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04-01-2009, 10:21 AM
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#1
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Senior Member
Join Date: Jul 2005
Location: Ft. Collins, Colorado
Posts: 546
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Hi gang
I have missed you all. I had to take a break for two reasons. The first because I was without internet again (those bills, you know) and because I just needed a cancer break-duh-don't we all.
I have been on Tykerb and Herceptin for about a month and have had very few side effects. Really just perpectually dry mouth, nose, eyes and some pain and dryness in my hands.
I had my first markers and cmp drawn last week and got the results yesterday. I am pretty pleased and would love to hear what you guys think. My CA 27.29 ,which has been fairly accurate for me to my chagrin at times, dropped from 340 to 274. My alk phos which was quite high for awhile is dropping and is now 272-still high, but it has been much higher. And my alt/ast are stable at just slightly above normal.
Unfortunately, i can be so jaded that I hesitate to get too excited. But I am happy. I am also happy to see the new developments that have appeared on our site for HER2.
I am guessing that if I am responding to Tykerb and Herceptin in the liver, then I am still HER 2 positive in those sites. Would you agree?
My kids are good. The twelve year old daughter is, of course, acting like a 12 year old and that is challenging. Sure brings back some ugly memories of my own battles with my mom at that age. My 10 year old still mostly thinks I am pretty great and does what I ask. Every once in a while I see a bit of what I call "snot factor". It can be so disappointing when you try so hard to raise nice people and these bits of ick start to surface. I bite my tongue a lot because what I want to say sometimes is quite snotty itself, but...I don't say those things. At least not until I talk to my friends with their own 12 years olds.
I hope to write more soon, but I am plugging away at a huge to do list today and don't want to get caught up in computer land. I am so happy to read about some recent triumphs and good results. I have been praying along with you all every day for all of us.
Thanks for being here!
__________________
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
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04-01-2009, 10:42 AM
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#2
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Senior Member
Join Date: Feb 2008
Location: South East Wisconsin
Posts: 3,431
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Sounds good to me Joy. I plugged "snot factor" into pubmed and came up dry. Guess you're on your own with that. Do you happen to have an article link regarding using H & T together?
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04-01-2009, 11:19 AM
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#3
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Senior Member
Join Date: Jun 2007
Location: RHODE ISLAND
(Ed getting me a latte on 2nd Cancerversary Cruise 2008)
'BELIEVE': To accept as true or real, To have faith in, To presume
ALWAYS BELIEVE
Posts: 2,999
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Always a Joy to hear from you and to find your post with that giant smile. I find myself making lattes and always saying a prayer and thinking only pleasant thoughts for you as I do it. It also pleases me to see that you are keeping busy and out of the police blotter (haha). This post made my day and I really do not want to keep you.
I just want to say that you are always in my thoughts and how happy I am to read your update. As for the 'snot factor', I think I am going to have to use that in the future. Do not fret though, those little ones will someday thank you for being such a kind spirited and strong Mom. It will be that time that you will find everything opposite the 'snot factor'.>>Latte-Loving Smiles>>Believe51
__________________
9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
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04-01-2009, 11:39 AM
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#4
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Joy,
It's so good to hear from you. I am glad everything is going well for you. Do drop by when you have a spared moment. We love you.
__________________
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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04-01-2009, 12:50 PM
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#5
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Senior Member
Join Date: Dec 2005
Location: Walnut Creek, CA
Posts: 438
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Joy,
Your news is good! I believe you will get great results from this treatment.
Stay strong.
Hugs,
Karen
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04-01-2009, 01:34 PM
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#6
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Joy,
Glad to hear from you. Sounds like the treatment is helping. You sound stronger this time.
Amelia
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04-01-2009, 01:58 PM
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#7
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Joy Girl!
Good news is good news is good news!!!
I'm so glad that it is the right direction.
May your numbers keep falling.
Much love,
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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04-01-2009, 02:03 PM
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#8
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Senior Member
Join Date: Aug 2006
Posts: 3,380
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Joy,
So glad to hear your news. Thanks for checking in. Best of luck to you with this treatment.
Hopeful
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04-01-2009, 02:42 PM
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#9
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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So happy for you Joy, good luck with the rest of the tx's!
__________________
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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04-01-2009, 09:10 PM
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#10
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Senior Member
Join Date: May 2006
Posts: 3,142
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Hi gang
Good to have you plugged back into our little group.
It seems to me I read the results of a phase 3 clinical trial using Herceptin and Tykerb that had good results.
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04-02-2009, 04:51 AM
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#11
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Senior Member
Join Date: Nov 2007
Location: New Jersey
Posts: 889
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Glad to hear that the treatment is working for you. Stay positive coz attitude is everything!
__________________
dx aug 03 invasive dcis 1 cm
er/pr/her2+
bcs 8/4/03
bcs 8/21/03 0/16 nodes
tx 4x ca 36 rad tam
postmenopausal 06 aromasin
sept 07 biopsy node in neck
muga/pet/cat/bone mets to lungs nodes and liver stage iv
tx hki-272
tx not working switched to taxol herceptin
Taxol not working switched to navelbine
navelbine is causing bad neuropathy
starting gemzar
gemzar quit on me now on Ixempra due to increasing number and size of liver mets
another progression starting tykerb/xeloda
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04-02-2009, 11:49 AM
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#12
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Senior Member
Join Date: Feb 2008
Location: Bayarea,CA
Posts: 679
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Very happy for you, Joy! Praying for your continued good results and wishing you the best! Keep in touch when you can...
love,
shobha
__________________
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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04-04-2009, 08:50 PM
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#13
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Senior Member
Join Date: Sep 2005
Location: Madison, Connecticut
Posts: 638
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Hi Angel!
How nice to see you doing well and sounding great! Your kids and home life sounds so normal and familiar! I just picked up my 14 y o son from a boy/girl party...boys are so talkative at this age!! (not!) How was the party...good....who did you talk with? .... Tyler... how was the food...good......and so it goes!
How is YOUR boyfriend thing working out? The last I remember you were dating a real nice guy?!
Stay well you sound great!
Love Kim from CT
__________________
2001 - Stage 0, lumpectomy, radiation, tamoxifen
2004 - Stage 4, mets to 4 lobes of lungs and liver, lumpectomy, er/pr -, her2 neu+++, Herceptin and Navelbine then Herceptin only.
2005 - Breast Ca vaccinations with the Tumor Vaccine Group in Seattle
2011 - Still Herceptin only and NED
2011, June - STOPPED Herceptin and kicked up my heels!
2012, February - 1 small tumor came back to haunt me in my lungs - back on Herceptin only, tumor stable.
2015, November - tumor on lungs removed (Segmentectomy), back on Herceptin only
Received U of W vaccine clinical "booster" Vaccine
2022 On Herceptin and NED continues - WOOT WOOT!
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