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10-03-2008, 06:09 AM
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#1
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Webmaster
Join Date: Feb 2005
Location: Home of the "Flying Tomato"
Carlsbad, CA
Posts: 2,036
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New Ideas Needed.
The HER2 Support Group will soon begin another round of Grant Requests. Our budgets are increasing as we continue to be a major influence with HER2 positive bc patients.
This years budget for cancer meetings alone ( ASCO, AACR, ONS, SABCS, Day of Caring, etc. ) will exceed $30,000.
Grants to our organization are called "Unrestricted Educational Grants". The process starts by our organization proposing a project which includes a budget. The Grantor reviews our request and if a Grant is awarded, the will send us a check. At that point the Grantor cannot influence the project in any way and our only obligation is to send them progress reports.
This process allows us to remain independent and unbiased.
Previous grants included:
Website renovations
Server relocation
and Spanish Translation (In process).
We need new ideas that will improve our organization to benefit our members to include in this years grant requests.
Regards
Joe
__________________
A Proud webmaster to the internet's most informed, educated, COMPASSIONATE and caring group of breast cancer survivors.
Illegitimi non carborundum
My Album
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10-03-2008, 07:28 AM
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#2
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Senior Member
Join Date: Aug 2006
Posts: 3,380
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Joe,
Some time ago, you talked about hiring a nurse or medical student to "interpret" for us some of the highly technical articles that are posted here. I think this is still a great idea, and that is my suggestion for this year.
Hopeful
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10-04-2008, 01:08 AM
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#3
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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I second Hopeful's idea. I too remember when that was brought up about adding a nurse or someone to help us with the abstracts and techical stuff...I've been looking forward to that for some time. That would be a great addition and money well spent.  Thanks Joe for always thinking of us, and all your hard work.
Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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10-04-2008, 04:27 AM
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#4
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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I'd love to see a pamphlet of the stories of some of the Her2 warriors in the waiting areas of clinics everywhere. Information, encouragement, education, and where to get help.
__________________
MA in TX.
Grateful for each and every day....
Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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10-04-2008, 05:39 AM
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#5
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Senior Member
Join Date: Sep 2005
Location: MN
Posts: 731
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Joe - I also like the suggestion of having a medical person 'interpret' some of the info for us. Mostly I want to say how grateful I am for this site, for you and all your work and commitment to this cause and to us. God bless. Pam
__________________
Pam
6/01 IBC er+ her2+stage IIIb; mastecomy
7/01 AC, taxol; radiation
2/02 tamoxifen
9/02 stage IV bone mets femara
1/03 taxotere/herceptin/aredia
6/03 herceptin, aredia & faslodex
1/04 navelbine, herceptin, aredia
2/05 herceptin/aredia
7/05 xeloda/herceptin/aredia
3/07 xeloda/tykerb/aredia
5/08 taxol/avastin/aredia
2/09 gemzar/herceptin/zometa
7/09 Taxol/Carbo/Herceptin, zometa
10/09 navelbine/herceptin & zometa
2/10 herceptin & tykerb & zometa
4/10 add xeloda &aromasin
10/10 dx with dermatomyiositis triggered by cancer
11/10 restart herceptin, tykerb, zometa
12/10 surgery-place rod in R femur to stabilize bone
1/11 radiation to R femur - 20 tx
2/11 2nd surgery - rod in Left femur
2/11 tx eribulen -- suspended dx brain mets
3/11 brain mets wbr 20 tx
4/11 halaven; discontine 8/11 not working
8/11 radiation to left femur 20 tx'
8-9/11 rad to lower spine
9/11 abraxane/herceptin/zometa
9/12 xeloda/herceptin/zometa
12/12 ablation of liver
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10-04-2008, 09:35 AM
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#6
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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I am in favor of a diet, exercise and supplement section where members can post questions but can also be the depository of studies on diet, exercise and supplements.
It is the biggest way we can not only self help ourselves and each other but to understand prevention and how it all comes together.
Also, I am an advocate of our outreach to the community. How can we reach out in our own communities to make them aware of Her2 Support? In order to grow, we need as many members as possible. A flyer that is specifically written for the newly diagnosed and can be left in cancer centers, doctor's offices and local Breast cancer support groups is the way to go.
I also think it is time to reach out to other groups such as Komen, Annie Appleseed and perhaps others. I am willing to research groups that may align with some of our goals so we can self promote via links to each other etc. Another would be the Young Survivor Coalition. I know I don't have my thoughts on this on a true plan or what it would accomplish yet (perhaps others will comment) but to reach out more fully to the bc community in general. We can discuss Joe.
I will probably have other ideas but was so busy this week (hubby's car blew the engine and we were unprepared to have to go out and buy a new car suddenly - so I have been "out of it" for a couple of days)
__________________
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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10-04-2008, 10:09 AM
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#7
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Webmaster
Join Date: Feb 2005
Location: Home of the "Flying Tomato"
Carlsbad, CA
Posts: 2,036
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Becky,
While you are at it.
Here is a great gift idea. Can you imagine our logo on this baby?
Regards
Joe
__________________
A Proud webmaster to the internet's most informed, educated, COMPASSIONATE and caring group of breast cancer survivors.
Illegitimi non carborundum
My Album
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10-04-2008, 01:31 PM
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#8
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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WOW! Joe, how did that come to your attention?? Not sure this would qualify for one of the grants!
I had a 1968 XKE that was burgundy and this is so much like it! (Had a well-off hubby at that time!)
Never thought of painting it pink, though.
Oh, such fun memories of driving that car across the country ...
Looks like the price tag would be quite a bit out of my range now.
__________________
"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.
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10-04-2008, 02:49 PM
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#9
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Wow Joe...my ex husband has our...his 1970 XKE Roadster with only 32,000 miles on it...it is primrose yellow...I remember we had some disagreement over the value of it when we got divorced...Jaguar International appraised it at $37, 000 almost 20 years ago...he said it was worth $12,500...of course I offered to buy it...he wouldn't sell....not for 12,500....it has a sound like no other auto on earth!
__________________
"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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10-04-2008, 08:52 PM
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#10
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Senior Member
Join Date: Sep 2005
Location: South Dakota.
Posts: 621
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Becky suggested:
"I am in favor of a diet, exercise and supplement section where members can post questions but can also be the depository of studies on diet, exercise and supplements."
I agree that topics along this line would be nice to have here for a quick reference. Maybe we the members could add a website address or information to a particular topic.
The topics would be permanent, such as you already have done with such topics as drug side effects, metastasis, etc. only this would be different in that members and guests could add information to the topic. Possible topic ideas:
Diet
Exercise
Supplements
Recipes
Tea
Vitamins
Omega-3's and Omega-6's
Her-2 downregulating foods
Pallative Care
Chemo Brain
Cosmetics
I have these and more topics in my own documents, but newcomers and senior members both would find such topics useful if they could be accessed from this site.
__________________
Blessings and Peace,
Barbara
DX Oct 02 @ age 52 Stage 2B Grade 3 Mastectomy
"at least" 4.5 cm IDC 1+node ER+61% /PR-
Assiciated Intraductual component with Comedo Necrosis
Her2+ FISH8.6 IHC 2+
5 1/2 CEF Arimidex
Celebrex 400mg daily for 13 months
Prophylactic mastectomy
Estradiol #: 13
PTEN positive, "late" Herceptin (26 months after chemo)
Oct 05: Actonel for osteopenia from Arimidex.
May 08: Replaced Actonel with Zometa . Taking every 6
months.
Accepting the gift of life, I give thanks for it and live it in fullness.
Last edited by Barbara2; 10-07-2008 at 08:30 PM..
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10-05-2008, 04:10 PM
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#11
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Senior Member
Join Date: Feb 2007
Location: Cordoba, Mexico
Posts: 672
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Joe,
Remember that I am here more than willing to help with the Spanish translation or ideas you may have for the new bilingual projects.
Paty
__________________
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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10-05-2008, 09:47 PM
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#12
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Senior Member
Join Date: Dec 2006
Location: Oregon
Posts: 715
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I like Barbara2's idea....A place on the site where we can go to get a list of the diet and exercise wisdom that is shared on this site.
I like the nurse idea too. But I also like our grass roots warrior comaradarie (sp)....(maybe we need spell check. ) I like how we compare notes. And I like how "uncorporate" we are.
Catherine
__________________
Catherine
Found my own lump in the shower
April 2006 at the age of 58
Stage IIB, ER- PR- HER2+++ multi focal tumors, largest 2.3cm
Chemo first: AC/Taxol over 16 weeks
Bilateral mastectomy Sep 06
33 rads after the surgery
1 year of Herceptin completed Dec 07
15 years and no recurrence as of April 2021
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10-05-2008, 09:56 PM
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#13
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Senior Member
Join Date: Sep 2005
Location: Madison, Connecticut
Posts: 638
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Hi Joe!
Wow, that car looks VERY inviting - why don't you raffle it as a fund raiser?!
As a suggestion, I would love to see a website that consolidates all clinical trials (university based AND pharmaceutical company based) for Her 2 breast cancer in one location. A plain English interpretation of each trial would also be a great help since most of us do our own research re clinical trials.
Thank you, Joe for always thinking and advocating on our behalf!
Love Kim from CT
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10-07-2008, 11:37 AM
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#14
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Senior Member
Join Date: Nov 2005
Posts: 943
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I agree with the diet and supplement sub-division on this site.Of course, it would be nice if there were more in vitro studies on this topic to justify that the diet/supplements really work in the body and not just in breast cancer cell lines studied in the lab. However, I doubt that you have enough funding for such a clinical trial, but it would be great if you did. Maybe some of this could be directed toward Dr. Menendez's research on olive oil downregulating her2.
I also agree with brochures to be made for hand out, even if we have to print them ourselves at home and give out to local doctor offices etc.
Another thing, her2support could offer is speeding up ways to get cures via a tissue suppository from her2 positives. Lani had mentioned such a while back.
PS Love that pink car, JOE. Tell you what, I 'll do the medical interpretation, being a registered nurse, for one of those-HAHA.
__________________
Robin
2002- dx her2 positive DCIS/bc TX Mast, herceptin chemo
Last edited by RobinP; 10-08-2008 at 01:18 PM..
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10-20-2008, 03:08 PM
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#15
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Just bumping this back up to the top for those that may of missed this before.
Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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10-20-2008, 03:58 PM
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#16
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Senior Member
Join Date: Nov 2007
Posts: 210
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i am walking out the door, but i wanted to comment on this topic about using professionals as a resource..
i would suggest you contact the nearest pharmacy school to your location. most colleges have internship and externship programs for their students.. Here is a list of the colleges that could help you.
Run to Live |
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10-20-2008, 06:12 PM
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#17
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Senior Member
Join Date: Mar 2007
Location: Greendale, WI
just outside Milwaukee
Posts: 211
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Joe, Since I have not been a regular on this site for the past 8 months, I may have missed this answer, but could you reassure me that: In the event you were hit by a bus tomorrow - we would still have our site available. If not, I would like to have monies put aside so that we are assured of a web master - just in case the horrible happens. Wishing to the best of health and a long happy life. Love you, Karen
__________________
04/05 Onset 49, DCIS, solid, Hist 2/3, Nucl 2/3, 7cm R Brst
04/05 E & P + HER2+++
05/05 Mediport
05/05 Cytoxan & Adriamycin every 3wk x4
08/05 Taxol every 2wk x 4, Herceptin every wk x1yr
10/05 Bilat Mast - my Choice
10/05 3/19 lymph nodes Pos, Stage IIIa
11/05 Rad x 37 Rx, R Brst & Axcilla
02/06 Herceptin stopped (L vent HF 40)
03/06 Started & Stoped Arimidex after 2 mos.-QOL side effects
05/06 Started Tamoxafin
06/06 Bilat Free Flap Reconstruction
12/06 Cardiomyopathy reversed-HF normal
01/07 Bilat Saline Implants
07/07 CA 27-29 steadily rising from 28 in 12/06 to 46 in 7/07
07/07 PET Scan NED, but inflamation at prev surg site.
09/07 Started Femara
10/07 CA 27-29 down to 39
06/08 CA 27-29 down to 32
09/08 Lg joint pain & QOL side effects from Femara, will live w/ to keep CA markers within normal range.
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10-22-2008, 05:07 AM
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#18
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Senior Member
Join Date: Dec 2005
Location: Michigan
Posts: 230
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I too am in favor of a diet/health/ supplement section
__________________
Mary
Diagnosed 11/04 @39yrs. young
Stage IIB
2.5 cm, ER/PR- Her+++, grade 3
Partial Mast., 1/3 pos. node
1/05 full node dissection
4 A/C 4 Taxol DD, Herceptin 1 yr.
30X rads.
BRCA Negative
NED
Hope is the thing with feathers
That perches in the soul,
And sings the tune without the words,
And never stops at all -Emily Dickinson
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10-22-2008, 07:32 AM
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#19
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Webmaster
Join Date: Feb 2005
Location: Home of the "Flying Tomato"
Carlsbad, CA
Posts: 2,036
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Stillhere,
Are you planning a surprise for me? As we remain as the only independent internet resource for bc patients who overexpress the HER2/neu gene, I am sure there are many organizations willing to continue our website. The final determination will be up to our Board of Directors.
We have a conference call this afternoon with one of our Grantors to discuss all of these projects.
Regards
Joe
__________________
A Proud webmaster to the internet's most informed, educated, COMPASSIONATE and caring group of breast cancer survivors.
Illegitimi non carborundum
My Album
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10-23-2008, 03:27 PM
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#20
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Webmaster
Join Date: Feb 2005
Location: Home of the "Flying Tomato"
Carlsbad, CA
Posts: 2,036
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Great News
I have just completed our first round of Grant requests and am happy to announce that we will be funded for several of our programs:
1. Professional Review and Analysis - Latest research results interpreted by a medical professional.
2. The HER2 Survival Guide. A publication designed for the bc patient who is HER2 + , medical info, navigating the system, success stories...
3, Luchaportuvida - "Fight For Your Life" A Spanish language breast cancer support website.
4. We will also be introducing a health, lifestyle and alternative medicine section.
Regards
Joe
__________________
A Proud webmaster to the internet's most informed, educated, COMPASSIONATE and caring group of breast cancer survivors.
Illegitimi non carborundum
My Album
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