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01-28-2009, 03:38 AM
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#1
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Senior Member
Join Date: Oct 2007
Location: Australia
Posts: 309
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Is this "remission"??
There seems to be some difference between how terminogy is used in the US and Australia ~ like i dont think people use "NED" a lot here - more often people will say they are "in remission" - I could be wrong here... I have some confusion about the terms myself...!?
The only reason I'm asking is I asked my GP today about my tumour markers It is 29 and apparently it has to be less than 45 to be considered normal - so my tumour markers would be considered normal - which is pretty wonderful eh?
But then he went on to say 'you are in remission'?? This seemed strange to me because on my catscan it still shows some mets there - even though reduced in size and some that have actually disappeared altogether! - but that doesnt equal remission does it?? It obviously cant be NED!... its just I must be a bit confused by the terminology.
What do you folks understand as the differences?
Thanks for your help 
Blessings
Hermiracles
__________________
2003 L/DCIS –> LWE: High G./Comedo - 6 nodes clear 6 wks Rx
04/07 2 miracles born ~ very grateful
06/07 Susp areas L/b
09/07 Stage 2 bilat. mastectomy R/ b. clear extens DCIS/IDC Paget’s 8 nodes clear ER(<5%) HER2+++ CT clear
11/07 Portacath - FEC
15/11/07 Stage 4 Emerg op - hip replacemt #NOF bone mets H/Taxotere
12/07 Rx to 'spots' on spine/R/hip/femur 3wkly H
2008 H+T mets to rib/sternum? Aredia CT clear! Cont. H + Aredia 07/08 1 wk Palliative Care - mets to lungs + ?1 to brain
09/08 Stop H complete Epirubicin 1wk PC new brain mets
10/08 2wks WBR 1wk PC 22/10/08 Tykerb/Xeloda 12/08 6 CEREBRAL METS COMPLETELY GONE! Rib mets down to <1cm.
01/09 Tumour markers normal! Rx to L/arm
03/09 LUNGS CLEAR (ALL NODULES GONE!), brain clear, liver clear. Bones stable! ~ THANK YOU GOD
07/09 Repeat CT Scan ~ ALL organs clear apart from bones which remain stable. I walk in gratitude.
***************
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01-28-2009, 05:31 AM
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#2
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Hermiracles,
Great news. I am so happy for you and your family. May many more blessings come your way.
Amelia
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01-28-2009, 06:04 AM
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#3
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Dear Miracle
I am not sure how to answer your question but you are a true miracle and your disease has turned around well in your favor.
Yippee!
__________________
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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01-28-2009, 10:56 AM
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#4
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Senior Member
Join Date: Sep 2005
Location: Alaska
Posts: 2,018
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Terminology
People tend to interpret the term "NED" a bit more loosely. It would be more accurate to say "no evidence of further disease" for those who have had progression at some point and then the progression stops.
"In remission" means "no progression" and applies to both those who have never had any progression after treatment as well as to those who have but for whom further treatment has stopped the progression as best can be determined.
Hope that helps.
AlaskaAngel
Last edited by AlaskaAngel; 01-28-2009 at 11:08 AM..
Reason: added "further"
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01-28-2009, 11:15 AM
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#5
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Senior Member
Join Date: Jan 2008
Location: Virginia
Posts: 116
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Dear Hermiracles,
Beyond wonderful news. I am so happy for you, your husband and your babies. You are truly a miracle and you have such a beautiful family. May many more blessings come your way.
__________________
Melissa
04/06, (42), 2cm tumor, 7/13 nodes, one positive node under clavicle
mastectomy/reconstruction
grade 3, stage lllb, er-65+, pr-90+, her2+++(80%)
4/AC, 12wks TH then 6wks rads
40 wks herceptin, and tamoxifen.
onc test tamoxifen resistance = poor metabilizer
04/07 ooph & on arimidex
08/07 completed herceptin
04/2022 - 16 year survivor!
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01-28-2009, 12:14 PM
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#6
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Senior Member
Join Date: Aug 2008
Location: San Francisco
Posts: 260
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Hermiracles,
I am so incredibly overjoyed for you and the amazing response you have had to treatment. Keep on staying strong. You are amazing!!
I noticed from your signature that you were diagnosed with brain mets in September 2008 and they were gone by December. That is amazing! I was recently diagnosed with brain mets and am taking Tykerb to see how responsive it is by itself. We will then weigh our options as to whether we should do Gamma or WBR. Any advice? How did you come to decide your treatment course for the brain mets? I want to have an outcome as amazing as yours!
Big hugs from California,
Courtney
__________________
4/17/08: Dx Stage IV at age 30 - extensive mets to liver, lungs, and bones. Er/Pr-, Her2+++
April 08-Aug 08:Taxotere, Cytoxan, Herceptin, Zometa - complete response!
Sept 08-Dec 08: Herceptin +Zometa for maintenance.
Jan 09-April 09: Brain mets. Add Tykerb. Watch and wait.
April 09: Gamma Knife 10 brain mets, add Xeloda.
Sept 09: Gamma Knife to 1 brain met.
Nov 09- April 10: Lung progression, add Gemzar to Herceptin, Zometa.
May 10- Sept 10: HER2 Vaccine Trial
Sept 10: Add Tykerb for more brain mets.
Oct 10: Gamma Knife to 7 brain mets.
Dec 10: Switch from Zometa to Denosumab.
Jan 11: Gamma Knife to 3 brain mets.
March 11: Gemzar/Herceptin for lung/bone progression.
April 11: More brain mets - Intrathecal Herceptin
June 11: Ixempra/Herceptin for lung, soft tissue progression.
Aug 11: Gamma Knife
Sep 11: Abraxane/Herceptin
Future: NED
Send me a PM if you'd like to follow my journey on Caringbridge.
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01-28-2009, 12:21 PM
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#7
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Senior Member
Join Date: Feb 2006
Posts: 1,014
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One of the oncologist down here explained it as NED..meaning "no evidence of disease"...meaning there is no cancer showing up at all on scans. ( Now we all know there may be some lurking that is too small to detect.) He said that he does not use the term REMISSION..unless the patient has had no disease show up for at least 5 years. If there is cancer still in the system that is not progressing the term "stable" is used. My oncologists chooses to use the term remission for me and that is what I use to describe myself when people ask. Only because that is what most people with little of knowledge of cancer can understand...they wouldn't know what NED meant. I am so glad to hear you are doing so well..sherryg683
__________________
Sherry
Diagnosed: December , 2005 at age 44
13+ positive lymph nodes
Stage IV , Her2+, 2 small mets to lungsChemo Started: Jan, 2006
4 months Taxotere, Xeloda, Hercepin
NED since April 2006!!
36 Rads to follow with weekly Herceptin indefinately
8 years NED now
Scans every year
Life is not about avoiding the thunderstorms, it's about learning to dance in the rain!
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01-28-2009, 01:17 PM
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#8
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Senior Member
Join Date: Feb 2008
Location: Bayarea,CA
Posts: 679
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Awesome news! I am overjoyed for you and your family! My prayers that you continue to give us more good news.
__________________
DX: 06-30-2007 - left breast -stage IIIB, Her2/Neu 3+++, ER weakly positive, PR-
Taxol+herceptin weekly for 3 months
FEC+herceptin every 3 weeks for 3 months
BRCA 1 and 2 - Negative
Jan 2008 - Bilateral mastectomy, prophylactic Rt. side.
Radiation for 5 weeks
Completed my yr of herceptin on 07-14-2008
Brain MRI - 3/2/09 Clean
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01-28-2009, 01:22 PM
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#9
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Senior Member
Join Date: Sep 2005
Location: Alaska
Posts: 2,018
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National Cancer Institute definition of "remission"
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01-28-2009, 04:59 PM
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#10
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Dear Miracle,
How wonderful to read your news.
Wishing you continued blessing.
Sherry thank you for sharing your info.
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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01-28-2009, 05:04 PM
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#11
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Senior Member
Join Date: Jul 2007
Location: Northern California
Posts: 764
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I am so happy for you and your family. This is wonderful news. Thanks for sharing with us.
__________________
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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01-28-2009, 11:32 PM
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#12
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Senior Member
Join Date: Oct 2005
Location: southern california
Posts: 287
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I think Alaska Angel said it best. I have wondered many times what each of the terms meant and have been given a variety of answers and that also goes for stage, grade and chance of recurrance also. Also most of the people I encounter that ask are clueless as to the fact that they just don't know if it is all gone or not. They make their best guess. I consider myself in remission for 5 years after the end of treatment and after that I would be considered cured. Although that is what my onc said I think I will always be in fear of recurrance. I think they just don't know.
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01-29-2009, 06:15 AM
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#13
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Senior Member
Join Date: Oct 2007
Location: Australia
Posts: 309
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Well thanks folks for all your input and congratulations - sometimes I dont know wether to celebrate or not!!?? so its good to come here and get a reality check!!
Reading your story Courtney - it sounds a lot like mine - though 30 sure seems like such a young age sis - I hope you are getting heaps of support - its great that you have joined up here - the folks here are wonderful.
As for my own story with the brain mets - its all still a shock to me. After I got the news that I had brain mets - and was on my way to have WBR _ I was pretty down because I had just received one bad report after the other - nothing seemed to be working - including the Herceptin. So I was taken off the Herceptin and sent for WBR (whole brain radiation) and then started on Xeloda and Tycerb.
In Australia you cant be on Herceptin and Tycerb at the same time anyway.... so I really dont know which of these treatments WBR, Xeloda or Tycerb has bought about such good results?? I am continuing X & T (at reduced doses because of side-effects) and next week I'm having a full week of radiotherapy to my body 'spot welding'  they call it hopefully to clear up any last remaining spots there!
I hope you get great results too Sis - we all so deserve it!! I do know the feeling of waiting, waiting to get some good news! Hope yours is coming soon.
Blessings all
Hermiracles
__________________
2003 L/DCIS –> LWE: High G./Comedo - 6 nodes clear 6 wks Rx
04/07 2 miracles born ~ very grateful
06/07 Susp areas L/b
09/07 Stage 2 bilat. mastectomy R/ b. clear extens DCIS/IDC Paget’s 8 nodes clear ER(<5%) HER2+++ CT clear
11/07 Portacath - FEC
15/11/07 Stage 4 Emerg op - hip replacemt #NOF bone mets H/Taxotere
12/07 Rx to 'spots' on spine/R/hip/femur 3wkly H
2008 H+T mets to rib/sternum? Aredia CT clear! Cont. H + Aredia 07/08 1 wk Palliative Care - mets to lungs + ?1 to brain
09/08 Stop H complete Epirubicin 1wk PC new brain mets
10/08 2wks WBR 1wk PC 22/10/08 Tykerb/Xeloda 12/08 6 CEREBRAL METS COMPLETELY GONE! Rib mets down to <1cm.
01/09 Tumour markers normal! Rx to L/arm
03/09 LUNGS CLEAR (ALL NODULES GONE!), brain clear, liver clear. Bones stable! ~ THANK YOU GOD
07/09 Repeat CT Scan ~ ALL organs clear apart from bones which remain stable. I walk in gratitude.
***************
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01-29-2009, 09:11 AM
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#14
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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It's so marvelous to hear your news! I hope you continue to always be "our miracle"!!!!! ma
__________________
MA in TX.
Grateful for each and every day....
Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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01-29-2009, 10:38 AM
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#15
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Senior Member
Join Date: Oct 2007
Location: Australia
Posts: 309
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Oh Ma - you really are such a sweetheart - true! I really hope to stay around and be a miracle too -don't we all eh? We all deserve to be!
Blessings
Hermiracles
__________________
2003 L/DCIS –> LWE: High G./Comedo - 6 nodes clear 6 wks Rx
04/07 2 miracles born ~ very grateful
06/07 Susp areas L/b
09/07 Stage 2 bilat. mastectomy R/ b. clear extens DCIS/IDC Paget’s 8 nodes clear ER(<5%) HER2+++ CT clear
11/07 Portacath - FEC
15/11/07 Stage 4 Emerg op - hip replacemt #NOF bone mets H/Taxotere
12/07 Rx to 'spots' on spine/R/hip/femur 3wkly H
2008 H+T mets to rib/sternum? Aredia CT clear! Cont. H + Aredia 07/08 1 wk Palliative Care - mets to lungs + ?1 to brain
09/08 Stop H complete Epirubicin 1wk PC new brain mets
10/08 2wks WBR 1wk PC 22/10/08 Tykerb/Xeloda 12/08 6 CEREBRAL METS COMPLETELY GONE! Rib mets down to <1cm.
01/09 Tumour markers normal! Rx to L/arm
03/09 LUNGS CLEAR (ALL NODULES GONE!), brain clear, liver clear. Bones stable! ~ THANK YOU GOD
07/09 Repeat CT Scan ~ ALL organs clear apart from bones which remain stable. I walk in gratitude.
***************
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01-29-2009, 06:18 PM
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#16
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Whatever you call it...it's fabulous news!
__________________
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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01-29-2009, 07:38 PM
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#17
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Senior Member
Join Date: Sep 2008
Location: Eugene, Oregon
Posts: 347
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I agree, whatever it is, it sounds really great.
Celebrate!
__________________
"Dancers Against Cancer" in the Eugene, OR Komen Race for the Cure 2010
Diagnosed 8/7/08 with stage 3 invasive ductal carcinoma, micropapillary pattern, Her2 3+, ER+,PR-, grade II, positive lymph nodes.
Received 6doses of Taxotere, Carboplatin with Herceptin continuing for a year...DONE.
1/28/09 Left Modified Radical Mastectomy, Right Simple Mastectomy.
Surgery pathology: No invasive carcinoma present and 17 lymph nodes removed all negative! Only small amount of carcinoma in situ in left breast.
March/April '09, Radiation to left chest wall.
Currently involved in Neratinib clinical trial.
"Well being I won
and wisdom too,
I grew and joyed in my growth;
from a word to a word
I was led to a word
from a deed to another deed." (Odin)
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01-29-2009, 08:01 PM
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#18
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Such wonderful news! Thanks for sharing - we love 'miracles'.
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement （600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa
Advocacy is a passion .. not a pastime - Joe
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01-29-2009, 08:51 PM
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#19
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Senior Member
Join Date: Feb 2006
Posts: 1,014
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It can be confusing and I am glad to get the offical meaning of remission..now I can say I am in remission and believe it. The oncologist that gave me his definitions was a pretty pessimistic guy and always pointed out the worst, he was my brothers oncologist. Mine has always been very optimistic. Your babies are so adorable and it is so good to see that you are responding so well...sherryg
__________________
Sherry
Diagnosed: December , 2005 at age 44
13+ positive lymph nodes
Stage IV , Her2+, 2 small mets to lungsChemo Started: Jan, 2006
4 months Taxotere, Xeloda, Hercepin
NED since April 2006!!
36 Rads to follow with weekly Herceptin indefinately
8 years NED now
Scans every year
Life is not about avoiding the thunderstorms, it's about learning to dance in the rain!
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02-01-2009, 09:30 AM
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#20
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Marilyn,
You are a miracle!
Joan
__________________
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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