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Old 09-03-2009, 04:20 PM   #1
loricar3
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Unhappy Newbie to this HER2+

To All,

I was diagnosed on July 15, 2009 with HER2 positive Breast Cancer. Here are some stats:

Age: 45, mother of 2 boys, age 13 and 9, married
Size 2.5 cm left breast
Grade 3
Stage IIA
8/18 Lumpectomy with sentinal node biopsy
8/18 Clear Margins, clear nodes!!
HER2 positive, ER +, PR +

Scans for next week:
Brain CT
Bone Scan
Echocardiagram

Port placement next Thursday

Begin treatments TCH:

9/16/09 Herceptin
9/17/09 Taxotere, Carboplatin

Treatment: 6 rounds of TC every 3 weeks, Herceptin once a week until chemo is done. Thereafter Herceptin every 3 weeks until 52 weeks have passed in total.


So my fears right now?? The scans. Any information anyone can give with any of this is so appreciated.

I hope that I can be the busy mom that I am through it all!
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Old 09-03-2009, 04:28 PM   #2
Bill
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Re: Newbie to this HER2+

Hi Lori! Welcome to the site. You may already know by now that there is an abundance of knowledge and experience and love here. Please feel free to ask anything, and there is almost certain to be someone to answer who has been there and done that.
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Old 09-03-2009, 04:50 PM   #3
Bill
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Re: Newbie to this HER2+

Scans always make us nervous and fearful. It's that natural human "fear of the un-known", but if you try to shift your thinking toward the "knowledge is power" frame of mind, it can help. You're in a battle now, not of your own choosing, but it is what it is. From your post, we can tell that you are a strong, focused woman. When you awaken each morning, take a few deep breaths and tell yourself, "I am in a battle now, and I have become the Warrior. This day is mine. This time is mine. I will fight today and do the best I can today. At the end of this day, I will rest, knowing that tomorrow will take care of itself"
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Old 09-03-2009, 06:15 PM   #4
'lizbeth
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Re: Newbie to this HER2+

Loricar,

Welcome to our group. You have found a great bunch of folks to help support you. Wishing you good news with the scans. Keep us posted.

'lizbeth
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Diagnosed 2007
Stage IIb Invasive Ductal Carcinoma, Pagets, 3 of 15 positive nodes

Traditional Treatment: Mastectomy and Axillary Node Dissection followed by Taxotere, 6 treatments and 1 year of Herceptin, no radiation
Former Chemo Ninja "Takizi Zukuchiri"

Additional treatments:
GP2 vaccine, San Antonio Med Ctr
Prescriptive Exercise for Cancer Patients
ENERGY Study, UCSD La Jolla

Reconstruction: TRAM flap, partial loss, Revision

The content of my posts are meant for informational purposes only. The medical information is intended for general information only and should not be used in any way to diagnose, treat, cure, or prevent disease
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Old 09-03-2009, 06:47 PM   #5
loricar3
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Re: Newbie to this HER2+

P.S. I'm BRC1 and BRC2 NEGATIVE!! So I had great news up until the scans, and the chemo. I was sailing along happily in Stage 2A, almost Stage I. And now....SCANS, CHEMO, and WIGS oh my!! I hope to be sailing along again soon. This web site will help. Thanks for the inspiration!
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Old 09-03-2009, 07:03 PM   #6
Jackie07
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Re: Newbie to this HER2+

Welcome, Lori,

There is a User CP on the gold bar where you can edit your 'Signature'. Most members put their treatment history there. You might want to copy and paste the information on your first post to the signature area.

Another great function is the 'Search' button. You can put in keywords and search for old postings related to the topic.

Home page also has a bunch valuable information.

Are you claustrophobic? Many new machines now are equipped with a small reflection mirror through which you can see what's going on in the room. It's a big improvement from the old days.

Welcome again!
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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
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Tamoxifen B. scan
Irrtbl bowel 1'09
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Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
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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)
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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.
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Last edited by Jackie07; 09-03-2009 at 07:11 PM..
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Old 09-03-2009, 07:11 PM   #7
lexigirl
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Re: Newbie to this HER2+

HI Lori,

I am so sorry that you have been diagnoses. Sounds like you have caught the beast early (great news) and you have a tx plan in place. The scans are routine and are good for your onc to have as a baseline. Scans can make us feel very anxious. My onc gave me a rx for ativan. I would take 1mg an hour or so before a scan appt. and it helped take the edge off of my anxiousness.

Great news on your brca results! There will be ups and downs on the journey and this is a wonderful place to come with questions or fears or whatever!

Hang in there and know that you aren't alone in this.

Hugs and Prayers,
Lexi
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Old 09-03-2009, 07:15 PM   #8
Laurel
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Wink Re: Newbie to this HER2+

Loricar3,

Welcome. Scans are a bit taxing if you are the least bit claustrophobic, which if you are like me you will not discover you are until you are in the tube! I strongly suggest for the scans and MRI's, especially the brain MRI, that you close your eyes as you are slid into the apparatus and KEEP them CLOSED until they bring you out. Then it is not really so bad. You will be given head phones that play music to drown out the magnetic "thumping" and a button to push if you need to speak with the technician. That button gives you a feeling of control/escape.

As for Chemo, well it isn't a walk in the park, but look at all of us who have been through it. You will get to the other side of this disease, too. You just have to put one foot in front of the other and walk out this journey. Do not hesitate to ask us questions as you go along. We are a support group and we will have your back.

I suggest getting a quality wig. My insurance covered mine. For the most part I went bald at home and wore caps, but when I went out in public I donned the wig! No one was the wiser!

I know it was a shock to find yourself in an early stage of cancer only to be told you will be doing chemo, and in my case a mastectomy. This cancer train moves fast, but believe it or not the treatment goes by fast, too! It is one heck of a year, that's for sure, but it does end.

All the best and please stay in touch as you go along.
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Smile On!
Laurel


Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara

15 Years NED
I think I just might hang around awhile....

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Old 09-03-2009, 08:05 PM   #9
Gerri
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Re: Newbie to this HER2+

Hi Lori,

Welcome to our family. I wanted to respond to you because we have almost the same stats. My chemo was different, but the size of my tumor and the choice for lumpectomy vs. masectomy are the same - lumpectomy with radiation has almost the identical risk of recurrence as a masectomy and it is very low.

I am now almost 4 years out from my diagnosis and feel great - so far, so good....even so, I am very vigilant with my follow up care. I have had all of the tests you are anticipating. Laurel has great advice about being 'in the tube' - don't even look at it before your scan (or after) and close your eyes before going in. I am very claustrophobic and this has worked for me.

I got my port a little late in the game. Expect to be sore after the procedure. I had a lot more discomfort with my port surgery than my lumpectomy. Keep in mind that everyone is different and your experiences may be completely different from everyone elses. Listen to your body and you will do okay - rest when you need rest, let others take care of you for a change. If you try to push things you may not bounce back as quickly as you would if you take it easy when need be.

Hold on tight,this is the journey of a lifetime. You will make it through okay, you are stronger than you think.

Take good care,
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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.
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Old 09-05-2009, 09:25 AM   #10
caya
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Re: Newbie to this HER2+

Hi Lori,

Sorry you had to join our club, but you will find much comfort, advice and knowledge here.

The scans - ditto on keeping your eyes closed, I also took 1 mg. of ativan about 1/2 hour before my brain scan.

You are triple +, like me, a small subsect of the Her2+ population. The prognosis rates are excellent for us, you are early stage, no nodes, and between Herceptin and the hormonal blockers, you will do well. Do not be a hero, you will need rest. Ask your family and friends for help, they will be more than happy to help out with your kids, drop off a casserole etc.

I am nearly 3 years out - chemo is doable, Herceptin on its own a walk in the park in comparison. My hair grew back straighter (most grows back curly), and less gray!!
I am down to 2x/year onc. visits, feeling pretty good.

Keep us posted.

all the best
caya
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ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08

Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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Old 09-05-2009, 09:29 AM   #11
hutchibk
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Re: Newbie to this HER2+

Hi Lori - our well experienced thoughts are with you... I am guessing that if your nodes are clear, then you have a better than pretty good shot at scans being clear.
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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 09-06-2009, 06:15 AM   #12
Ruth
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Re: Newbie to this HER2+

Welcome to the board although I hate the way you get to meet these great people!
I'm also from GA...poor Dawgs didn't quite make it last night.
Good luck with the scans...if you can close your eyes during most of them I think that helps. Xanax or ativan if you hate small places.
Please always feel free to ask any questions and we all would be happy to answer.
Hugs ~ Ruth
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[/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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Old 09-07-2009, 07:47 AM   #13
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Re: Newbie to this HER2+

sorry you have to be here but you found a really great place. these people here are wonderful. i only wish i'd known about them when first diagnosed 5 yrs ago.
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st 1, gr 3, er,pr-, her2 +,
2 tac,33 rads,6 cmf
1 yr herceptin,
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Old 09-07-2009, 10:18 AM   #14
loricar3
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Re: Newbie to this HER2+

To everyone,

Also, many asked here if I am claustraphobic. Well, I'm not. But I'll still close my eyes and try to channel other non scan/breast cancer thoughts. Thanks for all the good advice and information!
__________________
Lori, age 45, married mother of 2 boys
age 13 and 9
Diagnosed 7/15/09
Infiltrating Ductal Carcinoma
ER+, PR+, HER2+
2.5 Tumor
Grade 3
Stage 2A
BRC1/BRC2 NEGATIVE
8/18 Lumpectomy
8/18 Sentinal Node Biopsy
clear nodes
clear margins
9/16/09 TCH Treatment
Taxotere, Carboplatin, Herceptin
Every 3 weeks for 18 weeks total
Herceptin every week until 18 weeks
then every 3 weeks until 52 weeks are done
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Old 09-10-2009, 03:51 PM   #15
loricar3
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Re: Newbie to this HER2+

Hi everyone,

My port was placed today. I'm uncomfortable but I'll get there. Had all my scans done yesterday and also the echocardiagram. The doctor who put my port in was also the doctor that read the CAT scan result. So, before the port I asked him to read it "Now", and he did! (I was so BOLD) No cancer on the CAT which scanned a bunch of me--brain, liver, lungs, pancreas, you name it. So now I'm just waiting for the bone scan and echocardiagram results.

I'm so blessed for that clean CAT scan!

Also, I picked out a gorgeous human hair wig on Tuesday and I'll be stunning!! I'll get that wig on Tuesday, September 29th.

I also signed up for look good, feel good and something called Chemoflauge here in Atlanta. Has anyone been to it?

God Bless everyone!
__________________
Lori, age 45, married mother of 2 boys
age 13 and 9
Diagnosed 7/15/09
Infiltrating Ductal Carcinoma
ER+, PR+, HER2+
2.5 Tumor
Grade 3
Stage 2A
BRC1/BRC2 NEGATIVE
8/18 Lumpectomy
8/18 Sentinal Node Biopsy
clear nodes
clear margins
9/16/09 TCH Treatment
Taxotere, Carboplatin, Herceptin
Every 3 weeks for 18 weeks total
Herceptin every week until 18 weeks
then every 3 weeks until 52 weeks are done
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Old 09-10-2009, 05:30 PM   #16
Becky
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Re: Newbie to this HER2+

You'll do great! You've already got the "BOLD" part down pat. We are here for you.
__________________
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 09-10-2009, 06:44 PM   #17
Sheila
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Re: Newbie to this HER2+

Lori
Welcome to our group.....never be afraid to ask anything....we have all traveled the road at a different time.
Glad the scans were clean...and the new hair is ready to go....its no cake walk, but we have all gone through it and come out stronger with a new outlook....you will do fine....if you have problems, ask away, someone is always an email away, to ease this journey for you....truthfully, the fear of what we dont know or what to expect is the worse!
Sending a big hug...we are here for you!
__________________
"Be kinder than necessary, for everyone you meet
is fighting some kind of battle."



Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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Old 09-11-2009, 07:22 AM   #18
Diane H
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Re: Newbie to this HER2+

Hi Lori, glad to hear you are through the initial stage and that you got some good news with your scans. You sound like one strong lady and know you will handle chemo fine. Remember to be good to yourself, it's your time to accept help whenever it is offered to you, and to ask if it ain't.
Sending you hugs,
Diane
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Old 09-11-2009, 10:45 AM   #19
whatz
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Smile Re: Newbie to this HER2+

I assume you refer to the "Look Good Feel Good" from the ACS (american cancer society). If so, I've been to it and it was a lot of fun. We got a big bag of nice make-up and a lot of make-up tips and tricks with demo. I was not a big make-up person prior to my diagnosis but even I have learned how to pencil in somewhat matching eybrows :-) and get some color on my eyes to make up for sparse eye-lashes. Our workshop also had some free wigs to try on and I came out with a strawberry-blond one (I'm naturally a dark brunette and figured: heck, why not have fun with it :-) )
Loosing your hair has some benefits to it too. Really cuts down on the time for getting ready, step in the shower, step out of the shower, put on scarf and hat and voila, "the hair is fixed" :-)
__________________
4/09 suspicious lump in left breast
5/09 biopsi lead to diagnosis ER/PR -
Her2+.Grade 3,full masectomy left breast,sentinel nodes clear,Stage 1
6/09 Adriamycin + Cytoxan 4 treatments (every 3 weeks) followed by Taxol + Herceptin, 1 treatment weekly for 12 weeks, followed by Herceptin for 40 weeks
MRI Brain 4/10 clear
CT Body 4/10 clear
PET Body 2/11 clear
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Old 09-11-2009, 12:24 PM   #20
loricar3
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Re: Newbie to this HER2+

Hi everyone,

Yes, I mean the ACS Look Good Feel Good Session and I'm looking forward to it. The Chemoflage is provided by someone else here in Atlanta at the Perimeter Mall at Nordstrom. I really like makeup so this will work well for me. Eyebrows, I'm hoping to learn how to create them if I need to. Lashes too. Hair, well, wigs work or hats with hair or scarfs and so many choices. No more bad hair days. My hairdresser gave me a free wash and cut today on my real hair as I can't wash it with the new port right now. That was so kind of her.
__________________
Lori, age 45, married mother of 2 boys
age 13 and 9
Diagnosed 7/15/09
Infiltrating Ductal Carcinoma
ER+, PR+, HER2+
2.5 Tumor
Grade 3
Stage 2A
BRC1/BRC2 NEGATIVE
8/18 Lumpectomy
8/18 Sentinal Node Biopsy
clear nodes
clear margins
9/16/09 TCH Treatment
Taxotere, Carboplatin, Herceptin
Every 3 weeks for 18 weeks total
Herceptin every week until 18 weeks
then every 3 weeks until 52 weeks are done
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