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01-30-2010, 07:56 AM
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#21
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Senior Member
Join Date: Jan 2008
Location: Evergreen, Colorado
Posts: 454
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Re: Scanxiety Confirmed, Progression Shown
Dear Sheila,
I am so sorry that you have to regroup. I believe it was Carolyn who pointed out that hearing the news might be the low point in the darned roller coaster ride. (someone let us off!!! We've had enough fun now.)
We both know that you are up for another loop...so.....acknowledge the sadness, take a deep breath, gather your wits for another round.
REMEMBER!!!! there are a lot more options. Try the Avastin as it served you well in the past, if that doesn't work can you go another round with a taxane? Abraxane worked well for me. And of course, our silver bullet TDM-1 which I thought Joe posted something about compassionate use.
We know that you never take NO for an answer. Please keep up the good work. If you need anything from us...let us know....Lots of energy coming your way...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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01-30-2010, 08:59 AM
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#22
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Senior Member
Join Date: Feb 2007
Location: Paris, France
Posts: 858
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Re: Scanxiety Confirmed, Progression Shown
Dear Sheila. I am so sorry that Tykerb did not work very long. I just feel like punching all these insurance guys in the nose. Why such delays? First there was this horrible Tykerb story and now you have to wait for Abraxane. It worked for you before so I hope it will wipe all these bad cells out again. And maybe a combo would be best but others know more than me about possible options.The only thing I can do is send you hugs and tell you I am thinking of you. A lot. Michka
__________________
08.2006 3 cm IDC Stage 2-3, HER2 3+ ER+90% PR 20%
FEC, Taxol+ Herceptin, Mastectomy, Radiation, Herceptin 1 year followed by Tykerb 1 year,Aromasin /Faslodex
12.2010 Mets to liver,Herceptin+Tykerb
03.2011 Liver resection ER+70% PR-
04.2011 Herceptin+Navelbine+750mg Tykerb
06.2011 Liver ned, Met to sternum. Added Zometa 09.2011 Cyberknife for sternum
11.2011 Pet clear. Stop Navelbine, continuing on Hercpetin+Tykerb+Aromasin
02.2012 Mets to lungs, nodes, liver
04.2012 TDM1, Ned in 07.2012
04.2015 Stop TDM1/Kadcyla, still Ned, liver problems
04.2016 Liver mets. Back on Kadcyla
08.2016 Kadcyla stopped working. mets to liver lungs bones
09.2016 Biopsy to liver. no more HER2, still ER+
09.2016 CMF Afinitor/Aromasin/ Xgeva.Met to eye muscle Cyberknife
01.2017 Gemzar/Carboplatin/ Ibrance/Faslodex then Taxotere
02.2017 30 micro mets to brain breathing getting worse and worse
04.2017 Liquid biopsy/CTC indicates HER2 again. Start Herceptin with Halaven
06.2017 all tumors shrunk 60% . more micro mets to brain (1mm mets) no symptoms
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01-30-2010, 09:56 AM
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#23
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Senior Member
Join Date: Apr 2008
Posts: 1,477
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Re: Scanxiety Confirmed, Progression Shown
Sheila,
I sent you a pm and am also thinking about you a lot.
I am sorry that you are having to go through this- stay your very very strong self!
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01-30-2010, 12:28 PM
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#24
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Senior Member
Join Date: Mar 2009
Posts: 508
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Re: Scanxiety Confirmed, Progression Shown
Oh Shiela, I'm so sorry you've had progression and hope that the Avastin does good things for you. Physical symptoms can surely be the pits, but for me, the mental and emotional were just as hard---so I'm praying for good results with Avastin and Herceptin, but also for your state of mind. How I wish that magic words could make it all better! I am thinking about you and keeping you in my prayers.
Barb A.
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01-30-2010, 12:33 PM
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#25
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Senior Member
Join Date: May 2006
Location: Haarlem, the Netherlands
Posts: 835
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Re: Scanxiety Confirmed, Progression Shown
Shit! I'm sorry, but that's the word that comes to mind. This just SUX!
Ofcourse you feel upset, scared, tired, disappointed and all the other emotions going through you right now.
Let's hope Avastin will do it's thing for you. I'm sending good thoughts, healing energy, calming waves and lots, lots of great big hugs your way. Just hang in there!
Love
Jacqueline
__________________
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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01-30-2010, 01:34 PM
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#26
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Senior Member
Join Date: Sep 2007
Location: Near Chicago
Posts: 196
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Re: Scanxiety Confirmed, Progression Shown
Sheila,
Drat. What a letdown. I'm praying too for relief via the Avastin or whatever else becomes obvious. Will be in touch re lunch...
Melanie
__________________
Diagnosed: 7/13/07 (or 7/7/07)
Surgery: 8/15/07 Modified Radical One Side with Lymph Node Dissection
Pathology Report: ER/PR-, HER2+ with FISH at 8.4 copies, Grade 3, Stage IIIa, 3.2 cm tumor plus 4/19 positive lymph nodes
Portacath: 9/7/07
Chemo: 9/14/07 with AC (every three weeks) for four rounds
Physical Therapy for ROM Loss / "Cording" (but not Lymphodema)
Taxol + Herceptin weekly (started 12/2007 with 8 of 12 Taxol)
Radiation: (28 rads from 3/07 to 4/07)
Reconstruction (silicone implant)
Herceptin done (10/08)
Cognitive Remediation (11/08 - 12/08)
Lymphedema Diagnosed 5/10/10 (almost 3 years post cancer diagnosis)
Lymphedema Rehab 9/10/10 - 11/10/10
Six years NED...7/7/2013!
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01-30-2010, 01:37 PM
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#27
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Junior Member
Join Date: Jan 2010
Location: Colorado
Posts: 3
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Re: Scanxiety Confirmed, Progression Shown
Sheila - I'm so upset by this news it's hard to write this, BUT keep fighting and keep your hope bright. My sincere wish for you is that all the wonderful, angelic support you have provided so many here will come back to you NOW and see you through to health again. You are in my thoughts and prayers, please keep us posted. - Luca
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01-30-2010, 04:55 PM
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#28
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: Scanxiety Confirmed, Progression Shown
Sheila, keeping you in my thoughts and hoping your onc find that hat trick 
__________________
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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01-30-2010, 05:28 PM
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#29
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Senior Member
Join Date: Oct 2006
Location: Louisville KY
Naples FL
Posts: 665
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Re: Scanxiety Confirmed, Progression Shown
No!!! After you fought so hard and long to get this
combo. Maybe they will speed up the next treatment
and it will knock it back and since you are aware of HBP
can be prepared for that. YOu are in my prayers and
hopes that all will be well. God bless.
patb
__________________
patb
Diagnosed June, 06, Stage I, Grade3, ER+PR- Her2positive, No Nodes. A/C X 4. Radiation 33 with boost, Herceptin every two weeks until Nov.
07, Arimedex for 5 years. Mugas and Echo and chest xRay. Bone scan of whole Body, and Back of Brain and spine MRI.
CT scan of Lungs every six months
due to two small places. December
2009, bone scan due to bone pain.
Follow up test in 2010.
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01-30-2010, 06:26 PM
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#30
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Senior Member
Join Date: Mar 2008
Posts: 141
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Re: Scanxiety Confirmed, Progression Shown
Sheila-
so sorry for what you're going through. I'll definitely say extra prayers for you. Hang in there I'm sure there are more options.
Sending (((hugs))) and prayers your way.
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01-30-2010, 06:47 PM
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#31
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Senior Member
Join Date: Jul 2006
Posts: 869
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Re: Scanxiety Confirmed, Progression Shown
Sheila, Darn....sending prayers for good options to come your way. Ceesun ( I am on the same combo for now )
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01-30-2010, 08:22 PM
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#32
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Senior Member
Join Date: Feb 2008
Location: South East Wisconsin
Posts: 3,431
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Re: Scanxiety Confirmed, Progression Shown
If you can swing it, seems prudent to keep up the Her2 blockade. I can't remember the access to TDM1 issues. You could add Xeloda in at a lower, continuous, metronomic dose. Same for Cyclophosphamide. Xeloda and Gemzar seem good in pretreated patients. Gemzar and Abraxane too. Weekly seems best. Docetaxel is still there too. If you have an easy spot to needle biopsy, might be a good time to see what's what. You may be ER+ after extended Her2 therapy. That would open up that whole side of things. I've even read high dose antiestrogens can have effect on technically ER negative patients. Ramping gradually up to 20mg Melatonin at night would likely help. Mainline some green or white Tea or get some capsules. Heard only good things about that. Same with Milk thistle.
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01-30-2010, 08:24 PM
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#33
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Senior Member
Join Date: Jul 2007
Location: Northern California
Posts: 764
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Re: Scanxiety Confirmed, Progression Shown
Shelia,
Progression is so hard to deal with. I am so sorry you are going through this but I believe the right combo is out there for you. I thought you were pursuing the TDM1 trial. Is that a possiblity?
__________________
DX 02/01/07
2.5 cm, Er/Pr-, Her2+++
18/20 Nodes
03/07 CT & Bone scan - Clear
AC x 4, Taxol x 4, Added Herceptin
Radiation until 09/07
Herceptin every 3 weeks until 06/08
01/10/08 local recurrence -IBC
01/28/08 CT & Brain MRI - clear
02/08 - Navelbine & Herceptin
05/08 -MRM
05/08 - Gemzar & Herceptin - didn't work
09/08 - Hyperthermia rads
03/09 - Tykerb/Xeloda
05/10 - Tram flap to fix wound
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01-30-2010, 08:35 PM
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#34
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Senior Member
Join Date: Nov 2009
Location: western ma
Posts: 280
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Re: Scanxiety Confirmed, Progression Shown
dear sheila - i can't imagine how you must feel getting this news but i just wanted to say you are in my thoughts. i hope for the best for you. valerie
__________________
8/09 - IDC 1.8 cm triple positive, lumpectomy left breast
10/09 began chemo (taxotere & carboplatin) and weekly herceptin.
1/21/10 finished chemo, continued on herceptin every 3 weeks until 10/2010.
2/10 began 7 wks of radiation
6/10 mom dies of primary peritoneal ovarian cancer
8/10 got my last remaining ovary out
10/10 mammogram all clear
3/11 MRI shows 5 'spots' in right breast, largest 1 cm unidentifiable on US
needle biopsy proved the largest to be old inflamed cyst -phew!
7/10 switched to Arimidex
8/9 switched to Femara - allergic to arimidex
Femara made me lose hair quickly so switched to Aromasin
Aromasin made my hair fall out too and the bone pain was too much.
back on Tamoxifen 1/2013.
blood clot from trains and planes 5/2014 so on coumadin per onco for as long as i am on tamoxifen
tamoxifen was supposed to be up with my 5 yrs in may but my boyfriend was diagnosed with stage 4 colon cancer so i am staying on tamoxifen indefinitely because i want some ammo against BC, given the stress. lost my husband in only 10 wks in 2007 to stage 4 esophageal cancer.
cancer's screwing with another man i love
2/2016 - 6yrs in remission, off tamoxifen and off coumadin - yay!
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01-30-2010, 09:03 PM
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#35
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Senior Member
Join Date: Oct 2006
Location: Southern California
Posts: 900
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Re: Scanxiety Confirmed, Progression Shown
Oh Shelia, I am so sorry that Tykerb/Herceptin did not work for you. Please know that I am thinking about you and hope you can start on your new plan of attack without delay.
Hang in there and please keep us posted.
__________________
Gerri
Dx: 11/23/05, Lumpectomy 12/12/05
Tumor 2.2 cm, Stage II, Grade 3, Sentinel Node biopsy negative
ER+ (30%) /PR+ (50%), HER2+++
AC X 4 dose dense, Taxol X 4 dose dense
Herceptin started with 2nd Taxol, given weekly until chemo done
then given every 3 weeks for one year ending on March 16, 2007
Radiation 30 treatments
Tamoxifen - 2 yrs (pre-menopausal)
May 2008 - Feb 2012 Femara
Aug 2008 - Feb 2012 Zometa every 6 months
March 2012 - Stop Femara, now Evista for bone strengthening
********** Enjoy the little things, for one day you may look back and realize they were the big things. - Robert Brault
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01-31-2010, 05:50 AM
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#36
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Senior Member
Join Date: Sep 2005
Location: MN
Posts: 731
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Re: Scanxiety Confirmed, Progression Shown
I am so angry reading this news. I'd hoped the tykerb herceptin combo would be a good one for you for a long time. You & I were on avastin about the same time I think. The nosebleeds & bp issues at least were manageable. I hope this will shrink those da*&#@ tumors down & gone again. I'm wondering too about the t-dm1 possibility for you now. I'm sending you all kinds of prayers and good thoughts for you right now. Pam
__________________
Pam
6/01 IBC er+ her2+stage IIIb; mastecomy
7/01 AC, taxol; radiation
2/02 tamoxifen
9/02 stage IV bone mets femara
1/03 taxotere/herceptin/aredia
6/03 herceptin, aredia & faslodex
1/04 navelbine, herceptin, aredia
2/05 herceptin/aredia
7/05 xeloda/herceptin/aredia
3/07 xeloda/tykerb/aredia
5/08 taxol/avastin/aredia
2/09 gemzar/herceptin/zometa
7/09 Taxol/Carbo/Herceptin, zometa
10/09 navelbine/herceptin & zometa
2/10 herceptin & tykerb & zometa
4/10 add xeloda &aromasin
10/10 dx with dermatomyiositis triggered by cancer
11/10 restart herceptin, tykerb, zometa
12/10 surgery-place rod in R femur to stabilize bone
1/11 radiation to R femur - 20 tx
2/11 2nd surgery - rod in Left femur
2/11 tx eribulen -- suspended dx brain mets
3/11 brain mets wbr 20 tx
4/11 halaven; discontine 8/11 not working
8/11 radiation to left femur 20 tx'
8-9/11 rad to lower spine
9/11 abraxane/herceptin/zometa
9/12 xeloda/herceptin/zometa
12/12 ablation of liver
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01-31-2010, 11:12 AM
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#37
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Senior Member
Join Date: Sep 2005
Location: Minneapolis, Minnesota
Posts: 127
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Re: Scanxiety Confirmed, Progression Shown
I am praying for you Sheila! You can and will get this under control again. I can't even begin to imagine the roller coaster ride that you have been on. We need you around here woman! You are not going anywhere!!
Much love to you -
kim
__________________
dx 5-05 @42 years old
IDC stage IIA
ER+ (100%) ER+ (75%) HER2+
double mastectomy
4DD AC - 16 weekly Taxol
6 months Herceptin - stopped due to MUGA
35 chest wall rads
Tamoxifen
Lat flap with silicone implant reconstruction on left side due to radiation. "Normal" silicone on right. Finished all reconstruction 6-07!!!
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01-31-2010, 12:18 PM
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#38
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Senior Member
Join Date: Feb 2006
Location: Watkinsville, Georgia
Posts: 356
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Re: Scanxiety Confirmed, Progression Shown
Oh Sheila ~ I am so sorry! You have been such a rock of support for everyone here. I'm praying for you.
Ruth
__________________
[/SIGPIC]~~~~~~~~~~~~~~~~~~~~~~~~~~~
Diagnosed 6/03 nursing daughter
Dose dense A/C 4x
Modified rad mast 8/03
IDC; 3 cm; 10+/16 nodes; ER/PR-; Her2+++
Weekly taxol w/Herceptin (off label) 12x's
40 weeks Herceptin
Radiation 33x
Reconstruction w/ implants 05 & 07
NED
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01-31-2010, 06:51 PM
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#39
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Senior Member
Join Date: Sep 2009
Location: Kensington, CT
Posts: 394
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Re: Scanxiety Confirmed, Progression Shown
Hi Sheila, I am sending positive thoughts and prayers your way for that Hat Trick... You've had good success in the past and it will work again.
As an aside, I just want to thank you for all the posts you do. I feel very grounded thanks to the information that you share on this site. You are one of the folks on this site that have given me great strength to deal with this.
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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01-31-2010, 08:28 PM
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#40
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Senior Member
Join Date: Jan 2010
Posts: 170
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Re: Scanxiety Confirmed, Progression Shown
Hi Sheila,
I have taken so much comfort in seeing your beautiful, smiling face each time I checked in. Don't despair. Take a breath and let us all send you love and luck.
Hang in there and know that no matter what, we are standing beside you in your fight.
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