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Old 01-02-2008, 08:06 PM   #1
Lani
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I strongly recommend all go to www.sabcs.org and

hot 5 then on day 3 symposium.

You will get to watch C Kenneth Osbourne of Baylor discuss the research he has done with Rachel Schiff (one of the people I spoke with about the proposal of starting a tumor registry) which includes that favorite article about curing her2+ bc in mice with herceptin+pertuzumab+ Iressa combo.

The some of the words he uses may be a bit long (phosphorylation, tyrosine kinase) , but the slides are well illustrated and he speaks clearly.
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Old 01-02-2008, 08:12 PM   #2
Lani
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forgot one step

first click on hot 5, then presentations, then day 3 then symposium4.

Hope this helps
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Old 01-02-2008, 10:05 PM   #3
Cathya
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Lani;

Thank you for the suggestion. I watched this and it is excellent. Two things struck me rightly or wrongly. As a her2++ vs very strongly her2+++, I wondered if it would not be likely that Her2, 3 or 4 would be playing a more active role in my cancer than someone strongly her2+ who could even be bonding with another her2. I also wonder if it is possible eventually for those who are originally diagnosed er- to have estrogen become a more active player. I also wonder why everyone isn't receiving herceptin, lapatinib and an estrogen blocker from the getgo.....obviously the estrogen blocker doesn't seem necessary for those er- but I do wonder.

Cathy
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Cathy

Diagnosed Oct. 2004 3 cm ductal, lumpectomy Nov. 2004
Diagnosed Jan. 2005 tumor in supraclavicular node
Stage 3c, Grade 3, ER/PR+, Her2++
4 AC, 4 Taxol, Radiation, Arimidex, Actonel
Herceptin for 9 months until Muga dropped and heart enlarged
Restarting herceptin weekly after 4 months off
Stopped herceptin after four weekly treatments....score dropped to 41
Finished 6 years Arimidex
May 2015 diagnosed with ovarian cancer
Stage 1C
started 6 treatments of carboplatin/taxol
Genetic testing show BRCA1 VUS
Nice! My hair came back really curly. Hope it lasts lol. Well it didn't but I liked it so I'm now a perm lady
29 March 2018 Lung biopsy following chest CT showing tumours in pleura of left lung, waiting for results to the question bc or ovarian
April 20, 2018 BC mets confirmed, ER/PR+ now Her2-
Questions about the possibility of ovarian spread and mets to bones so will be tested and monitored for these.
To begin new drug Palbociclib (Ibrance) along with Letrozole May, 2018.
Genetic testing of ovarian tumour and this new lung met will take months.
To see geneticist to be retested for BRCA this week....still BRCA VUS
CA125 has declined from 359 to 12 as of Aug.23/18


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Old 01-02-2008, 10:06 PM   #4
Cathya
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Ooops.....I mean in my comments....if her1, 3 and 4 .....sorry.

Cathy
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Cathy

Diagnosed Oct. 2004 3 cm ductal, lumpectomy Nov. 2004
Diagnosed Jan. 2005 tumor in supraclavicular node
Stage 3c, Grade 3, ER/PR+, Her2++
4 AC, 4 Taxol, Radiation, Arimidex, Actonel
Herceptin for 9 months until Muga dropped and heart enlarged
Restarting herceptin weekly after 4 months off
Stopped herceptin after four weekly treatments....score dropped to 41
Finished 6 years Arimidex
May 2015 diagnosed with ovarian cancer
Stage 1C
started 6 treatments of carboplatin/taxol
Genetic testing show BRCA1 VUS
Nice! My hair came back really curly. Hope it lasts lol. Well it didn't but I liked it so I'm now a perm lady
29 March 2018 Lung biopsy following chest CT showing tumours in pleura of left lung, waiting for results to the question bc or ovarian
April 20, 2018 BC mets confirmed, ER/PR+ now Her2-
Questions about the possibility of ovarian spread and mets to bones so will be tested and monitored for these.
To begin new drug Palbociclib (Ibrance) along with Letrozole May, 2018.
Genetic testing of ovarian tumour and this new lung met will take months.
To see geneticist to be retested for BRCA this week....still BRCA VUS
CA125 has declined from 359 to 12 as of Aug.23/18


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Old 01-02-2008, 10:12 PM   #5
lilyecuadorian
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thanks Lani , it was more easy to understand ..Dr Osbourne left me more excited and with more hope I really have faith w/this cocktail when we can start this ? what we can do to help ourself !!!
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Lily
Diag April/06 5 months after give birth my son Max
stage IV mets on liver (5 tumors) 38 year old,
her2+++ and ER+PR+ from32 nodes 4 positives
mastectomy right breast chemo before surgery herceptin/carboplatin/taxotere ,clear and surgery have radiation 20, `& then herceptin and tamoxifen
NED until Aug/07 body only then 'n June 04-06-07 .1 lesion of 1.6 cm on cerebellum ...novalis ,open sugery
5m.m brain met again novalis, 4mm.In the liver. Waiting 2 months now 3 tumors enroll on T-MCC trial start first infusion Nov 5/07 at Dec 17 scan show one tumor despair the 2nd and 3th diminish Doc said great results until March/08 ct scan show progression
03-05-08 start tykerb & xeloda
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Old 01-03-2008, 06:18 AM   #6
Lani
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the reason everyone is not being treated with a combination

is that this is cutting edge research and it has only been tried in mice

It may end up that cancer in humans is different (and he mentions Jenny Chang, the clinician in the group is busy organizing clinical trials to determine if these findings hold up in humans), or it may be that blocking these different paths has lots of side effects in people.

Dr Osbourne has told me when I asked a question, that not every her2+ER+ cell line implanted in mice was cured with the three drug combo or the three drug combo plus tamoxifen or estrogen deprivation, so , always, there may be other factors acting (IGFR, etc)

They are only starting to look back at the HERA and No American herceptin trials and characterize who had which her family members positive, compared to how patients did.

It may end up that different peoples' cancers are so different that every person needs to have a microgene array done on their tumor (or circulating tumor cell) and to have a different cocktail prescribed to them than to their
neighbor in the next chair at the infusion center who has the same ER,PR and her2 status.

And yes, it is possible for ER- to turn to ER+ and vice versa when comparing primary tumors to metastases according to the papers I have read. (also her2- to her2+, but almost never her2+ to her2-)
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Old 01-03-2008, 07:10 AM   #7
Cathya
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Lani;

Exactly what test should one have done to get a total genetic picture of their tumor? Living in Canada it is not easy to get genetic testing done (and very expensive) so while I am interested I would like to be sure I am asking for the right test.

Thanks,

Cathy
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Cathy

Diagnosed Oct. 2004 3 cm ductal, lumpectomy Nov. 2004
Diagnosed Jan. 2005 tumor in supraclavicular node
Stage 3c, Grade 3, ER/PR+, Her2++
4 AC, 4 Taxol, Radiation, Arimidex, Actonel
Herceptin for 9 months until Muga dropped and heart enlarged
Restarting herceptin weekly after 4 months off
Stopped herceptin after four weekly treatments....score dropped to 41
Finished 6 years Arimidex
May 2015 diagnosed with ovarian cancer
Stage 1C
started 6 treatments of carboplatin/taxol
Genetic testing show BRCA1 VUS
Nice! My hair came back really curly. Hope it lasts lol. Well it didn't but I liked it so I'm now a perm lady
29 March 2018 Lung biopsy following chest CT showing tumours in pleura of left lung, waiting for results to the question bc or ovarian
April 20, 2018 BC mets confirmed, ER/PR+ now Her2-
Questions about the possibility of ovarian spread and mets to bones so will be tested and monitored for these.
To begin new drug Palbociclib (Ibrance) along with Letrozole May, 2018.
Genetic testing of ovarian tumour and this new lung met will take months.
To see geneticist to be retested for BRCA this week....still BRCA VUS
CA125 has declined from 359 to 12 as of Aug.23/18


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Old 01-03-2008, 11:50 AM   #8
Lani
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the test as of now is not commercially available

a variation of it, the 70 gene Mammaprint, developed by a team in the Netherlands, is, but I am not sure if they will provide you with the actual info from the 1000s of genes studied on the microgene array and it can only be run on fresh frozen tissue taken at the time of surgery. A team at MD Anderson is also trying to offer a test which will document the relevant genes in all types of breast cancer for treatment decisions, but it is not yet commercially available.

I try to post interesting, helpful and/or hopeful items that I hear at meetings and that I read--some things are immediately available (eg Boswellia serrata) others are cutting edge findings from research many of which are not yet available and certainly are not "standard of care" everywhere.

Unfortunately when we talk about personalized treatment of cancer, we are not there yet. But we might speed things up if we keep informed and push our government to fund cancer research.
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Old 01-04-2008, 05:32 PM   #9
eric
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Sorry but I don't see Hot 5. Any other direction?
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Old 01-04-2008, 07:10 PM   #10
alw
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Try this:

http://209.196.53.174/2007/hot5/vide...PlayerType=icc

Then "Presentations" (on the left)
Then "Day 3"
Then "Minisymposium 4"
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Amy age 37 at dx
Feb 2008 Multifocal DCIS
Apr 2008 Bilateral Mastectomies

Sister to Laura age 37 at dx
April 2006
9 cm ER-/PR- Her2 +++/bone mets
neoadjuvant TCH plus Zometa
November 2006
bilateral mastectomy - Change to ER+/PR- Her2 +++
January 2007
innumerable tiny brain mets - WBR
March 2007
good response to WBR - some gone, all smaller
currently on Lapatinib and Xeloda
Feb 2008
Brain MRI: brain mets went from innumerable (jan '07) to 5 (june '07) to 3 (oct '07) to 1 that is getting less conspicuous(feb '08) PET/CT: Slight uptake in some sclerotic bone mets
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Old 01-04-2008, 11:31 PM   #11
eric
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Thank you Amy. Good piece and it really helped me understand things more clearly
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Old 01-05-2008, 06:37 AM   #12
hutchibk
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I sat in his talk in person (w/Chrissy) and it really blew me away. I am so very encouraged by the pace at which they seem to be unraveling the HER 1,2,3,4 network and the Pten and Tyrosine kinase aspects. I am very encouraged. Hurry Dr Osborne!
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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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