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01-12-2012, 08:10 AM
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#1
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Senior Member
Join Date: Jan 2007
Location: UK
Posts: 617
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News
Hi all,
Wishing you all a lucky New Year!
In a turn of situation it appears that my tumours where not growing as fast as initially thought (wrong measuring in the october scan of the tumours..crazy!) and was able to convinced them that I should have surgery (initially declined).
The right lung was operated on in mid december:
Yes surgeons are pessimist gore and I was told upon waking up that they nearly closed me up when they went in as It had spread to the chest wall and that one of my rib was at breaking up point. I was also told that they pelled off a tumour attached to the 1st to the 3rd rib.. and that they did not think they would bother do the left side of my lung.
However as it turned out the histology report was rather positive and said that the chest wall had not been invaded and that all the margins were clear!
I was called a few days ago to say that if the left side lung tumours are behaving they would be the left side too.
this would mean that cancer would be gone from my vital organs and therefore give me much more extra time for the miracle HER2+ breakthough drug to come through for us all..
Truth I am tired, exhausted in fact, I feel battered and I think I am also quite depressed since the treatments and feeling sh*t as been my lot in the last 2 years. My puppy is doing a good job to get me out of the house every day for a lovely walk which keeps me afloat along with her lovely company. I have become rather sensitive and afraid of pain after being poked inside so many times. Lung surgery was particularly painful I found. I hope that I (and many of us) can have a break from painful and toxic treatment in the near future. I know I should be more grateful at the turn of situation the thing is I have become cynical and I am aware that we have not checked other areas such as my brain (2yrs my last scan)..truth I do not even want to ask for a scans, I know I should be hopeful but instead I have become quite detached to the outcome.
All love
__________________
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
Last edited by fullofbeans; 01-12-2012 at 02:20 PM..
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01-12-2012, 10:51 AM
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#2
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: News
What a cute, cute puppy !! Your puppy looks so sweet.
With a new year just beginning there is hope for approval for new and better treatments and new developments in the field of cancer.
You did have some good news and that is fantastic.
Spring flowers will be blooming in a few months.
I bet you would love to take a walk and enjoy the beautiful spring flowers with your puppy. Hang in there and keep putting one foot in front of the other, so you will be able to do that.
I have my fingers crossed that you will be able to do that. Blessings of peace, and good health to you in 2012.
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01-12-2012, 12:06 PM
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#3
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Re: News
Sounds like you have reason to be optimistic - try to hang on to that, and hope that the next round of Her2+ treatments will be the magic bullet for you.
all the best
caya
__________________
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
15 Years NED!!
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01-12-2012, 09:45 PM
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#4
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Senior Member
Join Date: Sep 2005
Location: Alaska
Posts: 2,018
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Re: News
SO glad to see you post, FOB!
Aging isn't always popular, but with every year you age I like to think you have a little more protection from hormonal influences as time goes by.
Your "owner" has quite a lot of personality in the photo. We acquired our "owner" in California this last fall, who walks us daily too. It is a great life and we are thankful for his thoughtfulness in taking us on. His majesty was temporarily residing at a shelter at the time, but he assured us that his captivity there "was all just a clerical error".
Looking forward to your next post,
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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01-12-2012, 10:06 PM
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#5
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Senior Member
Join Date: Dec 2011
Posts: 585
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Re: News
Im so happy that you have received optimistic news after your surgery, and how lucky it is they didn't just "sew you up". I can certainly see how that sweet puppy has captured your heart, and so glad you are able to have some encouragement and love there in that little package. Stay strong, keep the faith. Big hugs and prayers to you.
__________________
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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01-12-2012, 10:08 PM
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#6
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Re: News
FOB -
Good to see your post. For the most part your news is very encouraging and I agree, there is much reason to be optimistic. Nevertheless, you have been though an incredible ordeal, both physically and emotionally. This has no doubt sapped your energy and spirit. Keep focused on your healing, be gentle with yourself. You are an inspiration to many, including myself.
Take care
Chris
__________________
Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial
5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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01-13-2012, 08:15 AM
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#7
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Senior Member
Join Date: Jan 2007
Location: UK
Posts: 617
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Re: News
Thanks all for your supportive message. I have a tendency to go into hiding when things are just getting too much.. I just get overwhelmed basically and stop answering phone..messages ect.. I know it is not right but with low energy on top of it all it is a very easy vicious circle.
Truth only here do i find people in similar positions. All around me people are having fantastic news: my two best friends got married recently and one is pregnant, another has just got a dream job abroad and is in love .. I am happy for them, not jealous but just how do you RELATE to people???? ..seems I am only busy surviving and loosing bits of me here and there and new scars and.. yes my puppy is doing a good job since only a dog really can share my life as I feel like I am a non ending burden..is surviving a purposeful life?.. I feel like I am at a cross road where part of me refuses to give up and another is so tired of it all and just want peace and the hurt to stop..we would not put a dog through that.. Sorry I know I know..
__________________
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
Last edited by fullofbeans; 01-13-2012 at 08:19 AM..
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01-13-2012, 01:01 PM
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#8
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Senior Member
Join Date: Sep 2005
Location: Alaska
Posts: 2,018
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Day by day
FOB,
Hiding does offer healing when it comes to pain, and who sits in judgment on how much is enough?
I did not begin to know you when I met you, and I apologize for that, but over time I have learned more about how unique and precious you are, sick or well.
No one knows what anyone else's endurance might be, and I can only say how much I appreciate you.
More than ever,
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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01-16-2012, 09:08 AM
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#9
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Senior Member
Join Date: Jan 2007
Location: UK
Posts: 617
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Re: News
A.A,
A very kind post,
Thank you much love send your way too. Glad you also have a dog too now.
__________________
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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01-17-2012, 07:39 AM
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#10
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Re: News
Glad to hear from you, FOB. You are an amazing woman also.
Amelia
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01-17-2012, 10:53 AM
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#11
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: News
Hi FOB
Just got home from 2 stints in hospital myself and read your post. Wanted to say how amazing you are for finding the spirit and energy to push ahead with very difficult treatments. I am so happy that they got it out, in fact have tears streaming down my face!
Please let us know how you go.
Hugs to you and your beautiful puppy
Ellie
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