 03 age 40 Stage 2B Grade 3 mastectomy (after 2 prior breast conserving surgeries)
"at least" 2.3 cm 3/12 nodes ER+/PR+ Her2+++
8 FEC. Tamoxifen then Arimidex. Ovaries out.
"late" Herceptin for 2 years (18months after chemo) on HERA trial. finished Herceptin Nov 2007.
Multiple bone mets May 2012 and now liver August 2012.
Abraxne, Herceptin and Zometa.
June 2013 Tykerb, Xeloda and Xgeva
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Old 04-06-2013, 12:08 PM   #7
StephN
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Re: Help its back! after 10 years

Hello Amanda -

Not a nice way to start spring - to learn your cancer is back!

Herceptin was in trials in 1999 through 2004, so unless you got it in a trial, you were given only chemo in those years. (If you even were tested for HER2 ...)

There are now various ways to treat bone mets, from new drugs to radiation. Look at any and all possibilities before you settle on a treatment.

Once we get a cancer diagnosis and go through all the months and months of surgeries and drugs, that feeling of vulnerability never quite leaves most of us. Through this time most of us develop another level of internal fortitude against the time we may get bad news again.

Draw on your ability for resilience and make sure you have some time for YOU to relax and let the treatments work. (I know, hard to follow that last advice in these busy times, but priorities change!)

All the very best.
__________________
"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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Old 04-07-2013, 04:56 PM   #8
ElaineM
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Wink Re: Help its back! after 10 years

I know the news is not happy news, but I know you will find a way to continue putting one foot in front of the other. Take good care of yourself.
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Peace,
ElaineM
12 years and counting
http://her2support.org/vbulletin/showthread.php?t=48247
Lucky 13 !! I hope so !!!!!!
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Old 04-08-2013, 08:05 AM   #9
Mtngrl
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Re: Help its back! after 10 years

Dear Amanda,

Mets are never good news, but most people do well for a long time with bone mets. There are many treatment options.

I actually had a bone met that healed. My onc says in her experience when an area heals, the cancer doesn't come back.

Even if it doesn't heal, it's possible to keep it stable for a long time.

As others have said, you have a well of resilience and resolve from the first time around. You'll be able to draw on it.

And we are here to help.
__________________
Amy
_____________________________
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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Old 04-21-2013, 01:46 AM   #10
Amanda
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Smile Re: Help its back! after 10 years

Hi Ladies!

Sorry I have not been on here for a while lots of hospital visits and more scans.
I have just found out that it is a broken rib and nothing ELSE! I am one of the lucky ones and very thankful. Thank you for all your help and support and I wish you all well . love Amanda xxx
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Old 04-21-2013, 05:20 AM   #11
vballmom
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Re: Help its back! after 10 years

Fantastic! (Where else would a broken rib be great news?)
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Old 04-21-2013, 05:51 AM   #12
Paula O
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Re: Help its back! after 10 years

Hooray that it's just a broken rib! Wonderful news!!!!!!

Hope you keep that NED status for good.

Paula
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Old 04-21-2013, 01:33 PM   #13
Becky
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Re: Help its back! after 10 years

Its weird to say "oh great, its a broken rib" but only us cancer folks can say that so, I'm so happy its a broken rib. You will be good as new soon. I am so happy for this outcome. Thinking healing thoughts for you.
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Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 14 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 04-22-2013, 06:10 AM   #14
Amanda
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Re: Help its back! after 10 years

Thank you Ladies !! I really appreciate your kind words. I have never been so pleased at having a broken rib! I having another CT scan in 3 months. They are going to check my bone density as it might have declined since the last one. I have osteopenia and take a weekly med and calcium.
We have just booked to take the kids away at Christmas to Florida! It makes you realise how I have taken people and life for granted. Love to you all xxx and thanks !
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Old 04-25-2013, 07:24 AM   #15
Jean
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Re: Help its back! after 10 years

Amanda,
When I read your first post I was so sad. Then when I got to the post of the broken rib I had to chuckle, as everyone else posted "a broken rib" now that's good news....lol...ENJOY FLORIDA (one of my favorite states)

Hugs,
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 04-25-2013, 09:10 AM   #16
karen z
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Re: Help its back! after 10 years

A broken rib..........what good news (and I know how strange that would sound to others).
Christmas will be a good time to go to FLA (nice weather, great beaches.......enjoy, enjoy, enjoy).
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Old 04-25-2013, 09:47 AM   #17
'lizbeth
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Re: Help its back! after 10 years

Oh wow! Look what I missed. Crazy good news!

Eat lots of green veggies and citrus in Florida to speed the healing.

Ummmm . . . be careful on vacation, no parasailing, running with the bulls or contact football for you!
__________________
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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