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Old 02-17-2009, 12:49 AM   #1
hutchibk
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Update Hucklebuck

Whew. Busy, busy, busy. OK, so what's new in central Texas? Let's see...

A quick chronological rundown: SEPT - IMRT targeted brain rads (worked phenomenally well, no sign of pesky spots), OCT - switched to Herc/Tykerb combo (suffered gasto probs and diarrhea on 5 Tykerb, so dropped to 4 daily with tri-weekly Herceptin and all is going great), NOV - caught a bad case of something that included middle ear crud and dizzies, finally cleared that around Thksgiving and ended up with a surprise case of the blues along with hangover fatigue from the brain radiation (we assume) so my doc asked me to start on Remeron (mild anti-dep). DEC - attended SABCS with the HER2Support team and had a blast, went to NYC for 4 days which turned into 6 days after being snowed in, went to Tampa for Christmas, Remeron really started to help after about 3 weeks, but caused weight gain (bummer, about 11 lbs)... but thankfully I was good as new by Christmas and New Years. JAN - traveled to Tampa for 3 weeks of my annual work at the Super Bowl. The game was fun and this year we got to go onto the field after the game. Got my pic taken with the Thunderbird Pilots... FEB - had my capsulectomy (remove scar tissue from around my implant and replace implant) surgery last week, so here I am with drainage bulb and a computer. Hope to have bulb out by this Thursday and be allowed to plug back into being a mobile human again by the weekend... and start to work off/walk off some of the new poundage that I am toting around.

Last scans (Dec) looked great! Nothing new. I love hearing that. Tumor markers are lower than they have been since original dx. Unbelievable. Next set of scans scheduled for March, and I am keeping my fingers and toes crossed.

So, that's what I've been up to. How's everyone else?

XO, Brenda
__________________
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; 02-17-2009 at 07:13 PM.. Reason: forgot to include my week at SABCS! OOPs! And all the other Dec travel...
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Old 02-17-2009, 06:11 AM   #2
mts
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I'm speechless !

Maria
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--------------
Dx'd 8/04 at 41
Stage 1 for some onc's; Stage II for others (if you add up the sizes of all tumors).
Infiltrating DCIS
HER2+, ER+10% & PR-
.9cm tumor not visible on mammo, but palpable; visible on ultrasound
Lumpectomy/ clear margins, no nodes
Had Breast MRI after lumpectomy that revealed two more tumors in same quadrant(.4cm and 1.6cm) that were not visible on either mammo or ultrasound.
Re-excision
DD AC+T; Herceptin one year
Rads
NED/Taking Tamoxifen reluctantly
--------------
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Old 02-17-2009, 06:43 AM   #3
Becky
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Me too but overjoyed you are well and getting stronger.

You go warrior woman!
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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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Old 02-17-2009, 06:43 AM   #4
WomanofSteel
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Sounds like you have been a busy bee. I think a few of you ladies are having a competition to see who can cram the most into each day. Myself, I like to stop and smell the roses sometimes. I will keep my fingers and toes crossed with you and even my eyes when I can if that helps. Keep on truckin'!
__________________
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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Old 02-17-2009, 07:32 AM   #5
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
Posts: 2,999
Thumbs up

Hey Girl, what a great post to start me 'ole day. I revel in your happiness my friend and cannot wait to tell Ed. My heart is full with this news. AttaGirl!! Keep up the remarkable work!!!>>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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Old 02-17-2009, 09:24 AM   #6
karenann
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Happy to hear your good news.

Karen
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Old 02-17-2009, 09:27 AM   #7
Shobha
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Thrilled to hear your good news! It gives us all so much hope!

love,
shobha
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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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Old 02-17-2009, 09:33 AM   #8
vickie h
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Brenda,
New hope.. for a new day. Your post brings us all added joy. Good for you! 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 02-17-2009, 09:41 AM   #9
sarah
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bravo brenda!!! you needed that! congrats
hugs and love sarah
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Old 02-17-2009, 09:50 AM   #10
schoolteacher
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Brenda,

Glad to hear your good news.

Amelia
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Old 02-17-2009, 10:10 AM   #11
Julie2
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Very happy to hear the good news!

Julie
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Diagnosed in Sept 2004 while pregnant with the second child. Stage 3b, tumor 4.5cm, 4 auxillary and supraclav node positive. Her2+++ FISH 9.4 and er-,pr-.
Had dose dense neoadjuvant AC,Taxol then mastectomy,radiation+xeloda+Herceptin.
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Old 02-17-2009, 10:15 AM   #12
Ceesun
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Brenda, this is terrrific, your vigor and zest amazes and inspires me. Ceesun
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Old 02-17-2009, 11:33 AM   #13
AlaskaAngel
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Glad to hear from you

Fingers crossed for you here too, Brenda. I don't see ANY grass growing under your feet! Trade you some Alaska wild salmon for some of that great Texas sunshine...

A.A.
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Old 02-17-2009, 11:41 AM   #14
ElaineM
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Wink Update Hucklebuck

Wow !! You sure do keep putting one foot in front of the other !! You are one of the poster girls for that.
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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 02-17-2009, 12:31 PM   #15
naturaleigh
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To all you Ladies, especially Joy

I think she forgets sometimes, just how special she is:

One Flaw In Women

Women have strengths that amaze men.
They bear hardships and they carry burdens,
but they hold happiness, love and joy.

They smile when they want to scream.
They sing when they want to cry.
They cry when they are happy
and laugh when they are nervous.
They fight for what they believe in.
They stand up to injustice.

They don't take "no" for an answer
when they believe there is a better solution.

They go without so their family can have.
They go to the doctor with a frightened friend.




They love unconditionally.
They cry when their children excel
and cheer when their friends get awards.

They are happy when they hear about
a birth or a wedding.
Their hearts break when a friend dies.
They grieve at the loss of a family member,
yet they are strong when they
think there is no strength left.
They know that a hug and a kiss
can heal a broken heart.

Women come in all shapes, sizes and colors.

They'll drive, fly, walk, run or e-mail you
to show how much they care about you.

The heart of a woman is what
makes the world keep turning.

They bring joy, hope and love.
They have compassion and ideas.
They give moral support to their
family and friends.

Women have vital things to say
and everything to give.

HOWEVER, IF THERE IS ONE FLAW IN WOMEN,
IT IS THAT THEY FORGET THEIR WORTH.
__________________
Anita

er, pr-, Her2+++
Stage 2b, grade 3
negative nodes
4 rounds AC
3 months of weekly taxol
1 yr of Herceptin
Finish Herceptin May 2007
35 rounds of Radiation
Reconstruction completed Dec 2007
Implant replaced due to infection Mar 2008
4 Years NED!!!
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Old 02-17-2009, 12:46 PM   #16
Gerri
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Brenda,

Thanks for the update! So happy to hear that you are doing so well!!
__________________
Gerri
Dx: 11/23/05, Lumpectomy 12/12/05
Tumor 2.2 cm, Stage II, Grade 3, Sentinel Node biopsy negative
ER+ (30%) /PR+ (50%), HER2+++
AC X 4 dose dense, Taxol X 4 dose dense
Herceptin started with 2nd Taxol, given weekly until chemo done
then given every 3 weeks for one year ending on March 16, 2007
Radiation 30 treatments
Tamoxifen - 2 yrs (pre-menopausal)
May 2008 - Feb 2012 Femara
Aug 2008 - Feb 2012 Zometa every 6 months
March 2012 - Stop Femara, now Evista for bone strengthening
**********
Enjoy the little things, for one day you may look
back and realize they were the big things.
- Robert Brault
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Old 02-17-2009, 01:20 PM   #17
Mary Anne in TX
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Amazing, terrific news! Thanks a million for sharing it with us today! You've been non stop on this journey lately and the payoff is wonderful. So happy for you, Brenda. 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 02-17-2009, 01:37 PM   #18
freyja
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Good to hear things are looking so good. I understand the cabin fever. I just had my drains removed last week, now I'm buzzing around like a bee trying to catch up on everything I couldn't get done the last couple weeks...seems like months! Hope that new implant serves you well.
Celeste
__________________

"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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Old 02-17-2009, 02:19 PM   #19
MJo
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Yippee for you! There's a lot of good news on this board today. Ya know, Tykerb sounds like it really kicks a-- on the brain mets. Spring is coming.
__________________
MJO

IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
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Old 02-17-2009, 05:07 PM   #20
Joan M
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Good to have the old Brenda back.

Glad to hear that you're treatment worked really well.

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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