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09-22-2012, 06:00 PM
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#21
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Senior Member
Join Date: Apr 2011
Location: Port Hedland, Australia
Posts: 382
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Re: HER2 Incidence by Geographical Location
Rhonda I have asked my onc for link to the article about Sudan etc he couldn't find it on his work computer but had the link at home from writing an article which used the data. I am hoing he gets back to me with the link this week and then I will post it for you.
Thank you for all you are doing
Jenny
__________________
Diagnosed Nov '10 IDC whilst pregnant with 2nd child
Her 2 ++ ER/PR + but weak and patchy 50% + 5%
Left mastectomy Dec '10, 6cm tumour 1 of 2 lymph (micro mets)
Clear margins but lymphovasculer invasion
Stage 3a Grade 3
Fec 100 x 3 Jan '11 Taxotere X 3 and Herceptin X 1yr
Staging scans - CT brain & body and bone - May '11 - NED!!
Start Femara - in chemo induced menapause
25 Rads June '11
Dec '11 Menstruation resumed - zoladex inj monthly and Tamoxifen
Feb '12 Back on Femera and Zoladex
March '12 CT brain & body & bone scan all clear
Zometa x2/yearly
April '12 - Oopherectomy
Praying the Herceptin is as good as its hype!!
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09-22-2012, 10:56 PM
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#22
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Senior Member
Join Date: Mar 2012
Location: Alabama
Posts: 121
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Re: HER2 Incidence by Geographical Location
I was unable to check the hormone recep questions. Im ER/PR - andvim in Alabama
__________________
Vicki
Lord, give me the comfort of Your embrace and acceptance of Your will.
3/11: DX: IDC, HER2++, ER/PR neg, stage 4, mets to liver. Primary tumor: grade 3; 11 cm. 2nd smaller tumor: ~2.5cm. Multiple affected nodes, 1 spot on liver. 6 rounds TCH prior to bmx.
7/11: Nothing left except Primary breast tumor now 1.5cm.
8/11: BMX, 17/17 nodes clear. No post-op chemo or radiation indicated. NED!
10/11: NED! Continue Herceptin indef.
2/12: Reoccurence of liver mets; both lobes. Tykerb added to Herceptin.
5/12: Progression of liver mets. Stop Tykerb, start Abraxane & Herceptin weekly.
8/12: Progression in liver and lymph nodes around liver and right kidney. Herceptin not working anymore! Stop Abraxane and Herceptin. Start Tykerb and Xeloda.
10/12: Severe side effects. 3 weeks break from everything.
12/12: It's working! All tumors gone except 2 (from 20+) Continue Tykerb and Xeloda. Brain and spine MRIs clear.
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09-23-2012, 08:55 AM
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#23
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Senior Member
Join Date: Jun 2011
Location: Somerset, NJ
Posts: 487
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Re: HER2 Incidence by Geographical Location
Jenny, you're a sweetheart. And who knows? If we get this information, we might be able to figure out just where to look for similar information.
Vicki, I have no idea why the survey wouldn't take the hormone receptor information from you, but I did add it to the results, so it's all good. It was probably just a blip on the site that prevented it, so if we're lucky, it won't happen to anyone else.
To all, we're now up to 74 responses.  Now that we're on page two, I'll add links here as well.
The survey:
http://www.surveymonkey.com/s/YJ27JNQ
The results:
https://www.dropbox.com/s/bmjt4nq4cz...%20Survey.docx
The graphic I uploaded on page one is now obsolete, so I've deleted it.
__________________
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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09-23-2012, 12:10 PM
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#24
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Re: HER2 Incidence by Geographical Location
I just did your survey but I wrote the city I lived in when diagnosed and not the city I live in now - I believe this is relevant.
It did not ask Her2
__________________
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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09-23-2012, 02:14 PM
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#25
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Senior Member
Join Date: Jun 2011
Location: Somerset, NJ
Posts: 487
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Re: HER2 Incidence by Geographical Location
From the bottom up...
...the assumption is that the only folks completing the survey are HER2+. The original question that started this was just about geographical location, but I threw in hormone receptor status as a bonus question (so to speak).
As for geographical location...you have hit on the big weakness of the survey. I think we've had some discussion about this, either earlier in this thread or in the thread where the question was first discussed. My hope is that everyone will do as you have done, because that's what the survey should've asked for.
Live and learn. Next survey will be perfect.
__________________
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
Last edited by rhondalea; 09-23-2012 at 02:16 PM..
Reason: coherence
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09-28-2012, 09:58 PM
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#26
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Senior Member
Join Date: Mar 2012
Location: New York, new york
Posts: 73
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Re: HER2 Incidence by Geographical Location
Just completed...
__________________
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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10-01-2012, 05:51 PM
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#27
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Senior Member
Join Date: Sep 2005
Location: Ontario, Canada
Posts: 752
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Re: HER2 Incidence by Geographical Location
Rhonda;
I think this is a very interesting survey though not likely to address my concerns. My little town of less than 5000 people and the area surrounding which runs along the St. Lawrence River seems to have a very high incidence of cancers. For instance, when I was having treatment I knew of 3 other women who had inflammatory breast cancer and were in treatment in my town. I doubt there are many on the site but I hear regularly of new cases of various types of cancer in the young and old in my area.
Cathy
__________________
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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10-01-2012, 06:37 PM
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#28
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Senior Member
Join Date: Jun 2011
Location: Somerset, NJ
Posts: 487
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Re: HER2 Incidence by Geographical Location
Hi Cathy,
I don't know if you've seen this, but you may find it useful:
http://statecancerprofiles.cancer.gov/
We're up to 99 responses, but I'm a couple or three responses behind. |
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10-24-2012, 12:00 AM
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#29
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Senior Member
Join Date: Apr 2011
Location: Michigan
Posts: 1,173
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Re: HER2 Incidence by Geographical Location
Just thought I would give this another bump up. Thanks again Rhonda, 100 and counting. Very interesting!
__________________
dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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10-24-2012, 03:55 AM
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#30
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Senior Member
Join Date: Oct 2012
Posts: 645
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Re: HER2 Incidence by Geographical Location
added my info
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10-24-2012, 06:15 AM
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#31
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Senior Member
Join Date: Jun 2011
Location: Somerset, NJ
Posts: 487
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Re: HER2 Incidence by Geographical Location
We're up to 113, actually, and I've discovered the defect in this idea--more than 100 responses requires a paid subscription.
I don't really want to subscribe to SurveyMonkey for a year, because I'm not going to use the subscription (unless...see below). I can use a monthly subscription to get the results, but then I'll need to terminate the survey when the month is over, so I don't want to do it right away.
If we decide that we want to do more surveys (for which we'll need ideas), then the annual subscription makes sense, and I'm happy to do it. Before doing that, though, I have to figure out who to ask for permission--something I should've done for this one, but it never occurred to me to read the TOS first (leaving me the need to ask both forgiveness and permission). If this is the only survey, then we'll need to pick a termination date, and I'll wrap it up. (There's no rush--the data's not going away, and I'd like those who don't log in often to have a chance to respond.)
Suggestions welcome.
__________________
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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