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Old 04-25-2008, 04:56 PM   #21
Andrea Barnett Budin
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Location: LAND OF YES! w/home in Boca Raton, Florida Orig from L.I., N.Y. Ever hovering IN THE NOW...
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Wink Cancer Is Not The Enemy. Fear Is Our Greatest Foe!

Hi Karen, my sweet Sister,

I wish I had medical advice re your situation, but I surely understand your fear and indeed panic. I imagine most of us have been there. Here's what I've learned on this score.

I too have felt desperate, deep in the woods, but I kept reminding myself that I was not lost. My body ached with the death of my cancer cells, but my Spirit felt strong, brave and determined. I KNEW the storm would not touch my core. I would not let it! My will was great and I seemed to possess the awareness that I would triumph. Despite it all, I stayed steadfast. This is what I am praying will come to fill your thoughts.

I KNOW that thoughts that are filled with panic and dismal prospects -- will attract that to us. So, I work each day at acknowledging these destructive thoughts, experiencing them, venting them (by talking to others and writing my feelings down, as you are doing!) and then ridding myself of all that damning negativity!

Toxic thoughts have a similar effect as toxic substances. We don't want them in our body -- or in our mind. Remember -- delay is not denial. Though your desired results are not now at hand, that does not mean you have failed. Let's at least wait for the CT scan results, to see whether this course of tx is working. There are other options should it prove not to be the correct piece to your puzzle.

The tangible evidence of your efforts lies before you. Trust that this is so. BELIEF is far more powerful than hope. To call your desired outcome to you, infuse your thoughts with this electrifying might. AS YOU EXPECT THE BEST, SO IT WILL BE. It is a Universal Law.

Let go of all the horrid scenarios that are darting out you. Instead, see yourself vividly -- surrounded by family and LOVE. The cancer will slowly recede against the strength of your Soul and will!

Do not mistake what you know for all there is. Surely, investigate every avenue, but with a calm of being led. What you can control are your thoughts. In fact, this is your job as a patient who will not settle for anything less than success.

My arms surround you, and my prayers and loving, healing energy are streaming out to you. I believe you can feel this as you read my words. Breathe, my sweet Sister. You must be a positive entity. Let how you respond tell all who you truly are, a Warrior Queen, full of grace and courage. Know that you are never alone. Never. I believe Teachers, Guides and Guardian Angels walk with us. Stay strong, brave and determined, Karen. Release the fears. Fear and faith cannot occupy the same space. Open your heart and let Universal LOVE fill you up to overflowing. It will help you stay the course. You are headed to victory. Hold on to that thought, please...
Andi
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Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 04-25-2008, 05:11 PM   #22
Joan M
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Karen, You still have options. And it's good that you're checking into the chemoembolization. Also, thanks again for your PM about RFA. Love and hugs, Joan
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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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Old 04-25-2008, 05:33 PM   #23
BethC
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Karen,
I'm praying for you and sending you hugs! Keep us up to date - we love you!
Love,
Beth
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DX 9-19-07 at age 40
DCIS, Inv. Duct. Car. 3 cm
Positive lymph node biopsy
Er+Pr+Her+++
Carboplatin/Taxotere/Herceptin
10-1-07 -- 1-16-08
Herceptin every 3 weeks until 9/24/08
Lump. and node dissection 2-12-08
BRCA1 and 2 negative
30 rads finished 4-23-08
oophorectomy 5-6-08
Femara started 5/25/08
Zometa for osteoporosis every 6 mo. started 9-24-08

Married 16 years!
3 kids - daughter (10), twin sons (7)
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Old 04-27-2008, 04:26 PM   #24
fullofbeans
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Karen,

i have had 3 chemoemolisation (TACE) and all went absolutely great.. and well Iam still NED. I recommended it to someone else here in London and she is now NED too. You can go home on the same day. My liver functions have been fine since and my friend also.

I am not sure what drugs you will be using and if you are trully wanting to get involved with it I can find out what it is I received.

I went to chemoembolistion not as a last resort but as my first treatment option I was still doing taxotere at the time. Both in combination worked like a treat, once my tumours reduced by 30%in one afternoon, sweet. I had absolutely no doubt that I have made the right choice for me.

Best wishes
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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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Old 05-02-2008, 01:19 PM   #25
Believe51
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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
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Wink Karen

Thinking about you today as always and sending prayers LOUD & CLEAR TO GOD!! Love You Babe, keep the faith and try not to lose hope even though this is the hardest thing we have ever done!>>Believe51
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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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Old 05-02-2008, 04:28 PM   #26
Mary Anne in TX
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Hi Karen!
You're on my mind this afternoon and I'm saying my "Karen prayers" for you. Lots of love and hope and peace of mind. ma
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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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Old 05-02-2008, 08:42 PM   #27
Jackie07
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Karen,

Don't know if you have had the procedure done or not. I am learning new things every day. Did some checking into "chemoembolization". Here's what I've got. Looks like it is a very good procedure and quite promising. Hope you'll feel better soon.
Attached Files
File Type: doc Chemoembolization.doc (18.5 KB, 100 views)
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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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Old 05-02-2008, 09:13 PM   #28
ElaineM
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chemoembolization

Hi,
I have never heard of it, but that doesn't mean it is not real. Keep bugging your docs. Keep asking about it and other possible treatments.Do an internet search. There must be someone on this planet who knows something about it and where to get it. Hang in there !! Try to stay positive.
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Peace,
ElaineM
12 years and counting
http://her2support.org/vbulletin/showthread.php?t=48247
Lucky 13 !! I hope so !!!!!!
http://her2support.org/vbulletin/showthread.php?t=52807
14 Year Survivor
http://her2support.org/vbulletin/showthread.php?t=57053
"You never know how strong you are until being strong is the only choice you have." author unknown
Shared by a multiple myeloma survivor.
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Old 05-02-2008, 09:29 PM   #29
ElaineM
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chemoembolization

Hi
My curiosity got the best of me. I did a quick Yahoo search and found the following links for you and your doc. Theylook like they are from reliable sources. An interventional radiologist is a radiologist who is certified to do some surgical procedures like biopsies and other treatments rather than just reading scan films etc.
http://www.sirweb.org/patPub/cancerTreatments.shtml
http://www.sirweb.org/patPub/cancerTreatments.shtml
http://www.cancer.gov/Templates/db_a...px?CdrID=46708
Good luck.
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Peace,
ElaineM
12 years and counting
http://her2support.org/vbulletin/showthread.php?t=48247
Lucky 13 !! I hope so !!!!!!
http://her2support.org/vbulletin/showthread.php?t=52807
14 Year Survivor
http://her2support.org/vbulletin/showthread.php?t=57053
"You never know how strong you are until being strong is the only choice you have." author unknown
Shared by a multiple myeloma survivor.
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