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08-21-2009, 10:00 PM
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#1
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Senior Member
Join Date: May 2006
Location: northshore suburb of chicago
Posts: 1,093
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Update please on Joy
I haven't seen any new posts on Joy for a while and have been thinking of her so often. Keep praying for some good news to pop up about our "joyful", brightest smiling sister.
__________________
~Rina~
Dx:3/06 had a lumpectomy April 19, 2006
Her2+ er/pr- Stage I Grade 3 tumor size 1.4 cm, node negative
AC 4 dense doses
34 radiation treatments including booster doses
receiving herceptin every 3 weeks since late August 2006 for 12 months
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08-22-2009, 02:04 AM
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#2
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: Update please on Joy
Found her last posting on April 26 from the Members List. There's no e-mail address for her.
*********************************************
It is funny how quickly we can gain a habit. At least this is a healthy one. Every wednesday, once i realize it is wednesday-you know how that is-i hope, I kick it in for all of us.
I have been missing everyone and thinking about so many of you and following your updates.
I would like to share mine as I am very scared and sad. I have been on Tykerb and Herceptin for 6 weeks ish. Both of which I have been on before and had progression, but never had combined the two.
In the meantime I have not been feeling well. My whole torso feels tight and uncomfortable and sharp pains plague it frequently. I have rationalized it to be so many other things, but today's vist to the onc confirmed, at least by physical exam, what i was fearing. My liver is very swollen. Digestion is weird (full too fast, nothing sets right). We don't know 100% if it is irritated or mets freaking out or what. Markers had come down and then went up a little and enzymes did the same. They have all been worse, but it is the wrong direction. Bilirubin is good and A/G is a smidge low.
So, this is yet another treatment that has not worked. Epirubicin/Cytoxan worked, but we are hesitaant to go there again so quickly. I think that I am no longer her2 pos and that is why DM-1 failed and herc/tyk maybe failing. I am scared, scared, scared. Scared that no treatment is going to work any more, scared that I will never feel well again, scared that just when everything else in my life is exactly where I have always wanted it, that i will be taken.
Any thoughts or success stories after liver swelling would be SO appreciated. Tips or tricks for taking care of this are also very appreciated. I eat a lot of organic produce and grains-a little ice cream now and again-I'm only human. I have been supplementing with:
Milk Thistle
Fish/Krill Oil
Reishi
D
cal/mag
probiotics
lecithan
B's
just adding IP-6 again now
and adding Shitake/Maitake too
would really like to add Vodka today, but probably not a good idea
So Eric, Caryn, Sheila, Gemma, Irene, Marie, Ed and everyone who needs parayers or not-I am sending them with tremendous love and admiration.
__________________
with love and gratitude,
joy
dx stage I 2/2000*er/pr+; her- per IHC*lumpectomy*4 rounds A/C*30 rads*tamoxifen*dx stage 4 5/2002*huge mets to liver*tiny mets to lungs*stopped tamoxifen*5/02 taxotere/xeloda*her 2 checked with FiSH-her2+++herceptin *2/03 stopped chemo femara w/herceptin*zolodex*04 switched to aromasin w/herceptin*05 high estrogen tx*11/05taxol/carbo*7/06 stopped chemo; megace/herceptin*9/06navelbine/herceptin*5/07tykerb/xeloda great response*4/08 progression in liver; ooph/ faslodex /herceptin
6/08 began Herceptin DM-1
9/08 progression
__________________
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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08-22-2009, 08:45 AM
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#3
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Re: Update please on Joy
Always praying and wondering too. Hope to hear something.
__________________
"Be still and know that I am God." Psalm 46:10
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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08-22-2009, 08:59 AM
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#4
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Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
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Re: Update please on Joy
Waiting to hear some news too...hope all is well. XO 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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08-22-2009, 10:02 AM
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#5
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Senior Member
Join Date: Oct 2005
Location: TAMPA, FL
Posts: 568
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Re: Update please on Joy
Oh Joy - it is so good to hear from you. Give this combo some time honey, if not are you a candidate for the Her/DM1 trial.? I did wonderful on that. It actually got me NED for the first time ever. I am just so sorry that you have to feel so lousy along the way.
My prayers and thoughts are always with you my friend.
Take care of yourself and you are NOT going anywhere YOU are not ready for yet. Just keep that thought and pass healing messages through your body.
we all love you girl.
__________________
Irene from Tampa
1996 - INFILT DUCTAL CAR.W/ LYMPH NODE INVOLVEMENT. ADRIA/CYTOXIN/5FU
1999 - RECURR. TO AUXILA AND 2 TUMORS IN LIVER
TREAT: STEM CELL REPLACEMENT/HERCEPTIN.
2002 - RECUR TO LIVER
TREAT: NAVELBINE, THEN GEMZAR, THEN XELODA.
2004 - TUMORS STILL IN LIVER
TREAT: RFA TO LIVER
STABLE UNTIL
2004 - TUMOR PROGRESSION IN LIVER.
TREAT: RESECT HALF OF LIVER.
2005 - RECURR TO LYMPH NODE OUTSIDE OF LIVER.
TREAT: TAXOL/CARPO/HERCEPTIN. FAILED ON
THIS TRIO. STARTED ON ABRAXANE.
2006 - PROGRESS WITH 2ND TUMOR GROWTH.
TREAT: AUG. BEGAN ON TYKERB/XELODA
TRIAL. CONSIDERED STABLE TO DATE.
2007 - TAKEN OFF OF TYKERB/XELODA TRIAL DUE TO
PROGRESS STARTING TYKERB/AVASTIN.
NOV 2007 - SCANS SHOW PROGRESS TUMOR GROWTH
IN ABDOM. AND TWO NEW TUMORS IN NECK AREA.
BEGAN HERCEPTIN/AVASTIN/TAXOTERE
Feb 08 - Ixempra/Xeloda
June 08 - Her/DM1 trial
"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."
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08-23-2009, 08:24 AM
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#6
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Senior Member
Join Date: Oct 2007
Location: Australia
Posts: 309
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Re: Update please on Joy
Thinkng of you Joy.
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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08-24-2009, 04:26 AM
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#7
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Senior Member
Join Date: Sep 2007
Location: Dublin, Ohio
Posts: 29
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Re: Update please on Joy
I hope no news is good news. Positive thoughts to you, Joy.
Lori
__________________
Lori
Diagnosed 07/05, Stage 1
Extensive DCIS, .5 mm invasive
Mast
No nodes.
10/05 4 A/C & 1 yr of Herceptin
06 Proph Mast
Lat Flap Recon - failed on one side, replaced w/expander
NED
HER + 3, ER-, PR-
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08-24-2009, 04:37 AM
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#8
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Re: Update please on Joy
Joy,
I have been thinking of you. Hope to hear from you soon.
Amelia
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08-24-2009, 07:28 PM
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#9
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Senior Member
Join Date: Nov 2005
Location: Colorado
Posts: 76
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Re: Update please on Joy
Thinking of you Joy.
Karen in Colorado
__________________
Karen Raines Hunt
Dx April 2005 at age 46
stage 3A, very large (12cm) tumor
2 positive axillary lymph nodes
ER+/PR+, Her 2 +++
Bilateral mastectomy, radiation, reconstruction, A/C, Taxol, Herceptin, Tamoxifen, Aromasin
5 yrs since diagnosis and NED
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08-24-2009, 09:19 PM
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#10
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Senior Member
Join Date: Jun 2006
Location: san luis obispo, ca
Posts: 1,150
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Re: Update please on Joy
Joy and jennifer,
We have held a vigil here for you during these trying times. May God hold you closely and deeply and softly in his love for you. We miss you but know you will always be here with us. Just sending you our love tonight, unconditionally.
Love,
Vickie
__________________
Love and Hugs, Vickie
Life's not about waiting for the storm to pass,
It's about learning to dance in the rain.
Feb 04 IBC IIIC/IV er-/pr- her2+++
3/04 TCH X4
7/ 04 MRM 9/04 Taxol/herceptin wkly 1 yr 33X rads
11/04 skin mets 33x rads,10/05 Avast/Herc. 11 mos.
8/ 06 PET mets lymphs, neck
9/ 06 Navelbine/herceptin
11/ 06 PET NED
2/ 07 skin mets, 4/07 Xeloda, 5/07 add Tykerb
2/ 08 Tykerb failed. Doxil /Herceptin 6 months
8/08 PET skin mets, 8/08 Abraxane/Avastin
11/ 08 PET prog., skin mets
1/09 PET/CT progress, 1/09 Ixempra, 2/09 add Xeloda and low dose Naltrexone
2/09 off Ixempra/Xeloda
3/09 navelbine/herc/cytoxin 4/09 PET shows regress.7/09 start Topotecan. Failed.
8/09 extensive mets rgt brst, back and torso. starting Pazopanib clinical trial.
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08-27-2009, 07:16 PM
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#11
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Senior Member
Join Date: Oct 2005
Posts: 823
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Re: Update please on Joy
Bumping this up. Any new's on Joy??? Thinking and praying for her.
__________________
Vicki
Texas
Biopsy Dx'd 3-23-05 Age 48
MRM 4-5-05 w/ 2 tumor's 5cm, and 6 cm (right side)
IDC (poorly differentiated infiltrating ductual carcinoma)
5+/16 nodes
Stage III A
Grade 3
ER/PR-, Her2/neu ++
Ki67 78%
Begin Chemo 5-2-05 4XAC Dose Dense , 4X Abraxane Dose Dense (ended August 05)
28 Rad's ended October 13 2005
Started Herceptin Weekly August 2005 for one year
Had a Simple mastectomy left side after Mamo showed incresed micro-calcifications. Jan. 17 2006.
Brain MRI Feb.2006--All Clear
August 28, 2006 Last Weekly Herceptin.
October 2006--Colonoscopy, 6 Polyp's removed--all B9
PET Scan July 2007
Abdominal MRI Oct. 2007---2 Right Kidney Cysts
Core Biopsy-- Lump on Scar Line 1-10-08---B9
Brain MRI 6-2008--All Clear
PET/CT Scan 6-2008
Sept. 8 2008, 4CM area removed from mastectomy scar line. Proved to be B9.
PET/CT Scan-- July 2009 --All clear
August 17,2009 ---Had Port Removed
6 Years NED -- April 5,2011
DX'd with Melanoma left arm 10-10-2011
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09-01-2009, 06:41 PM
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#12
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Senior Member
Join Date: Feb 2006
Location: Watkinsville, Georgia
Posts: 356
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Re: Update please on Joy
bumping it up
__________________
[/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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09-04-2009, 10:45 AM
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#13
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Senior Member
Join Date: Oct 2007
Location: Scottsdale,AZ
Posts: 43
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Re: Update please on Joy
Still no news? Can anyone call her or her sister? Worry time......
__________________
Dx 5/1/07 (age 47), Left IDC
ER less than 5% +, PR -, HER+ FISH 5.4
Lumpectomy 5/07, Quadrantectomy 6/07
AC 7/07 -10/07, Liver mets dx 9/07 (liver bx)
Taxotere/Herceptin 10/07 -12/07
Herceptin only 1/08 - 7/08
Mastectomy 3/08, RADS 4/08 - 5/08
Brain MRI 5/08 clear
Gemzar/Herceptin 7/08-9/08
Lymphedema 8/08
RADS/Hyperthermia 10/08-11/08
Abraxane/Herceptin 12/08-3/09
Doxil/Herceptin 3/09 to 5/09
Xeloda/Tykerb 6/09-10/09
Navelbine/Xeloda/Tykerb 10/09-12/09
Tykerb/Herceptin 1/11/10
Tykerb/Herceptin/Ixempra 2/1/10
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09-04-2009, 11:44 AM
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#14
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Senior Member
Join Date: Oct 2005
Location: TAMPA, FL
Posts: 568
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Re: Update please on Joy
Hi Barbara -
I just emailed Joy's sister to ask about her. I told her we were all praying that everything is going ok for her.
Hopefully hear back from her soon or she may post on site.
__________________
Irene from Tampa
1996 - INFILT DUCTAL CAR.W/ LYMPH NODE INVOLVEMENT. ADRIA/CYTOXIN/5FU
1999 - RECURR. TO AUXILA AND 2 TUMORS IN LIVER
TREAT: STEM CELL REPLACEMENT/HERCEPTIN.
2002 - RECUR TO LIVER
TREAT: NAVELBINE, THEN GEMZAR, THEN XELODA.
2004 - TUMORS STILL IN LIVER
TREAT: RFA TO LIVER
STABLE UNTIL
2004 - TUMOR PROGRESSION IN LIVER.
TREAT: RESECT HALF OF LIVER.
2005 - RECURR TO LYMPH NODE OUTSIDE OF LIVER.
TREAT: TAXOL/CARPO/HERCEPTIN. FAILED ON
THIS TRIO. STARTED ON ABRAXANE.
2006 - PROGRESS WITH 2ND TUMOR GROWTH.
TREAT: AUG. BEGAN ON TYKERB/XELODA
TRIAL. CONSIDERED STABLE TO DATE.
2007 - TAKEN OFF OF TYKERB/XELODA TRIAL DUE TO
PROGRESS STARTING TYKERB/AVASTIN.
NOV 2007 - SCANS SHOW PROGRESS TUMOR GROWTH
IN ABDOM. AND TWO NEW TUMORS IN NECK AREA.
BEGAN HERCEPTIN/AVASTIN/TAXOTERE
Feb 08 - Ixempra/Xeloda
June 08 - Her/DM1 trial
"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."
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09-04-2009, 01:40 PM
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#15
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Senior Member
Join Date: Feb 2007
Location: Paris, France
Posts: 858
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Re: Update please on Joy
Joy and Jennifer, just to say I am thinking of you, hoping that no news means you are too busy. I would love to see Joy's smile again. 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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