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Old 06-12-2009, 07:43 PM   #1
Cannon
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Posts: 203
Lisajean,

Welcome to the club no one wants to join. I'm so glad you found us -- this is the happening place for her2+. The people here have so much information and inspiration!

I had a similar presentation as you - multifocal, with largest 5 cm, and three positive nodes. You'll see my treatment below. I am glad to say, it's almost three years since my diagnosis. We have MANY long time survivors here, they are amazing.

No thoughts on the chest pain, except to agree about a 2nd opinion, any time you are not comfortable with the one you've got. I must say, my oncologist often told me that he was not worried about various things -- when I was -- and I trust him enough to be my guide.

It's a tough fight, and feeling bad is (often) part of the process -- you will get through it!

Rebecca
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Dx 8/06 Age 43 Stage IIIA multifocal throughout breast, largest tumor 5 cm, grade 3, comedo, ER+PR+HER+++
Neoadjuvant A/C 4X Dose Dense
11/06 Bilateral Mastectomy (no choice on the right, my choice on the left)
Taxol+Herceptin weekly x12, continuing with Herceptin, finished one year in 12/07
33 Rads
Femara for 5+ years, staying on (started with Arimidex, switched after about a month, much happier)
Abnormal brain MRI shows no cancer, but "extensive white matter diease" - unknown cause
BRCA negative - lots of cancer in my family
survivor of thyroid cancer
also have Crohn's disease
CT and bone scan say NED as of 5/13
dx with severe cardiomyopathy 5/12 (likely due to chemo and Herceptin), ejection fraction in low 20's, now up to 40, went to 50, latest read 12/13 is back down to 35
1/13 Acute pancreatitis - are you kidding me?
9/13 started Humira for Crohn's. starting to have some energy again
B12 and Vit D both needed supplementation
Cataracts in both eyes noted 6/12 - surgery in the next 2-4 years?
4/14 Kidney stones/blockage/infection - related to Crohn's Disease
5/14 My aunt passed away - she was diagnosed after I was with Stage I - not Her2+, then Stage 4 for about one year
6/14 Scans - still NED, thank God. However, broken rib (I didn't notice) lots of bone degeneration osteopenia/osteoporosis. I also still have cardiomyopathy secondary to chemo.
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Old 06-12-2009, 07:51 PM   #2
Sheila
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Location: Morris, IL
Posts: 3,507
LisaJean
Welcome to our group...i can only echo what others have said about getting the baseline MUGA or Echo....it is probably nothing, but better to have it checked....you will find a wealth of information, encouragement and genuine care and concern here....you have come to the best website to help with this disease!!!
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"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 06-14-2009, 11:09 AM   #3
Jean
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Location: New Jersey
Posts: 3,154
Hi LisaJean,
Welcome...I just wanted to add my good wishes for the treatment to go smoothly for you. Before you know it you will be done with the difficult portion of TC..the herceptin treatment is much easier.

If your team did not order a muga scan prior to treatment, ask why not? and then ask to have one.

Best Wishes,
Jean
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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

Last edited by Jean; 06-14-2009 at 09:30 PM..
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Old 06-14-2009, 06:34 PM   #4
Lisajean
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Posts: 5
Hello and Thank You!

Thank you so much to all of you for your replies. I am so grateful to have found this group!

I did have a baseline echocardiogram. The first I have heard of the mugga test was here. Should I have this done? My onc is not very responsive - in my opinion and seems completely unconcerned about my complaints. I just had a meeting with him this week and he did not even know how many chemo rounds I had at this point. I have had four, he thought I had only had two - even argued with me about it saying "No, you're thinking of the Herceptin treatments" and started to explain to me what the chemo days are like. It was pretty discouraging to realize he had not even reviewed my case before our meeting.

Anyway, I have kind of given up on him as being invested in my care. So, my plan is to work through my primary care doctor and get a referral to a cardiologist and go from there.

Thank you so much for all of your encouragement and support. I am so grateful to have you found all of you!
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