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Old 07-04-2009, 12:36 PM   #1
hutchibk
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Brenda's Manifesto ~ just for the heck of it.

When I visit the forums on Her2support, I consider the site a big house with endless rooms...

I treat each thread as a room that has a discussion going on behind the door.

Often I can tell by by the "sign" on the door that I want to go in and hang out for a while.

Often I can tell by the "sign" on the door that I don't have interest or energy or knowledge for that discussion, and I move on to the next door.

Sometimes I don't know until I peek in, and then decide if I want to stay or turn around and leave.

Sometimes I sit in the back of the room, sometimes I stand around in the front, sometimes I take a little time to decide if I am engaged enough to move closer to the discussion.

If I do decide to contribute to the conversation, I decide the most appropriate way to chime in, whether as a supporter, a student or a skeptic. I know that politeness and cordiality is of utmost importance, even in disagreement. I know that my contribution might be met with agreement and might also be met with debate or disagreement. I choose not to become engaged in debates from an emotional stance, as it is not productive for me or the conversation.

If I choose to reserve a room and start my own discussion I know going in that I might enjoy the attention and kudos from supporters, the questions and curiosity from students, the disagreement from skeptics or even the potential debate from detractors.

Here's the key for me: coming at it from either direction, I make choices that can result with either joy or something less than joy, potentially protest or discord. If I contribute to a discussion, I recognize that I choose to knowing that I might be a lone voice. If I lead a discussion, I recognize that I choose to knowing there is the possibility of dissent.

I make these choices with full mindfulness and consciousness and the desire to be a compassionate and non-judgemental participant in the Her2support forums.

I haven't always been perfect at abiding by my own rules, but I am always learning, and hopefully evolving, and I strive to act appropriately in a way that would make my momma proud.
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Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."

Last edited by hutchibk; 07-04-2009 at 12:38 PM..
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Old 07-04-2009, 01:35 PM   #2
Andrea Barnett Budin
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Smile EXCELLENTE (how do you spell that anyway?)

Your manifesto is right on. It is what I carry around in my heart. And I am choosing to second every word you have just posted. Your Momma would be so proud. This is the essence of this wonderful forum. So well phrased, Brenda/Hutchy. Bravo. I truly appreciate your summation and perspective, just for the heck of it... Thank you.
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'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 07-04-2009, 02:19 PM   #3
Believe51
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Well said Brenda, I needed to hear your feelings today and I cannot tell you how that makes me feel. I have been too emotionally and physically exhausted to contribute the opening of many doors lately but happy to join you now. That being said I wanted to let you know I appreciate your 'manifesto' and how perfectly, once again, you have placed your feelings out to us.

The way I treat this entire journey is a' la carte, especially in regards to threads. My appetite is not the same each day so I have to make choices of what can go on my plate, what I can digest and go on not feeling bloated with. I join each meal and take what I can eat, I push away what I cannot or will not eat and I never criticize the chef. His cooking is a gift that he willingly shares with others. Sometimes I cook and I know that not everyone will enjoy the dish or maybe cannot fit that on their plate. I cook knowing that not everyone will enjoy my menu. But I cook to share my kitchen and I do it with the intentions that not everyone will come. It is with the comfort of those that do come and those that may join secretly, that I can provide them food and shelter. My guests do not always have to compliment me on the dish I supplied, we all have different tastes. Just joining me and sitting besides me through this all is enough. Just knowing that I may sometime cook something that you could take home is my goal. But I chose to cook and share recipes, I cook with consideration to everyones dietary restrictions. And I also eat within mine.

So Dear Sister, I thank myself today for opening this door this July 4th. I enjoyed my visit and the importance I found in your words. Thanks for lunch. Have I told you how much you mean to me lately???>>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 07-04-2009, 02:24 PM   #4
Bill
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Hello, Ladies! Just wanted to chime in here with my agreement.
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Old 07-04-2009, 03:14 PM   #5
harrie
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Brenda, exceptionally well said!! That is exactly how I perceive each of these topics and threads! Your analogy is absolutely perfect.

I loved it all, but my favorite in conclusion was this:
"I make these choices with full mindfulness and consciousness and the desire to be a compassionate and non-judgemental participant in the Her2support forums."

Thank you.
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*** MARYANNE *** aka HARRIECANARIE

1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen

2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy

2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara

Last edited by harrie; 07-04-2009 at 03:18 PM..
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Old 07-04-2009, 04:25 PM   #6
Chelee
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Brenda, I love your manifesto...absolutely excellent! I totally agree with every part of it. It covers, & says it all. Thank you!

Chelee
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DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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Old 07-04-2009, 06:04 PM   #7
Debbie L.
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Beautiful!

Thank you, Brenda.

If we could all come closer to following your manifesto, there would not be all this childish "he said, she said" kind of yapping going on and we could all just say what is true in our own hearts, knowing that no one else would take it personally. We could debate SUBJECTS, not people.

There's nothing wrong with disagreement - it is stimulating and I think that we all learn something when we try to express our point of view. In order to do that clearly and politely, we have to consider someone elses' (different) perspective. And in doing so, we learn, and they learn, at it can be a good thing.

Maybe if we were allowed to continue our debates a little longer, we'd move closer to the ideal of your manifesto. Those who get overemotional and/or "hurt" would drop off and the wise voices like yours, Brenda, would prevail. We might not change our minds, but we would learn to respect other perspectives, and we would learn how healing it can be to give and receive respect for where each of us stands. We can't learn without practice, right?

Or then again, maybe the miserable thread and personal attacks would go on FOREVER and we'd all leave the forum in disgust or sadness (laughing, sort of). But we won't know unless we try. I'd like to see us try. I'm pretty trusting that in this forum, wisdom and love would prevail.

I'm certainly not an expert but as you said is true for you, I move in the right direction every time I get to have a "discussion" and I get to practice.

I do think that the written word is a whole different medium than we sometimes realize, especially when the topic sparks emotion. It is so hard to infuse tone accurately into an email message. I may think that I'm ranting at a topic that riles me, and you may think I'm ranting at YOU, and from there it can spiral. I started to type spiral "downward", but then stopped. It could also spiral upward also, if we hold to your manifesto.

Thanks again, Brenda, for caring so much about this forum that you took the time to write that.

Love,
Debbie Laxague
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3/01 ~ Age 49. Occult primary announced by large (6cm) axillary node, found by my husband.
4/01 ~ Bilateral mastectomies (LMRM, R elective simple) - 1.2cm IDC was found at pathology. 5 of 11 axillary nodes positive, largest = 6cm. Stage IIIA
ERPR 5%/1% (re-done later at Baylor, both negative at zero).
HER2neu positive by IHC and FISH (8.89).
Lymphovascular invasion, grade 3, 8/9 modified SBR.
TX: Control of arm of NSABP's B-31 adjuvant Herceptin trial (no Herceptin, inducing a severe case of Herceptin-envy): A/C x 4 and Taxol x 4 q3weeks, then rads. Raging infection of entire chest after small revision of mastectomy scar after completing tx (significance unknown). Arimidex for two years, stopped after second pathology opinion.
2017: Mild and manageable lymphedema and some cognitive issues.
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Old 07-04-2009, 07:46 PM   #8
vickie h
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Brenda, thanks for your wonderful analogies. You summed it up so perfectly and wrote it with such clarity that I feel blessed to have read it. And Debbie, I, too agree with what you said...so very well put.
Much love,
Vickie
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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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Old 07-04-2009, 08:27 PM   #9
Yorkiegirl
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Brenda I TOTALLY LOVE your Manifesto. Thanks for your thoughts.
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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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Old 07-04-2009, 09:09 PM   #10
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Thanks, Brenda, for stating it so eloquently. And thanks, Marie, I really 'get it' when it involves food. And thank you, Debbie, your analysis is 'excelente' ('Spanish' spelling.)
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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

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Last edited by Jackie07; 07-04-2009 at 10:35 PM..
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Old 07-04-2009, 10:28 PM   #11
hutchibk
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Debbie L. - A particular discussion with you was one of my great learning experiences and a catalyst for some of my personal evolution on the site... (I think you know .) That's when I started to embrace 'the power of the written word when the spoken word is not possible' theory... and to teach myself about the power I have over my own choices and responses VS. unconscious and/or emotional reaction.

Two things that you said are so cogent and crucial to the forums here, I hope all will consider their validity:

1. "We could (should) debate SUBJECTS, not people."

2. "I may think that I'm ranting at a topic that riles me, and you may think I'm ranting at YOU!"

I am proud that you read this and liked it!
__________________
Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."

Last edited by hutchibk; 07-04-2009 at 10:40 PM..
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Old 07-05-2009, 09:52 AM   #12
karenann
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I always love what you have to say Brenda! Once again, thank you.
Karen
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Old 07-05-2009, 02:47 PM   #13
Debbie L.
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Brenda said: Debbie L. - A particular discussion with you was one of my great learning experiences and a catalyst for some of my personal evolution on the site... (I think you know .)

(Smiling warmly) Yes, Brenda - that "particular" discussion was an important learning experience for me, too. And as an added bonus, I found another kindred spirit connection.

It seems to me that you are a quicker study than me, though - you've evolved a lot further! (laughing, again). I still am working on being able to disagree with tact, dispassion, and compassion. Again, your manifesto is of great value to me as I learn these skills. I think it should be a sticky, at least for awhile, so we can all remember to read through it, before responding, when we read something that pushes our buttons.

Love,
Debbie
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Old 07-05-2009, 05:03 PM   #14
hutchibk
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I love you DL! And I was so proud to get to hug you as SABCS. You are one of my teachers, I have learned so much from reading your posts. They always make me think a little deeper than I would have without them...
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Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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Old 07-06-2009, 08:05 AM   #15
Jean
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Location: New Jersey
Posts: 3,154
Brenda,
Thank you agan for taking the time to share your manifesto! Well done...I loved the section where you write...to act appropriately in a way that would make my momma proud.

No matter how old we get we carry the respect and approval of what we learned as children...from our Mothers. Very wise Brenda. I used to tell my son, if you can't say it in front of me, well than don't say it.

You have made your Mother PROUD!
Hugs,
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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Old 07-06-2009, 11:07 AM   #16
hutchibk
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Posts: 3,519
You know Jean and Andi - what's funny about making my momma proud is that it took me a lot of years to figure out what that meant for me...

She was feisty and principled and conscious, albeit in a quiet and delicate way. She spoke very loudly softly, with well chosen, budgeted words. She was classy and elegant and always tactful, even when angered by something. But you always knew her essence and where she stood on something and she rarely (LOL!) had to beat you over the head with it, unless you weren't paying attention. But she was well worth paying attention to (unless you were a teenage daughter, ) - she was one of the funniest and most entertaining ladies I will ever know. And she was a lady - something I will probably never accomplish.

I am much more contrary and blustery (and willing to show it) than she was... but I do strive to do things in a way that would make her proud. She would never expect me to be exactly like her, but she would expect me to think through what comes out of my brain through my lips or typed into a keyboard.
__________________
Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."

Last edited by hutchibk; 07-06-2009 at 05:02 PM.. Reason: typos
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Old 07-06-2009, 12:54 PM   #17
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...
Posts: 1,904
Smile Just had to respond...

Brenda it is always so interesting to read your thoughts. I really would have enjoyed talking to your Mother from all you write. Thanks for sharing that. It's nice to get to know a person by understanding where they came from. Adds another layer to our perspective.

My Mother was very bright, extremely alert and aware, well-read, politically astute and quite timid. She did not speak up publicly. I knew her views from private conversations. My Mother was always a lady, as many commented over the years to me. She was a genteel Southerner who was hard-working, dedicated and highly empathetic. My Sister and I were brought up to be well mannered and considerate of all people, regardless of their station in life. To be kind-hearted people. Mom was a liberal thinker and stunning to look at.

Believe it or not, I was quite shy growing up, well into my twenties. Slowly, I began expressing my thoughts, as I often noted that someone would say exactly what it was I was just thinking. I had worried I would look foolish saying such things, but others comments were well-received. So I was encouraged. And as you can see, I have overcome my hesitancy to share my thoughts.

I've always cared deeply about others, sensed their pain, wanted to help. Considered being a psychologist at one point. I was counseling friends when I was in grade school. Honestly. And my Daughters were the same. I'd pass them on the phone in our kitchen, little girls, telling their friends such words of wisdom beyond their years, advising others with genuine caring and understanding, apparently assuaging their angst. Wow! Good for them, I'd think. And it always bemused me as I witnessed this. Genes I spose...

I think my Mother would be pleased with my spiritual progress in this life (open-minded as she was). I admire my Daughters' generosity of Spirit w/friends and strangers to this day. I am proud!

Don't we each wish to make our parents proud of us, even when we become grown? Instinctively, it is ingrained in our psyches. On Mother's Day I send my girls cards, expressing my pride in the fabulous job they are doing. They are obviously deeply touched by this praise coming from me. I am most sincere, and they know it. I say, and write, what I truly think. Sometimes this does not please them, gentle though I try to be. Oh dear.

I believe that as we speak and act, it would be good to keep that goal of pleasing our Moms in the back of our minds. Do the right thing, I was taught. You know what that means, my Mom would often say, trustingly.

Brenda and Jean -- you are both extraordinary ladies, perfect examples of that old saw -- surely the apple doesn't fall from the tree... I have great admiration for you both. With LOVE...
__________________
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 07-06-2009, 01:21 PM   #18
CourtneyL
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Location: San Francisco
Posts: 260
Bravo, Brenda!
__________________
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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