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Old 12-07-2012, 07:28 PM   #1
Lani
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Sabcs 2012

They are all singing the praises of Pertuzumab and TDM-1 and predicting the latter will be approved during the next 2-3 months.

Dr Slamon declared her2 + breast cancer has gone from being one of the worst to one of the best types to have.

Lots of options of chemos to add to herceptin including Navelbine and Halaven(erbulin), mtor inhibitors too.

30% of talks on her2+ breast cancer.

Too much info to digest yet. Amount of info is dizzying-- have to rest before posting.

Great results for perjeta and TDM1.

Fabulous lecture by Dr. Yosef Yarden who worked with Dr Ulrich developing herceptin and has theorized a two hit theory of the development of her2+ breast cancer --first hit is her2, second is p53 directly or indirectly.

Explans why so many her2+ tumors
have adjacent DCIS, why there is more her2+ DICS than IDC.

Spoke with someone who has started a tissue and blood bank that I think it would be good to donate to for those whose tumors are at community hospitals (and will be disposed of anyway after 5 years ) .

Things are hopping-- more options becoming available.
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Old 12-07-2012, 07:30 PM   #2
Emy
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Re: Sabcs 2012

Great news!!!
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Eileen's history her2+, er+,pr-, Pk13 mutation
Feb 2017. Herceptin and perjeta ..still ned
Oct 2015 dendritic cell vaccine university of Pennsylvania..6 weekly injections...boosters every 3 months
July 2015 stopped weekly taxol (2.5 years of weekly taxol) still on herceptin perjeta every 3 weeks..still ned
Jun 2014 liver ablation of 1 liver tumor..now ned
Jun 28, 2013 ca15-3 24, cea 3.8... Pet scan showed 2 liver tumors with intensity of 2.7 and 2.5 (11/13 intensity was 8.0)
Jan 2013 herceptin, perjeta every 3weeks, taxol weekly
Jan 2013 MRI showed 3 liver tumors doubled in size ca-15 is 55 end of month 71, cea 7
Dec 2012. Pet scan showed single liver nodule, having MRI liver on dec18th...MRI liver 3tumors... on herceptin, tykerb , fulvestrant ca-15-3 is 42
Sept 2012 ca-15 went from 85 to 35, pet scan showed decrease
May 2012 herceptin every 3 weeks, 1500 tykerb daily (6pills) and fulvestrant every 3 wks
May 2012 herceptin stopped working ca-15 is 85
Sept 2011 started herceptin every 3 wks and femara daily..mets to liver. Bone and lymph nodes
2011 liver mets...all samples from 2001 and 2010 reviewed...her2 positive, fish 5.4. Er positive, prog neg. Stage 4 breast ca...never was lung cancer
2010 16 weeks of chemotherapy for lung cancer (incorrect). Carboplatin and vinalbine...was actually breast ca mets
2010 misdiagnosed with lung cancer ..2cm tumor removed..lower right lobe removed
2001-2006 tamoxifen
2001. Ductal ca. Rt mastectomy
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Old 12-07-2012, 09:31 PM   #3
Cure4Cat
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Re: Sabcs 2012

Lani,

I hope you know how much we all appreciate what you do. The information that you post is extremely helpful. I just wanted to say thank you, thank you, thank you!!

Sincerely,
Catherine
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Dx Her2+, ER+, PR-, stage 2b/3 July 2010
Chemo Sept-Dec 2010
(Pertuzumab during last 3 rounds of chemo)
Surgery Jan 2011
25 Rads March 2011
Herceptin started during chemo and continued every 3 weeks for 1 year
Started Tamoxifen for 5 years

Looking for a vaccine trial
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Old 12-08-2012, 12:42 AM   #4
bejuce
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Re: Sabcs 2012

Thank you so much Lani!!! Not sure I understood your comment on DCIS... I had quite a large area of it together with the IDC. What did the researchers say about that?
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ER+ (30%)/PR-/HER-2+, stage 3

Diagnosed on 02/18/09 at 38 with a huge 12x10 cm tumor, after a 6 month delay. Told I was too young and had no risk factors. Found swollen node during breastfeeding.
March-August 09: neo-adjuvant chemo, part of a trial at Stanford (4 DD A/C, 4 Taxotere with daily Tykerb), loading dose of Herceptin
08/12/09 - bye bye boobies (bilateral mastectomy)
08/24/09 - path report shows 100 % success in breast tissue (no cancer there, yay!), 98 % success in lymphatic invasion, and even though 11/13 nodes were still positive, > 95 % of the tumor in them was killed. Hoping for the best!
September-October 09: rads with daily Xeloda
02/25/10 - Cholecystectomy
05/27/10 - Bone scan clear
06/14/10 - CT scan clear, ovarian cyst found
07/27/10 - Done with Herceptin!
02/15/11 - MVA-BN HER-2 vaccine trial
03/15/11 - First CA 15-3: 12.7 and normal, yay!
10/01/11 - Bone scan and CT scan clear, fatty liver found
now on Tamoxifen and Aspirin


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Old 12-08-2012, 04:07 AM   #5
Ellie F
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Re: Sabcs 2012

Thanks Lani
I guess your there incognito!
Like Bejuce I also had large areas of DCIS. Any explanation would be appreciated when you have time.
Ellie
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Old 12-08-2012, 04:16 AM   #6
michka
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Re: Sabcs 2012

Thanks Lani.
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08.2006 3 cm IDC Stage 2-3, HER2 3+ ER+90% PR 20%
FEC, Taxol+ Herceptin, Mastectomy, Radiation, Herceptin 1 year followed by Tykerb 1 year,Aromasin /Faslodex

12.2010 Mets to liver,Herceptin+Tykerb
03.2011 Liver resection ER+70% PR-
04.2011 Herceptin+Navelbine+750mg Tykerb
06.2011 Liver ned, Met to sternum. Added Zometa 09.2011 Cyberknife for sternum
11.2011 Pet clear. Stop Navelbine, continuing on Hercpetin+Tykerb+Aromasin
02.2012 Mets to lungs, nodes, liver
04.2012 TDM1, Ned in 07.2012
04.2015 Stop TDM1/Kadcyla, still Ned, liver problems
04.2016 Liver mets. Back on Kadcyla
08.2016 Kadcyla stopped working. mets to liver lungs bones
09.2016 Biopsy to liver. no more HER2, still ER+
09.2016 CMF Afinitor/Aromasin/ Xgeva.Met to eye muscle Cyberknife
01.2017 Gemzar/Carboplatin/ Ibrance/Faslodex then Taxotere
02.2017 30 micro mets to brain breathing getting worse and worse
04.2017 Liquid biopsy/CTC indicates HER2 again. Start Herceptin with Halaven
06.2017 all tumors shrunk 60% . more micro mets to brain (1mm mets) no symptoms
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Old 12-08-2012, 07:42 AM   #7
jaykay
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Re: Sabcs 2012

Lani - I know it's been said before - you are a treasure!

Thanks for all you do

Janis
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Old 12-08-2012, 11:00 AM   #8
Paty
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Re: Sabcs 2012

Thank you so much Lani. Valuable info!
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Dx. June 30th, 2006 at age 43
Lumpectomy rt breast
2.2 cm tumor, 13 nodes all negative
ER-PR+,her2+++
6 FAC
32 Rads
Dx. Lung fibrosis due to radiation
Ended 1 year herceptin in March, 2008
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Old 12-08-2012, 12:21 PM   #9
Lani
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Re: Sabcs 2012

packing up and leaving sabcs--quick answer

fabulous lecture by Dr. Yosef Yarden explained that her2 amplification is found more often in DCIS than IDC, but frequently there is adjacent her2+ DCIS with her2+ IDC as there is a "two hit" development process for her2+ breast cancer, where in her2 amplification has the effect of causing cells to accumulate within the duct (there is no canalization to make an empty duct as there is in normal development) and then a second hit affects p53 which indirectly affects the normal cell cycle check which prevents uncontrolled cell division (the "brake")

The lecture should be available online in January and I recommend everyone to listen to it.

More later
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Old 12-08-2012, 01:59 PM   #10
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Re: Sabcs 2012

Lani,

Just finishing reading through the abstracts, yep 600 pages baby!

What is the best information on the effectiveness of TDM1? and for Perjeta?

I had adjacent DCIS as well. Interesting.

Just gave consent for my tumor samples to be further studied in the ENERGY trial. Hitting 5 years and hope they haven't been tossed out.

What are some of the new ideas being considered for treatment that you found most interesting?
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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

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Old 12-08-2012, 08:50 PM   #11
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Re: Sabcs 2012

Thank you so much Lani for sharing this information, and for all our 'gang' at SABCS. I really look forward to reading your updates.
Cheers Marie
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dx Dec 2000 dcis 2.5cm clear sentinel node, ER/PR- Her-2+
lumpectomy, 6 cycles AC, 6 weeks rads
October 2007 three x 2.5cm lung mets. 8 months Taxol, started Herceptin and continue. Significant reduction in lung mets.
June 2011 3cm x 4cm liver tumour. Started Abraxane and continue with Herceptin.
November 2011. Finished with Abraxane, continue with just Herceptin. Liver tumour now reduced to 15mm x 12mm. Lung tumour now 10mm x 0.5mm
February 2012. Scans show everything stable, and brain scan clear.
July 2012. PET/CT scans show I'm in remission - no active cancer!
]Dec CT brain cllear, lungs stable, liver tumour has increased to 20mm. PET scans showed active liver met and active lung thinglet, and possible bone met.
Jan 2013 recommence Abraxane, continue with Herceptin.
June 2013 finish Cycle 6 Abraxane, continue with Herceptin. 30% reduction in liver tumour, everything stable.
December 2013. CA15-3 on rise.
February 2014. PET and CT scans show single liver tumour has increased to 35mm. No other activity.
March 2014. Planned for SBRT for liver met, but couldn't have treatment as tumour too close to bowel. Continue Herceptin.
April 2014. Surgeon advises that I am a good candidate for liver resection, so will have operation early May (after camping holiday). Tumour now 44mm x 29mm.
May 7, 2014. Two liver tumours surgically removed. Third of liver removed, and gall bladder. Am I NED?May 2014. Pathology of tumour shows it's now ER+ (95% staining).
June 2014. CA15-3 has decreased to 18 from a pre-surgery reading of 59!
June 2014. Started Femara, continue with Herceptin.
July 2014. Stop Femara due to severe Osteoporosis. Commence Tamoxifen, continue Herceptin. Waiting to hear if I can have Aclasta infusion.
August 2014. CA15-3 has decreased further to 12 - YAY!
October 2014. Aclasta infusion for Osteoporosis. November 2014, CA15-3 decreased to 11. Scans of liver all clear, something new showing up on lung, but just watching at the moment.
November 2015. Started SBRT on solitary lung met.
November 2015. Bone density scan showed very good improvement so back on Femara - yay!
December 2016. 6 treatments of SBRT radiation on lung. Seems to have had some effect.
June 2016. CA15-3 still stable and low at 9.
June 2016. Started subcutaneous Herceptin replacing infusion.
Jan 2017. LVEF dropped to 46%. Stopped Herceptin.
Feb 2017. Started ACE Inhibitor and BETA Blocker. Still off Herceptin.
Aug 2017. Two new mets - Portacaval lymph node and mediastinal lymph node.
Aug 2017. Blood tests show extremely elevated liver enzyme levels. Many tests to investigate.
Sept 2017. Portacaval lymph node blocking liver bile duct causing liver enzyme and Bilirubin problems.
Oct 2017. 8cm stent inserted into liver bile duct. Procedure caused pancreatitis, and hospitalised for 3 days. Liver enzymes improving rapidly.
Nov 2017. Commenced 4 weeks of radiation on Portacaval lymph node. 5 week break before chemo.
Jan 2018. CT scan. 11 new small liver mets, and new superclavical lymph node med.
Jan 2018. Start Kadcyla. CA15-3 426.
Apr 2018. First scans since starting Kadcyla. All tumours reducing. CA15-3 dropped to 30 from 426.
Dec 2019. Still on Kadcyla, but two small brain mets have been treated in the past month with SRS. CA15-3 stable for 12 months at 11.
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Old 12-08-2012, 10:16 PM   #12
Mandamoo
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Re: Sabcs 2012

Thank you for reporting back - very interesting! I had a very large area of DCIS and my initial assays on the tumor and lymph tissue pointed to P53 mutation in addition to the Her2 positivity. The P53 mutation was observed to a greater degree I the lymph tissue. Did he have any treatment suggestions based on this theory of a double hit?
I will have to download those abstracts!
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40 year old Mum to three gorgeous kids - son 5 and daughters 8 and 11
Wife to my wonderfully supportive husband of 17 years!
22 February 2011 - Diagnosed Early Breast Cancer IDBC Stage2b (ER/PR -ve, Her2+ve +++) - 38 years old
(L) skin sparing mastectomy with tissue expander, axilla clearance (2/14 affected) clear margins.
Fec*3, Taxotere and herceptin*2 - stopped due to secondary diagnosis

June 24 2011 Stage IV - Skin met, axilla node, multiple lung lesions

Bolero3 trial - Navelbine, Hereptin weekly, daily Everolimus/Placebo
February 2012 - July 2012 Tykerb and Xeloda - skin mets resolved, Lungs initially dramatically reduced but growing again
August 2012 (turn 40!) tykerb and herceptin (denied compassionate use of TDM1) while holidaying in Italy!
September 2012 - January 2013 TDM1 as part of the Th3resa trial - lymph nodes resolved, lungs slowly progressing.
January 2013 - herceptin, carboplatin and Perjeta (compassionate access)
April 2013 - Some progression in lungs and lymph nodes - Abraxane, Herceptin and Perjeta
July 2013 - mixed response - dramatic reduction of most lung disease, progression of smaller lung nodules and cervical and hilar nodes - ? Add avastin.
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Old 12-08-2012, 11:55 PM   #13
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Re: Sabcs 2012

I have started uploading all the posters. I'll also be uploading the slides. It'll take a couple of days because I'm as exhausted as I am happy. Wonderful time had by all.

First 30 posters here:

https://docs.google.com/folder/d/0B6...FpLTVBbWM/edit

Edited to add: I'll be moving the abstract book pdf over to Google Drive also, because it just provides better viewing than Dropbox.
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2/6/09 Core needle biopsy: negative; Mammos through 2010: no change
3/30/11 Pea-sized lump in left breast at site of prior biopsy; mammo negative, sonogram not so much
4/14/11 Core needle biopsy: negative for cancer
5/18/11 Excisional biopsy 1.2 cm tumor, LVI, positive margin; ER+60%,PR+20%,HER2/CEP17 5
6/15/11 BMX: Left DCIS & LH; Right ADH; SNB: 2/3 nodes: 1.4 cm and 1 mm; ALND L1&2: 0/10; Stage IIa, Grade 3
7/14/11 CT/Bone scans NED; MUGA 66%
7/19/11 Biweekly dd AC w/Neulasta; done 8/30/11
9/13/11 Transfusion (Hemoglobin 8.6); MUGA 64%
9/20/11 Start Taxol + Herceptin; Taxol done 12/6/2011; continue Herceptin until 9/4/2012
12/27/11 Radiation - 6 weeks; 2/27/2012 - DONE! Yayyyy!
2/29/12 Start Tamoxifen 20 mg/day; continue until 2/28/17
5/16/12 Start five-years Metformin trial
6/19/12 MUGA 61%
8/21/12 Brain MRI NED (head still hurts, brain still fogged)
9/4/12 Herceptin done!
9/6/12 Port out!
7/11/13 Aricept 5mg for cognitive impairment; increased to 10mg as of 8/23/13; back to 5mg 12/2013
5/2014 Add Namenda 7mg
9/2014 Stop Aricept and Namenda; Neuropsychological evaluation
10/24/14 Start cognitive rehabilitation therapy
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Old 12-09-2012, 12:20 AM   #14
StephN
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Re: Sabcs 2012

I also sat in on Dr. yarden's lecture, which I gave rapt attention trying to soak it in.

Funny enough, I ALSO had DCIS (small) found in the margin when my slides were re-examined at a second institution.

Maybe this ought to be a POLL.

Perhaps they have not previously paid much attention, because the treating docs figured any small bits left behind (not seen) would be taken care of by the nasty chemos.

Ready to put my head on my own pillow now!

P.S. There was no p53 analysis done on my tissue (that is in the report) in 2000 when I was diagnosed. I think that marker had been discovered, but still in research then - LANI, is that correct?
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"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.

Last edited by StephN; 12-09-2012 at 01:15 PM..
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Old 12-09-2012, 12:28 PM   #15
Lien
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Re: Sabcs 2012

I too had extensive DCIS and a small focus of IDC. My path report said: positive for P53 mutation. So I guess I fit the bill. Very interested in the presentation. Thank you for letting us know.

Jacqueline
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Old 12-09-2012, 01:25 PM   #16
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Re: Sabcs 2012

Had DCIS also. p53 was negative. Look forward to hearing more.
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Old 12-09-2012, 02:52 PM   #17
ElaineM
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Wink Re: Sabcs 2012

Thank you for posting this information for everyone.
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12 years and counting
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Old 12-09-2012, 04:38 PM   #18
vonny
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Re: Sabcs 2012

Thanks Lani but I wish I understood what you are all taking about as the info sounds as though things are looking good. Forgive me but I am not as well read as many of you on here and don't fully understand the info when it's posted.

What is DICS, IDC and p53 mutation?
Thank you
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Old 12-09-2012, 05:16 PM   #19
rhondalea
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Re: Sabcs 2012

I have often thought that it would be helpful to have a terminology/acronym list so as to avoid this type of confusion. I'll add it to my list of things to do. Or maybe we could just start a thread for it and add to it as we have time.

In the meantime, DCIS is "ductal carcinoma in situ." It is also known as "Stage 0" because the cancer cells have not yet broken out of the duct. IDC is "invasive ductal carcinoma," which is the most common type of breast cancer. P53 is "tumor protein 53," a tumor suppressor protein encoded by the TP53 gene.

It's helpful to remember that gene names do not have to make sense or be consistent (although there is currently some movement in that area). This is why HER2 is also called neu--same gene, twice-named.

Never let it be said that scientists do not have a sense of humor--"sonic hedgehog" is not the worst of the examples, but it gives you an idea that some of these guys have a juvenile streak:

http://tinman.nikunnakki.info/browser
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2/6/09 Core needle biopsy: negative; Mammos through 2010: no change
3/30/11 Pea-sized lump in left breast at site of prior biopsy; mammo negative, sonogram not so much
4/14/11 Core needle biopsy: negative for cancer
5/18/11 Excisional biopsy 1.2 cm tumor, LVI, positive margin; ER+60%,PR+20%,HER2/CEP17 5
6/15/11 BMX: Left DCIS & LH; Right ADH; SNB: 2/3 nodes: 1.4 cm and 1 mm; ALND L1&2: 0/10; Stage IIa, Grade 3
7/14/11 CT/Bone scans NED; MUGA 66%
7/19/11 Biweekly dd AC w/Neulasta; done 8/30/11
9/13/11 Transfusion (Hemoglobin 8.6); MUGA 64%
9/20/11 Start Taxol + Herceptin; Taxol done 12/6/2011; continue Herceptin until 9/4/2012
12/27/11 Radiation - 6 weeks; 2/27/2012 - DONE! Yayyyy!
2/29/12 Start Tamoxifen 20 mg/day; continue until 2/28/17
5/16/12 Start five-years Metformin trial
6/19/12 MUGA 61%
8/21/12 Brain MRI NED (head still hurts, brain still fogged)
9/4/12 Herceptin done!
9/6/12 Port out!
7/11/13 Aricept 5mg for cognitive impairment; increased to 10mg as of 8/23/13; back to 5mg 12/2013
5/2014 Add Namenda 7mg
9/2014 Stop Aricept and Namenda; Neuropsychological evaluation
10/24/14 Start cognitive rehabilitation therapy
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Old 12-09-2012, 05:27 PM   #20
Mary Jo
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Re: Sabcs 2012

Very encouraging news. Thanks for posting.
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Dx. 6/24/05 age 45 Right Breast IDC
ER/PR. Neg., - Her2+++
RB Mast. - 7/28/05 - 4 cm. tumor
Margins clear - 1 microscopic cell 1 sent. node
No Vasucular Invasion
4 DD A/C - 4 DD Taxol & Herceptin
1 full year of Herceptin received every 3 weeks
28 rads
prophylactic Mast. 3/2/06

17 Years NED

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