New Posts New Posts RSS Feed - This is just wrong
  FAQ FAQ  Forum Search   Events   Register Register  Login Login

This is just wrong

 Post Reply Post Reply Page  <1 121314
Author
mainsailset View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jul 27 2008
Location: Washington State
Status: Offline
Points: 5004
Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Feb 02 2015 at 3:43pm
I would suggest that all of us not only sign the petition but put it on our FB page and perhaps take the links to our doctors' offices and ask that they sign the petition as well.
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
Back to Top
positive_attitude View Drop Down
Groupie
Groupie
Avatar

Joined: Sep 15 2014
Location: Louisiana
Status: Offline
Points: 67
Post Options Post Options   Thanks (0) Thanks(0)   Quote positive_attitude Quote  Post ReplyReply Direct Link To This Post Posted: Feb 03 2015 at 9:13am
Donna,

Thank you for sharing this. One of my colleagues' mother died of breast cancer a week ago. I was more angry than sad because she lived only one year after her diagnosis of stage IV breast cancer. The medical field needs to move faster to cure this disease. I travel 6-7 hours to see a 74-year-old oncologist and used a chemo regime that has been used for 20 or 30 years. I chose to do that because the long-term survival rate of his patients 10 or 20 years ago is still better than what the standard of care can produce today. That is really sad. If the younger generations of oncologists are no better than a 74-year-old doctor, what kind of future do we and our children have? This got to change! More research is needed to improve the standard of care!


Edited by positive_attitude - Feb 03 2015 at 9:16am
DX IDC TNBC May, 2014, 4.7cm, 5.8cm on Taxol. Taxol 4 weeks, AC 6. double mastectomy OCT 2014. 1.8cm residual in breast and 3mm a lymph node. BRCA-. 11/17 Abraxane,5FU.11/20, rads, 1/19 FUMEPx2
Back to Top
btstark2003 View Drop Down
Senior Member
Senior Member
Avatar

Joined: Apr 24 2010
Location: St. Louis area
Status: Offline
Points: 426
Post Options Post Options   Thanks (0) Thanks(0)   Quote btstark2003 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 03 2015 at 11:52am
I stopped donating to the Koman Foundation in June 2013 when the news came out that the CEO at the time (Nancy Brinker, Susan KOman's sister) was set to receive a total annual compensation package of $684,000.  While I admire the Foundation that Nancy Brinker built and all the positive work that Koman has done to help de-stigmatize breast cancer, it seems to me that Ms Brinker lost her moral compass somewhere along the way.

Beth
2008 Stg1 TNBC, LX, FEC+T, rads
2010 2.5cm tumor BRCA-, BMX,CMF
2011 LN mets, Gem/Carbo, surgery, rads
2012 lung mets, PI3Ki/taxo
2013 anti-PD-1
2014/15 Xeloda, IMMU-132, eribulin
Aug 2015 Keytruda
Back to Top
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 13510
Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Feb 04 2015 at 8:36am
The success rate for getting NCI (National Cancer Institute) grants is between 10%-20%. The most experienced investigators have a success rate approaching 30%. That means 70%-90% of people doing cancer research are not funded. "https://gsspubssl.nci.nih.gov/blog/articles?funding_patterns/2013" It is crucial that non-profits with hundreds of millions of dollars participate to cover these costs. Awareness and early detection is a small part of the puzzle. And, may be doing more harm that good. 

http://www.nytimes.com/2013/04/28/magazine/our-feel-good-war-on-breast-cancer.html?pagewanted=all&_r=0

Bill Gates recently answered this question: "Do you have thoughts on (medical) research back here in the USA? Governmental funding is reaching dangerously low levels, and many bright and talented clinicians and scientists aren't even applying for federal grants knowing they have little chance of being funded. What can we do about this?

His answer: 

"Research is very underfunded compared to the ideal. Society captures so much benefit from innovation that inventors don't so there is not enough risk taking. Government (and Foundation) funding of research helps but it still should be more. The United States funds a lot more than any other country even relative to its success. It should do more medical and energy and educational and other research"

http://www.reddit.com/r/IAmA/comments/2tzjp7/hi_reddit_im_bill_gates_and_im_back_for_my_third/co3ql3c?context=3

His foundation focuses health in 3rd world countries and has done amazing work, with millions of lives saved because of him. Can Komen say that? How many millions of lives do you think they have saved, comparatively? 

Yet, progress is being made. Look at thishttp://www.wsls.com/story/28012747/uva-researchers-discover-key-to-cancers-spread. It is not breast cancer and different cancers behave differently, yet finding how one works can lead to discoveries into how they all work. 

We need a three-pronged attack: the government, the drug companies, and the non-profits. Right now, we have one (drug companies) and 1/4 (government funding). We barely have non-profits involved, considering the 5% estimated number linked in my petition. Find the key to why cancer metastasizes and you have found a lot. 

Please keep passing this petition along and sharing it. You can share it twice or three times - not everybody sees everything the first time! Tell any of your friends who have supported you in your cancer struggle, or have been a caregiver in cancer, or who have a heart, to sign this petition and convince the big non-profits, most especially Komen, that all we want is what we deserve - 50% to go towards funding research. It is time.
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

Back to Top
mainsailset View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jul 27 2008
Location: Washington State
Status: Offline
Points: 5004
Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Feb 04 2015 at 10:10am
And it occurs to me again that with the Sequester NIH research was cut back yet again. We also watched this Fall when the Ebola scare came politically to town and then rather than create new funding for Ebola the NIH was forced to move monies over from other research, including cancer, to cover the uptick in Ebola research. In a perfect world shouldn't there be a lock on existing research that its funding can't be robbed (read stopped in its tracks) to promote a different research?
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
Back to Top
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 13510
Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Feb 22 2015 at 12:56pm
I think this is a great opportunity for all of us to help raise some money for TNBC Research.  100% is going towards research!  We need to support the TNBC Foundation and all they do for us.  It's not too late to register.


Originally posted by ArleneB ArleneB wrote:

Yes...you read that correctly! We are excited to announce that 100% of every donation we receive in support of TNBC Day events (including online fundraisers) will be designated exclusively for TNBC specific research efforts! 
  
WE NEED YOUR HELP! TNBC Day is right around the corner. We are asking all of our friends and supporters to take just 5 minutes and set up a quick and easy, online fundraising page to send out to family and friends by email or social media. There are NO FUNDRAISING REQUIREMENTS OR FEES. If you raise $10, that's ten more dollars we can dedicate to research projects aimed at finding successful treatments for triple negative breast cancers.
 
TNBC Day has raised almost $500,000 since our inaugural year in 2013. Those funds have enabled us to offer more grants than ever before to promising research initiatives. Click HERE to read about some of TNBC Foundation's recent grant awards.

Click the registration link below to set up your online fundraising page today!

REGISTER HERE


DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

Back to Top
rosewater View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jun 30 2014
Location: Vancouver, B.C.
Status: Offline
Points: 130
Post Options Post Options   Thanks (0) Thanks(0)   Quote rosewater Quote  Post ReplyReply Direct Link To This Post Posted: Feb 22 2015 at 10:01pm
Hi Donna,

Thank you for the info. I started a fundraising page today after reading your post and just today I've raised $455!! I can't believe it! It was really easy. Here's my link:

http://tnbcday2015.kintera.org/faf/donorReg/donorPledge.asp?ievent=1118403&lis=1&kntae1118403=601E02532E9A42B9BD141C7287BF53A4&supId=419485238

Smile

Take care,
Natasha


DX IDC TNBC 03/14 age 40, Stage 1, Grade 3, 2cm, 0/4Nodes, lumpectomy 04/14, DD A/C x4, Taxol x12, Carboplatin x2, BMX 10/14, rads x28 Finished Jan 14/15, Oopherectomy Jan 29/15 BRCA 2+
Back to Top
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 13510
Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Apr 10 2015 at 3:47pm
I am so happy to know the TNBC Foundation is going to use 100% of the donated money from TNBC Day for research!  We should all step back and thank them for all they do for us and research.  I just wish more charities would do the same.  Maybe Komen needs to learn a lesson from the TNBC Foundation?  Thank you again for using the funds for TNBC Research!ClapClapClap

Well it looks like Komen is once again starting with their misleading ads proclaiming to finding a cure.








Edited by 123Donna - Apr 12 2015 at 9:00pm
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

Back to Top
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 13510
Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jun 10 2015 at 10:54am
Some things never change for Komen, but only 11% for Research?  Are you kidding me?

2014 Total net revenue $294,121,018 wow, that is a lot of money. Now Research Awards and Grants- $32,911,550 Not a huge percentage for research, "For The Cure" now is it? They SAY they spent $43,396,973 on research, but that includes things like "RACE SERIES PROMOTION", MARKETING AND COMMUNICATIONS, SALAREIS AND BENEFITS, ($6,130,399), CONFERENCES, CONVENTIONS AND MEETINGS, PRINTING AND PUBLICATIONS,TRAVEL...and on and on. " FOR THE CURE"?   TRY SPENDING MORE TO FIND THE CURE AND LESS ON THE BUSINESS OF CANCER!
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

Back to Top
made2b2gether View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jan 27 2014
Location: Japan
Status: Offline
Points: 155
Post Options Post Options   Thanks (0) Thanks(0)   Quote made2b2gether Quote  Post ReplyReply Direct Link To This Post Posted: Jun 10 2015 at 11:23am
absolutely agree Donna. It's ridiculous.
A good percentage should go to research.
Whats the point of souvenirs in pink ribbons and
races when the point is to eradicate Cancer and to
Make living with it easier. These Charities are showing
a corrupt side and it's not Cool.
DX Jan06 `14. IDC TN 2.0cm. Grade 2. Neoadjuvant: Taxolx12,FECx4. Post Surgery LX- Tiny Micromets found in 4/17 removed LN- 6mm residual. Wide Radiation 25x. Carboplatin AUC 6 x 2, AUC 5 x 2
Back to Top
mainsailset View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jul 27 2008
Location: Washington State
Status: Offline
Points: 5004
Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Jun 10 2015 at 4:27pm
I find myself swayed by a posting on facebook from a wise woman who pointed out that much of Komen's funding goes towards financially supporting members, helping pay for expenses, scans, treatment, BRCA testing.

Komen really misses the boat here by not regrouping their PR and pointing to the variety of ways their funds help the bc family. That said, they can do better in how they prioritize and how they manage the monies they bring in. 11% is a sign of failure not success.
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
Back to Top
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 13510
Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: May 02 2016 at 11:23pm

Beating Cancer: The Real Life Battle for Patients and Their Loved Ones

Only medical research can beat cancer, and the tragedy of cancer deaths cannot be softened.

. . . ."The cancer marketing machines use this spin on feel-good cancer as well. Images of women linking arms as they “beat cancer,” inspires the raising of millions of dollars, some for the good of research and helping people, and too much to line the corporate pockets of disease greed. Out of every $100 raised by the NFL during its breast cancer awareness campaign, for instance, only $11.25 went to the American Cancer Society. . . .

. . . . .In the same way, people afflicted with cancer are also human beings. They are not faces in a marketing campaign, a person being given a gift or a lesson to be learned. Cancer is no gift. It is a scourge taking more lives and loved ones than diabetes, strokes and Alzheimer’s. (Only heart disease kills more people than cancer every year). The only hope of beating cancer is medical research, and thankfully breakthroughs have allowed more and more cancer patients to live or live longer."

http://www.curetoday.com/community/susan-fariss/2016/04/beating-cancer 

DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

Back to Top
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 13510
Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: May 02 2016 at 11:29pm
The following is an excerpt from the article.  Please click on the link and read the entire article and graphs.

http://iwantmorethanapinkribbon.weebly.com/blog/komen-race-for-the-cure-more-or-less
The truth is, only 12.06% was spent on research awards and grants. 

It gets worse.
Affiliate payments for the year ending March 31, 2015 totaled $20,910,092.  This means that the local affiliates funded 69.29% of the research awards and grants.  Total awards and grants were $30,174,566 (See Figure 2), meaning that the national office funded $9,264,474 in pure research awards and grants.
 
How much public support and revenue did they declare?  $250,276,362 (See Figure 1).  (Although, their tax form 990 declares gross receipts to be $279,485,608, but let’s stick with the consolidated statements to be consistent.)
 
If we subtract out the affiliate payments from the public support and revenue, the balance is $229,366,270.  This means the percentage that Komen national office actually spends on pure research grants and awards is 4.03%.
 
I’m not an accountant and I’m not a statistician.  However, I can look at these numbers for a single year and see that the majority of Komen’s national funds are not going “for the cure.”   
 
What does it take to change?
  Last weekend, my smoke detector batteries died and I had to deal with that screeching noise those alarms put out until the batteries are replaced.  However, over the next few days, the alarm continued to screech.  Turns out that it was time to replace the entire unit.  It wasn’t good enough to keep putting new batteries in it … a completely new model had to be put into place.
 
When Komen began, the model of public awareness and education was vastly needed.  However, 30 years later, it’s time to replace that model.  It’s no longer acceptable to say, “Early detection saves lives” because if that were true, all early stage diagnoses would result in a 100% cure with no risk of recurrence.  There are too many early stage patients having metastatic recurrences two and three decades after their primary diagnosis.   More research must be given into the biology of tumors to understand how to stop metastasis long before it occurs.
 
Research takes money.  Komen, please open your corporate wallets and designate more money into the area where differences can truly be made.  No more running and racing for a cure.  Let’s have research for a cure. 
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

Back to Top
Annie View Drop Down
Senior Member
Senior Member
Avatar

Joined: Dec 19 2008
Location: Canada
Status: Offline
Points: 887
Post Options Post Options   Thanks (0) Thanks(0)   Quote Annie Quote  Post ReplyReply Direct Link To This Post Posted: May 03 2016 at 8:37am



    Society seems to find a way to bank on anything including the misfortune of others.

    This whole business is amounting to greed and is truly criminal.
Annie TNBC Stage IIA Gr 3 1cm lesion 2/5 lymph nodes+ lumpectomy,FEC & D 30Rads finished(08/2009) BRCA- Chronic Cellulitis due to Radiation-- L.Mastectomy Jan 2012
Back to Top
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 13510
Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Oct 03 2016 at 9:19pm
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

Back to Top
Lillie View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jul 10 2009
Location: Eastern NC
Status: Offline
Points: 3616
Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Oct 04 2016 at 4:29pm
Hello All,
I take advantage of every opportunity to educate people about PinkOctober.   Some think I am exaggerating or just out right lying about the PINK campaign.  I figure if it get the attention of a few, maybe the word will spread.  
 
I Love all of my triple negative breast cancer sisters.  Waiting and praying for a CURE.
 
God Bless,
Lillie
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2018-12 yrs NED
Back to Top
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 13510
Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Oct 07 2016 at 3:29pm
I just viewed this great youtube video.  The charts and graphs are so powerful telling us what we already know - Komen is an amazing marketing company.  Close to 50% is spent on "marketing" and only 11% actually ends up funding research. 



DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

Back to Top
 Post Reply Post Reply Page  <1 121314
  Share Topic   

Forum Jump Forum Permissions View Drop Down

Forum Software by Web Wiz Forums® version 12.01
Copyright ©2001-2018 Web Wiz Ltd.