Big Data, Pink Ribbons and Racing For the Cure

There are a lot of varying opinions about pink ribbons and breast cancer organizations/fundraising. I participated in the Stomp Out Breast Cancer – Don’t Ignore Stage IV effort because many people are very undereducated about Stage IV breast cancer unless they know someone with it. I also don’t want to get in everyone’s face and shove my opinions down their throats, most of the time. I am mostly focused on getting through my treatment, giving love to my breast cancer peeps (bloggers that I follow – if I somehow don’t follow you, and you follow me, add your link in the comments, I would love to add you to my reader – even if we disagree on the pink ribbon thing).

I do intend on getting more involved in fundraising and metastatic breast cancer initiatives.

I appreciate that there are newer treatments out there should potentially extend my life. Now that I somehow mutated into HER2+ land, I am on a newer drug caller Perjeta. Studies show that adding Perjeta to your regimen buys you on average 1 additional year of life. I am hoping that someday I will get access to Ibrance which went through accelerated approval. It is not approved for HER2+ breast cancer, but it is for ER+ breast cancer. A receptor I have, and I have failed Letrazole, this could someday allow me to add Letrazole back in my regimen and extend my options.

I am a supporter of Susan G. Komen. I went to Washington D.C. (I just didn’t really know how I felt before, I did the Race for the Cure with a team put together by my work friends The Elemonators when I was early stage). I went to D.C, as part of a blog summit and learned about how they spend the money raised and their efforts in funding metastatic research. I learned that 75% of the funds raised within the community go to local organizations, 25% goes to national for research. How the 75% is spent locally based on the need within that community. Patients have a variety of needs during treatment, I learned this as an early stage patient and certainly know it as a metastatic patient. I met Judy Salerno, she is smart, she wants to find a real life cure for metastatic disease. I genuinely like the Komen team, they are listening, they want to help. I also later met the local Salt Lake City team. They are a great team. I never got around to writing about the great job they did on the Pink Party – it happened right in the middle of my metastatic diagnosis (I lost on every auction item I bid on too, BOO! I did buy a pink dress for it, that I liked enough to wear for New Years, maybe I will start liking the color pink?).

What you should be aware of: organizations that slap a pink ribbon on something just to sell a product and make no mention of donating money to any organization (this is true pinkwashing). There are a lot of organizations out there, check what they do, where their money goes and make sure it is aligned with where you want it to go. If someone is selling a hooray for boobies bracelet and pocketing the profits, it may not be where you want to spend your money (unless you are really into wearing a hooray for boobies type of bracelet – I will attempt not to judge you – too much).

Sometimes I am wary when you try to save the tata’s, you should save the person, but – whatever floats your boat if you are raising money for a cause that helps patients. Many things make me cringe, but I just try to let it roll off my back. Take a deep breath, and let it roll… Deep breath, let it roll. Fund mammograms, fund treatment, fund bills, fund research, fund therapy. Help these men and women. This stuff is rough. 1 in 8 women will get breast cancer. 1 in 3 of those will get metastatic breast cancer. That is a lot of people impacted and surviving, there are a lot of people impacted and dying.

I think supporting the comfort of patients is wonderful. One of my favorite local groups is the Rack Pack Foundation, the family that started it here in Salt Lake City has a special place in my heart. They don’t fund research, but they focus on making patients happy, supported and comfortable during treatment.

I also support Metavivor, who does focus primarily on metastatic research. I also like the MBCN network.

I work in marketing. I am fine with companies putting a pink ribbon on a product as long as they donate to a reputable organization. Why? Because they will probably sell the toilet paper anyway. I like that they are raising money for a cause that I care about.

If we get so angry with the organizations that are trying to help us, they will choose other causes. Not that I don’t want to solve every illness on the planet, but I do appreciate every dime that goes into breast cancer research (hopefully good and valuable research, but sometimes you don’t know invaluable research until you have done it). I am also not going to make you dump a cold bucket of ice water on your head (that was an awesome campaign, much props to the ALS, I lost my great grandfather to ALS).

You should look at the organizations in this document: The MBC Alliance. These organizations called out the problems with metastatic breast cancer research being underfunded, and why. It is all there. The website for the MBC Alliance is here. Metastatic patients asked to be heard, we should continue to ask, but progress is being made! HIV/Aids treatment got to where it is today because people were vocal.

Speaking of research. Apple announced the release of an app:

Share the Journey: Mind, Body and Wellness after Breast Cancer

Its purpose is to help millions of people understand and manage effects of their breast cancer treatment, while contributing to a body of knowledge that can smooth the journeys of those to follow. Komen, along with, Avon Foundation for Women and the Dr. Susan Love Research Foundation, is proud to help spread the word and enlist participation in this game-changing study.

When contacted by the PR firm announcing the app, I asked how this applied to metastatic patients, the response I received was:

The app itself is designed to gather symptomatic information for women during and after treatment. Women with metastatic breast cancer often endure multiple treatment types (concurrently and/or sequentially) and provide valuable insight into the interactions of treatments and to different bodies’ reactions to different types of treatment. This may help researchers determine the most viable order of treatments for future patients, and understand which different treatments will be the most successful (and enduring).

With an information-gathering program like Share The Journey, the more women with different body types, disease states (including women who have never had breast cancer), and lifestyles who participate, the more representative the data is and the better the odds that researchers can discover valuable patterns. For a metastatic patient, a discovery made from the data could be the reason why a doctor chooses one option over another for the next treatment, or one down the line.

Big data is on its way folks. Are you going to join? I signed up.

I found out today that I will be the honorary Race Chair for the upcoming Race for the Cure here in Salt Lake City, UT on May 9, 2015 – which I am super excited about. The Elemonators are back! So please join my team or donate! Someone please join my team, don’t make me be alone (Mike is going to sign up, so I won’t totally be alone). I probably won’t be walking the race since I have honorary duties and such, but I wanted to build a team of awesomeness. It is discounted if you sign up by the 15th. I get to shoot the gun to start the race, watch out folks. Mandi’s got a gun…

I am also going to be participating in the Hear My Voice program funded by the Avon foundation and Pfizer at the upcoming Metastatic Breast Cancer Conference. I am excited to meet some fellow metastatic thrivers there!

Mike and I stopped by the park near our house after running errands on a beautiful day.

Mike and I stopped by the park near our house after running errands on a beautiful day.

If you are a patient that has a mastectomy or breast reconstruction coming up, I am giving away a Brobe on March 25! Sign up at the bottom of this post ->>.


Author: Mandi

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