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Old 09-08-2009, 12:01 PM   #1
tricia keegan
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First mets scare since '05:(

I've been fortunate in not having any major stresses since my dx..up to this week that is!
I suddenly developed constant lower back pain last Friday evening without an apparent cause or injury that I can recall. The pain has'nt let up since, usually I wait the obligitory two weeks but as I was due at the hospital today for a clinical trial appt I mentioned it to the Dr.
I also told a little white lie and said I'd had it for a week as I knew he'd dismiss it otherwise and I'm really worried about this. My blood work today was fine, I had an x ray of my lower back which will be followed by a bone scan when they arrange a date. I know everyone's different but had always thought any mets would start off with little pain and then build up? This one began strong and is there all the time although I am getting a little relief today from Nurofen although it has'nt gone completly.
Anyway, I just wanted to share my worries and hope you all don't mind, a problem shared is a problem halved as they say
Please keep finger's and toe's crossed for me!!!
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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 09-08-2009, 12:11 PM   #2
Leslie304
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Re: First mets scare since '05:(

Toes, fingers and eyes all crossed for you Tricia! I hope it's nothing! (or non cancerous easy explanation!) Share your worries anytime ...
__________________
2009
3-15 Age 48 -found lump
Dx 4/15/09: IBC Stage III w/extensive lymph node involvement HER2+++
5/1/09: Adria/Cytoxan for x 3-no response
6/12/09: Taxol/Herceptin for 1 tx -no response
6/24/09: added Carboplatin to T/H x 3 - no response
7/09 -added F5U -no response
7/29/09: Herceptin/Xeloda/Tykerb no response
8-18-09: 2nd opinion at MDA - IDC not IBC! First Onc disagrees,
BRCA 1/2 Neg
8-19-09: continue on Herceptin/Xeloda/Tykerb-slight response
9-24-09 MRM right breast 10x10 cm tumor! (Huge!) no necrosis - Got clear margins! A miracle!
13 of 18 nodes positive
11-2-09 -12/10 started radiation
12-10-2009 - Finished with radiation!!
2010
1/13/2010-Back on Xeloda x six cycles (have been on Tykerb/Herceptin all along)
4/4/14 - stopped Xeloda/Tykerb one cycle early. Liver enzymes high!
4/20/2010 Clear PET Scan!! NED
6/10/2010 - Finished Herceptin11/8 - Brain METS! CRAP! WBRT only option given. Four mets, separate locations in brain, no SRS
12/10 - Herceptin/Tykerb/Xeloda
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Old 09-08-2009, 12:16 PM   #3
norwegian
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Re: First mets scare since '05:(

Tricia,- I will cross my fingers and toes for your bone scan. It really might be nothing!
I had a seriously (at least that is what I think) back pain one year ago. I couldn't stand upright, couldn't relax properly, was really tired all the time.
I had a bone scan, and prayed to God.
It was clear - and the pain went.What I think happened is that my muscles got more and more tightened (I don't know how to put it, but you understand I'm sure) and was aching more and more.
This is a part of the cancer life I guess.
Good luck anyway!!!
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Diagnosed Dec 06, tumor 1.3cm. 1/10 node. PR/ER-, Her2+, DCIS, Mascetomy right side. FEC100 x4, Taxol x4, 25 Radiations, Herceptin finished in June 08. Lymphedema right arm
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Old 09-08-2009, 12:29 PM   #4
StephN
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Re: First mets scare since '05:(

Hi Tricia -
Do you know a good massage therapist? Amazing what they can do for our aches and pains.

I think maybe an MRI would be better than a bone scan to rule out any problems with spinal discs. Problems with bulging discs can cause sudden and sharp pains.

Try these avenues before thinking "mets."
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"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 09-08-2009, 01:01 PM   #5
Lien
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Re: First mets scare since '05:(

Been there - several times. Never turned out to be anything to worry about. And you know what? Once it had been established that the pain was relatively harmless, it went away.

Stress can contribute to backpain as well. I'm glad you are having it checked, because it's no good waiting for two weeks while worrying.

Fingers and toes crossed for a good outcome, and may the pain disappear without a trace.

Love

Jacqueline
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Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
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Old 09-08-2009, 01:37 PM   #6
lexigirl
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Re: First mets scare since '05:(

Hi Tricia,

I too am hoping since the pain came on so quickly that the problem is non cancer related. I hope that the pain goes away and that your scan will relieve your fears .

Big Hugs,
Lexi
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Old 09-08-2009, 01:58 PM   #7
Hopeful
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Re: First mets scare since '05:(

Tricia,

I see you are on an AI. Do you know if you are osteopenic or osteoperotic? I am wondering about some kind of small stress fracture.

Best of luck to you,

Hopeful
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Old 09-08-2009, 02:52 PM   #8
caya
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Re: First mets scare since '05:(

Tricia,

Glad you are having it checked out, and I am praying that it is nothing. StephN is right - why don't you get a nice massage from a registered massage therapist.

Keep us posted.

all the best
caya
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ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08

Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
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Old 09-08-2009, 03:01 PM   #9
tricia keegan
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Re: First mets scare since '05:(

You're all very kind and thank you too for all the good thoughts and suggestions. Steph, I'm guilty of self dx here and just thought bone mets and not much else lol...your suggestion is a good one and can only help so I'll definatly look into that. I'm due to fly to Scotland to visit my first Grandchild on the 19th so maybe a massage will help relax and calm the fears a little
Hopeful, this crossed my mind earlier too, but although my first dexa in '07 showed some slight bone loss, the one I had the following year showed great improvement so I was able to give up the Fosamax which I hate!
Leslie, your suggestion of crossing eye's as well as everything else made me smile, thank you and you have a beautiful dog.
To everyone else, thanks again for replying and sending good wishes, it really helps allay the fear and confirms none of us are alone while going through this.
Oh, for the days when a back ache was simply just that lol...I'll try to see the bottle as half full thanks to all your encouragement and just hope this is nothing more than a scare, but it's really reminded me of what a cancer dx means no matter how well we're doing or far out we are...
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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 09-08-2009, 04:02 PM   #10
fullofbeans
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Re: First mets scare since '05:(

I am also hoping that it is nothing else but a scare, I have had many too and I can so relate to your worries..our worries here on this site, you are amongst people that understand what you feel.

so yes keep fingers crossed for you that it is just one of these usual annoying back problems, set a date for the scan then you know something is being done for it then try to relax until then (i know not easy)

Best wishes
__________________

35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies

Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..

superior vena cava blocked: stent but face remains puffy

April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.

Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.



'Under no circumstances should you lose hope..' Dalai Lama
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Old 09-08-2009, 05:03 PM   #11
Laurel
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Re: First mets scare since '05:(

Believing for the best, Tricia! It takes nothing to send a back into spasm. Honestly, nothing! Clean the tub and stretch too far, twist to reach a bit of soap scum and your back can scream for days! Darn this getting old stuff! Of course, it beats the alternative! Try not to worry too much, Tricia. Easy for me to say, of course, but I am confident you will improve with a hot bath, a hot toddy (sp?) and a little time. Please let us know your scan results.
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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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Old 09-08-2009, 05:58 PM   #12
Mary Jo
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Re: First mets scare since '05:(

Hi Sweet Lady....I'm so sorry for this scare in your life. It is so awful when these scares come.

I am praying that all will be well with you......and I'm feeling good that it is. I guess because it all came on so quickly......

I anxiously wait to hear from you.......

Love and hugs,

Mary Jo
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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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Old 09-08-2009, 06:28 PM   #13
mamacze
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Re: First mets scare since '05:(

Oh Tricia - we can ALL relate to the panic in the pit of your stomach feeling when something just doesn't feel right and "what if?".....it is a slice of ever constant worry that lurks within all of us, to one degree or another. Thank you for just putting your fear on the boards out there for all of us to feel and share with you - a bit of sun shining on our dark thoughts is a wonderful antidote. God speed to you during your testing and during your visit with your gran - please stay with us and tell us what your bone scan results are.
Love Kim from CT
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2001 - Stage 0, lumpectomy, radiation, tamoxifen

2004 - Stage 4, mets to 4 lobes of lungs and liver, lumpectomy, er/pr -, her2 neu+++, Herceptin and Navelbine then Herceptin only.

2005 - Breast Ca vaccinations with the Tumor Vaccine Group in Seattle

2011 - Still Herceptin only and NED


2011, June - STOPPED Herceptin and kicked up my heels!

2012, February - 1 small tumor came back to haunt me in my lungs - back on Herceptin only, tumor stable.


2015, November - tumor on lungs removed (Segmentectomy), back on Herceptin only
Received U of W vaccine clinical "booster" Vaccine


2022 On Herceptin and NED continues - WOOT WOOT!
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Old 09-08-2009, 06:38 PM   #14
DonnaD
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Re: First mets scare since '05:(

Gone are the days of riding out a pain. Yep, I'll have everything crossed too with prayers coming your way.

Hoping the scan will be soon and your waiting will be short.
Donna
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Crystal Lake, IL
Diagnosed 8/4/06 at age 54
Lumpectomy 8/30/06
Stage llA, grade 3, ER/PR-, Her2++
1.7 cm tumor, 1+ lymph node out of 9
Completed 4 A/C, & 4 Taxol with Herceptin
36 rads completed 5/16/07
Mammograms, 7/07 clear
fractured ribs in radiated area 10/07
Finished Herceptin 12/27/07
Mammogram,CT,tumor markers 1/08 - small lung nodules in radiated area, repeated tests 3/08 stable
Mammogram,CT ,tumor markers 6/08 stable
NED 2 years!!
3 years !!!
4years!!!!
4 years, 10 months and 8 day NED, calling it 5 years!!!
Official 5 years 8/30/2011
8/31/ 2012 - 6 years!!!!!!
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Old 09-08-2009, 07:05 PM   #15
Becky
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Re: First mets scare since '05:(

I am thinking about you Tricia. Sometimes we do the slightest thing and your back can just go. You moved 1 mm too much in a certain way. You don't even notice what you did but your back (or neck) sure does.

I think bone mets are something that comes on as an ache and gets progressively worse for the most part. I think you moved funny and didn't even know it.

None the less, every pain brings to mind that it could be more than just a headache, stomachache - whatever. You will see that all will be well - except your aching back that you knocked out of whack without even knowing what you did!
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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 18 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 09-09-2009, 04:39 AM   #16
DanaRT
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Re: First mets scare since '05:(

Tricia, Thinking of you and praying it is nothing to worry about- normal aches and pains. Enjoy your time in Scotland with your grandchild.

Love,
Dana
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]
Diagnosed - Nov. 2, 2007 at 45
Lumpectomy - Nov. 13, 2007
Tumor 1.2 cm
Stage 1 Grade 3
ER/PR - Her2 +++ (3.8)
Taxotere/Carboplatin/Herceptin- 6 rounds
Neulasta
Radiation 33 treatments - will be done 6/6/08
Herceptin through 12/08
12/07 MUGA 61%, 4/08 MUGA 60%, 7/08 MUGA 64%
three wonderful daughters, a terrific husband,
Life is Good
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Old 09-09-2009, 06:12 AM   #17
Joan M
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Re: First mets scare since '05:(

Tricia,

Many here relate to thinking the worst about aches and pains. We try not to worry, but the challenge is constant.

Checking it out is the best thing to do for peace of mind.

Joan
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Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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Old 09-09-2009, 08:09 AM   #18
tricia keegan
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Re: First mets scare since '05:(

Thank you once again everyone, I'm feeling a lot calmer and more positive today thanks to all your encouragement. I think having spent a long commute and stressful appt yesterday I was just worn out and allowed myself a panic moment (or two )!
I spoke to my onc this morning and although they will arrange the bone scan she's quite hopeful we're not dealing with mets although obviously can't say for sure.
Having managed to check my bloodwork again and speak to the radiographer about the x ray, she feels we're dealing with a sciatica type of pain here Trying not to get my hopes up too high but the pain is responding to the meds today and of course given the choice I'll gladly take sciatica over the alternative anyday!!!
I'll keep you all posted when I get the scan done but thank you for helping so much ((((hugs))))
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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 09-09-2009, 10:06 AM   #19
Sheila
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Re: First mets scare since '05:(

Tricia
Only we would think that sciatica is great news...thinking of you and hoping for a good report from the bone scan....sending you some extra Irish Luck and lots of love and prayers!
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is fighting some kind of battle."



Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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Old 09-09-2009, 10:10 AM   #20
alicem
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Re: First mets scare since '05:(

I agree with Sheila . . . HURRAY for sicatica!! That is a better alternative. Hoping you get good news about your pain.
__________________
9/15/08 (age 52) - Mammo: calcifications
9/22/08 - Biopsy: DCIS, grade 3. ER,PR status: Pos. in 75-90% of tumor cells.
10/01/08 - Ob/Gyn appt.: found complex, mostly cystic mass on right ovary - 11cmx12cmx 8cm
10/15/08 - Hysterectomy & Oophorectomy, Lumpectomy: Cyst on uterus, not ovary - all was benign. Breast - 5 of 6 bad margins. 2 Sentinel Lymph nodes removed, both negative. Stage 0, Tis, N0
12/11/08 - Mastectomy & DIEP reconstruction: Surprise! 2 cm Invasive DC, grade 2 found. One benign internal mammary lymph node. Stage 1, T1c, N0, all clean margins. ER+ (Proportion Score = 2/5, Intensity Score = 2/3) and PR+(Proportion Score = 3/5, Intensity Score = 2/3)
HER2 score = 3+
1/09/09 - Oncotype DX: Recurrence S/core of 60 !?!?! ER status is NEG!! PR staus is NEG! HER2 score = 12.2 (still positive, greater than 11.5 is positive).
1/20/09 - Started chemo: TCH
5/26/09 - FINISHED CHEMO!
1/05/10 - FINISHED HERCEPTIN!
1/22/10 - Port-a-catheter removed!
3/07/18 - Still NED
9/10/23 - Still NED
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