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02-02-2011, 12:28 PM
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#1
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Full of Beans - how are you these days??
Hello K -
Am thinking about you and notice a lack of contact from you.
I sure hope you have some control on your recurrence by now.
You are a fighter and a very good researcher, so I know you are taking the time and energy to meet up once again with our friend NED.
Big hugs coming your way.
__________________
"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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02-02-2011, 02:08 PM
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#2
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: Full of Beans - how are you these days??
Hi
I sent full of beans a couple of pm's before xmas but had not had a reply.
Hoping to hear soon with some good news.
Ellie
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02-02-2011, 02:20 PM
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#3
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Re: Full of Beans - how are you these days??
Full of Beans hope to hear from you.
Amelia
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02-02-2011, 08:42 PM
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#4
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: Full of Beans - how are you these days??
Please let us know how you are doing. We miss you.
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02-03-2011, 02:55 PM
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#5
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: Full of Beans - how are you these days??
I miss your posts too fullofbeans and hope we hear from you soon 
__________________
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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02-03-2011, 03:19 PM
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#6
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Senior Member
Join Date: Jan 2008
Location: Evergreen, Colorado
Posts: 454
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Re: Full of Beans - how are you these days??
Full of Beans,
We sure hope to hear from you soon.
I realize how frustrated you were lately with the inability to gain access to some of the options presented on the board.
But we sure miss you and would love for you to let us know how you are doing.
Lori
__________________
2007
Oct - Diagnosed - Stage IV 5 c.m. IDC - Left Side er/pr- Her2+++ Node + 2/14 - Single Liver Met Double Mastectomy Nov - Begin T+H 2008
Feb-Complete 6 cycles- T&H- NED
March - Continue - Herceptin Only
April - Rads for 6 weeks
2009
Continue Herceptin - Continue NED
April - Recurrance- 3 cm. Liver Met
May - Cryosurgery
June - November - Abraxane + Herceptin
Aug - PET/CT - CTC = 0 Back to NED
2010
January - Continue NED
July - Recurrance - 3 cm Liver Met CTC=1
August - Cryosurgery #2
August - November Navelbine
November - Back to NED - End Navelbine
2011
Feb - Recur - 4 cm Liver Met - Same Left Lobe
March Surgery it is -Couldn't get a clean margin
July - Confirmed continued liver involvement
August - Begin Herceptin + Tykerb
October - Mixed results from H+T
Add Abraxane + H + T - Nov - April
2012
January PET Scan - It's working!!
April - Back to NED
July - Recurrance
August - Begin TDM-1 Trial (Taxol + TDM-1)
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02-03-2011, 04:50 PM
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#7
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Re: Full of Beans - how are you these days??
Hi Full of Beans,
You know how we worry about our Her2 sisters. When you have time and feel up to it pls give us a quick update. Looking forward to hearing from you.
I just checked and she recently logged in on 1-27-11. She must not of felt up to posting yet. We miss not hearing from you. Hope your doing ok...we all miss you. Hugs!
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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02-10-2011, 07:07 PM
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#8
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Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
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Re: Full of Beans - how are you these days??
Ditto, Full of Beans...hope all is OK XO Suzan W
__________________
 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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02-15-2011, 05:41 PM
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#9
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: Full of Beans - how are you these days??
Bumping this up - maybe you will check in one of these days.
__________________
"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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02-17-2011, 01:50 PM
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#10
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Senior Member
Join Date: Jan 2007
Location: UK
Posts: 617
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Re: Full of Beans - how are you these days??
Dear all,
Thank you so much for thinking of me. I apologise for not writing and indeed I am frustrated at the system we have and did not wish to post for a while.
I am still not NED, long treatment story, but well I have progressed and have 7/8 mets in the lungs (largest 7mm) (and still a mass in the mammary gland. Dx this January. But I have not lost hope just yet, it s ain't over till it's over..
I would appreciate any suggestions..
__________________
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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02-17-2011, 02:02 PM
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#11
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Re: Full of Beans - how are you these days??
Full of Beans,
I am so glad to hear from you. I don't have any suggestions.
Like you, I have mets to the lungs. They were discovered in August 2010. I have been taking Xeloda and Tykerb. They have shrank some, but they are still not gone. Everyone at the oncologists office says my cancer is stable, but I want to be NED again.
Have been thinking about going back to the UW to do the T-cell vaccine trial. Like you, I participated in the peptide vaccine trial. I still have not heard if I had an immune response. Did they ever tell you if you had an immune response?
What kinds of treatments have you been getting?
Sorry to ask so many questions, I am just so glad to hear from you. The last time I talked with Stephanie a few months ago, I asked her if she had heard from you.
Amelia
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02-18-2011, 08:36 AM
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#12
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Senior Member
Join Date: Jan 2007
Location: UK
Posts: 617
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Re: Full of Beans - how are you these days??
Thank you all again, I have just read more post and realised how courageous you all are and that I mostly need to get my faith back and continue fighting, I having been a bit low for a while and I feel like I have been rolling with the punches a bit too long.. time to stand up again..
School teacher I know what you mean with "the stable" thing, for me either it is not good enough..I am also targetting NED and indeed thanks Steph for your encouragement about my research.
Also School T yes I was told by UW but only because (perhaps) they had given me a wrong dosage (lower) which saddened me a lot at the time but they still showed that I had a response tho this.
best to all
__________________
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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02-18-2011, 09:22 AM
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#13
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Senior Member
Join Date: Sep 2006
Posts: 57
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Re: Full of Beans - how are you these days??
Hi FOB,
Just wanted to wish all the best to my Seattle buddy. We are hanging in there despite the odds. I think of you often and get worried when you go underground. Keep us in the loop so we can help support you! I'll send a few extra prayers your way.
__________________
Missy W.
Diagnosed 1/06; Her-2, er/pr+
lumpectomy
4 Rounds A/C
tiny area of interest in liver - watching
12 rounds of Taxol w/ Herceptin
tiny area cleared - Stage IV (because area responded to chemo)
Herceptin weekly
27 rounds radiation
NED 8/06
10/06 oopherectomy
Arimidex
1/07-7/07 Vaccine Trial - UW Seattle
3/09 liver met back
3/09 Navelbine, Herceptin Aromasin
6/09 Liver Resection
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02-18-2011, 10:19 AM
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#14
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: Full of Beans - how are you these days??
Thanks for responding to our request for information.
Hang in there !! Remember the quote you posted by the Dali Lama and continue to take good care of yourself.
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02-18-2011, 02:27 PM
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#15
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Senior Member
Join Date: Sep 2009
Location: Kensington, CT
Posts: 394
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Re: Full of Beans - how are you these days??
FullofBeans,
I am rooting that you will get to NED.
Sending hugs and prayers your way,
Kris......
__________________
06/08/09 - 55, IDC, IIIA, ER+/PR-/HER+++
Nottingham 6/9 - Grade 2 5.2cm, several nodes
06/23/09 - Neoadjuvant - TCH Herceptin til June
10/07/09 - Finished Chemo
10/27/09 - Mastectomy RB
Path Report: RB No residual tumor pCR,
2 of 15 pos - .5mm largest micromets
12/18/09 - Radiation started (28)
02/05/10 - Finished Radiation
01/11/10 - Started Femara
06/22/10 - Finished Herceptin.. My son's 22nd BD. Hope it's a sign! Hoping for the best.
11/15/10 - Started Walter Reed BC Vaccine trial at
1/04/11 - Sibley Mem. Had to withdraw due to met
01/23/11 - Stage IV - Brain Met 1.6cm 1.7cm
02/03/11 - Gamma Knife (2 fracts to minmize necrosis)
03/01/11 - Gamma Knife
6/11 - Necrosis
7/11 - Necrosis stopped & Tumor progression
8/11 = Now think it's really necrosis
9/11 - Avastin every two weeks -- It's working!! Necrosis is shrinking.
12/11 - Necrosis gone AVASTIN worked.
12/11 - Bone &CT found
Oct '10 - Ran Hartford 1/2 Marathon to Thank Dr. Slamon for Herceptin!
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02-26-2011, 10:41 AM
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#16
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Senior Member
Join Date: Sep 2005
Location: Alaska
Posts: 2,018
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invisible qualities
Hi FOB,
Your history is rather uncommon, in part probably due to your persistence in seeking out and independently evaluating the various options available to those who question the standard answers. But given your long period of NED at such a young age, I also think it is likely that you have some as-yet unidentified characteristic that might be working strongly in your favor despite the recurrence.
Stay active, and do all the healthy things you can to influence the situation. You're good at it.
A.A.
__________________
Dx 2002 age 51
bc for granny, aunt, cousin, sister, mother.
ER+/PR+/HER2+++, grade 3
IDC 1.9 cm, some DCIS, Stage 1, Grade 3
Lumpectomy, CAFx6 (no blood boosters), IMRT rads, 1 3/4 yr tamoxifen
Rads necrosis
BRCA 1 & 2 negative
Trials: Early detection OVCA; 2004 low-dose testosterone for bc survivors
Diet: Primarily vegetarian organic; metformin (no diabetes), vitamin D3
Exercise: 7 days a week, 1 hr/day
No trastuzumab, no taxane, no AI
NED
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03-11-2011, 09:07 AM
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#17
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Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
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Re: Full of Beans - how are you these days??
Yay Full of Beans...it is good to "hear" from you!! No suggestions, can send hugs and good wishes to you instead!! Keep on truckin'!!! xox Suzan
__________________
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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