Where are the metastatic breast cancer patients?

jenrio · October 2013

I'm happy to read a story on Oprah:

http://www.oprah.com/health/Breast-Cancer-in-Young-Women-Preventing-and-Detecting-Cancer

My own experience and dx are almost identical to this young woman's. Here are the things I learned since my diagnosis:

1. 90% women who die from breast cancer actually die from metastatic breast cancer

2. Most of the adjuvant therapies (chemo, radiation, surgery, hormone therapy, targeted HER+ therapy) were invented 30+ years ago. A few 10 years ago for HER+ women only.

3. Despite all these early stager women being shunted into all these adjuvant therapies, that are expensive, full of side effects (see Robin Robert's story), still about 30% of stage II progress into metastatic breast cancer over 5-10 years.

4. metastatic breast cancer patients live a few years, if they are lucky. the death rate over 5 years is 60%. (we took 30 years to bring this down from 90% death rate)

5. metastatic breast cancer receives about 10% research funding, though it kills 90% of breast cancer patients. Some research/charities sound like they are funding "metastasis prevention" or "vaccines". But that is another name for "adjuvant therapies", which is really targetting earlier stagers and will likely take 10 years to see whether they are just 50% better and still metastatic patients die.

6. I read the so called breakthrough lists for breast cancer research,

http://abcnews.go.com/Health/BreastCancerCenter/big-breast-cancer-breakthroughs-2013/story?id=20436617#9

Only 1 breakthrough (#9) actually is a breakthrough for metastatic breast cancer, the average PFS for a subset of metastatic breast cancer (hormone positive) are measured in years (2 years) and response rate > 50% and this new drug is invented by the same UCLA team that brought us Herceptin. Almost every other drugs were just a few months here and there. This is akin to a single soccer team winning the world cup every time for decades (all other teams just make appearances and look good), fans and donors should be crying foul. Where did all the other billions of dollars go? They funded 30 year+ technologies like mammograms, chemos, surgeries, radiology probably, but not the real breakthroughs.

I want to see more stories about the sad reality of metastatic breast cancer and the misallocation of resources in breast cancer research this month. The silence is deafening.

To answer my own question: Where are the metastatic breast cancer patients? What breakthrough could we help deliver for them? We took 10 years to deliver a cure for HIV AIDS. How could we deliver the cure for Cancer, metastatic cancer or metastatic breast cancer sooner? These are the questions everyone should ask this October. Not just on October 13th, the Metastatic breast cancer day. But every day in October. 90% of Pinktober should be about Metastatic Breast Cancer.

macygrace · October 2013

Well, I'm still here believe it or not.

I always thought this needed some attention. I even found a discussion about it on this forum.

macygrace · October 2013

My links didn't paste. Try again...

http://alumni.cdrewu.edu/cancer/News_Release.asp

http://community.breastcancer.org/forum/79/topic/763952

jenrio · October 2013

This is long overdue. But great development, I want to hear about MBC this october

http://www.inspire.com/groups/advanced-breast-cancer/discussion/finally-promising-press-and-action-this-oct/

A blog post from a 13 year MBC survivor:

http://sandraspiveysite.wordpress.com/2013/10/11/an-open-letter-to-breast-cancer-researchers/

cp418 · October 2013

http://www.breastcancerdeadline2020.org/about-the-deadline/progress-reports/2013-progress-report.html

There will be a Q&A conference call regarding the Third Annual Breast Cancer Deadline 2020^®Progress Reportscheduled for today, Thursday, October 17 at 3:30 pm ET.Dial 866-818-1223 and an operator will connect you to the conference call.

During the call, I will discuss the findings of the Progress Report and answer your questions. Please RSVP to let us know you are attending by replying to this email. When you RSVP, please send us questions that you would like answered. We will respond to as many questions as we can during the call.

Here are a few highlights from the Progress Report:

Breast cancer incidence and mortality remained essentially unchanged since 2011. Mortality rates appear to be decreasing slowly—but that is certainly not progress. In fact, the rate of decrease in mortality seems to be slowing, rather than increasing.
There were no major advances in treatment for breast cancer in the last year. In the past year, the FDA approved three drugs for the treatment of metastatic breast cancer, with only one of the drugs showing an improvement in overall survival.
The amount of research focusing on metastasis is greater than two years ago. While federal funding of breast cancer research overall has decreased in the last two years, the proportion of research funds coded in the area of breast cancer progression and metastasis has increased during that same period.

ihatesnowihatesnow · October 2013

I posted your link on http://boinc.bakerlab.org/rosetta/

jenrio · October 2013

ihatesnowihatesnow, the rosetta app is pretty cool.

Cancer research UK has some games trying to crowdsource cancer research as well

http://www.fiercebiotechit.com/story/cancer-research-uk-mulls-multiple-video-game-options/2013-06-17

Susan love foundation also have a crowdsourced research project

http://www.parade.com/215291/lauragoldstein/breast-cancer-crowdsourced-cure/

Back to my bandwagon though, *curing* metastatic breast cancer just needs to be the front and center of all breast cancer research, and the current pace of slow progress and expensive continuation of 30 year old technology in breast cancer care, the age old emphasis on prevention/early detection/adjuvant metastasis prevention has taken us down this 30 years of expensive futility and will continue to distract us if we let us be distracted.

macygrace · October 2013

I found this to be note worthy .

http://cancerres.aacrjournals.org/content/64/3/1026.full.html

jenrio · October 2013

A lot of preclinical drugs are called "promising", some are knockoffs of good drugs, about 10% of preclinical winners end up as phase I candidates, 10% of which gets through phase 3. Then most of these 1% gives a few months to the responders in metastatic population with a response rate of about 10%-30% (the non-responding 70-90% probably started vacation somewhere permanently or repeat). These lucky drugs are declared "winners", "breakthroughs", and join the "the many options", "treatments but not cures". To make money off these drugs, there are two lucrative paths:

a. start adjuvant trial on early stage BC population at great expense and wait 10 years, and SELL to the early stagers as metastasis preventive at great expense and possibly detrimental side effects, hit the adjuvant jackpot.

b. meanwhile charge hundreds of thousands to as many metastatic patients as their desperation will demand and insurance will cover, MAYBE extend a few precious months for the lucky ones, and leaving the rest to fend for themselves.

Considering that metastatic breast cancer causes 90% of breast-cancer related deaths, and stage IVers were the backbone of drug research, yet gets <10% research funding, gets <10% publicity, gets 1 breakthrough for every 9 so called "breakthroughs" in breast cancer research. Is this really rational allocation of resources to really save lives?

In the last 20 years, only two drugs that really are both original and highly effective on a select population. They are herceptin & palbociclib. They hailed from the same scientific team. Coincidence? or systemic lack of competition in the pharma world? or perversion of incentives?

Your call.

macygrace · October 2013

Ever hear of this woman?

http://www.noreenfraserfoundation.org/about/why-nff/

jenrio · October 2013

Noreen's doctor is Slamon of UCLA. The same team who came up with 2 true breakthroughs (the only 2) in the last 2 decades: Herceptin and Palbociclib. They prove that true breakthroughs are possible, may even have little or no competition from other teams who are satisfied with slow, beat-around-the-bush type of progress (that is sold as "breakthrough"s). Noreen Fraser certainly did a good job funding good research effort.

Now everyone should do the same. Do their homework and fund basic research and the research that truly shoot for the metastatic CURE, instead of shooting for expensive, slow, beat-around-the-bush type of nonCures (euphemistically called prevention, finding needle-in-the-haystack causes of cancer, detection, adjuvant, metastatic prevention)

This article describes origin and the funding methods for standup to cancer

http://www.onclive.com/publications/contemporary-oncology/2010/fall-2010/Breast-Cancer-Survivor-Noreen-Fraser-Turns-Anger-into-Action

http://www.cancer.ucla.edu/index.aspx?recordid=480&page=644

Her effort raised $150M. This is chump change in the breast cancer research world (we spent $4 billion to upgrade analog mammogram equipment to fancy digital ones without better accuracy, we spent billions every year for 30 year old technologies like surgery,rads and chemos and mammos that improves stage IVer's life expectancy slowly and unsurely).

Palbociclib alone would make this $150M the best chump change spent in actually curing breast cancer. It's amazing what a few people could dream and do.

Here's more reading about palbociclib as compared to other targetted newest drugs:

http://killerboob.blogspot.com/2013/07/natures-review-of-targetted-bc-medicine.html

Hope991 · October 2013

Hi Jenrio,

I am new at this, but I have a message to communicate concerning palbociclib. There is a petition initiated for the expedition of the review, approval and release of palbociclib to the public now, and not later in 1-2 years.
>
> http://www.inspire.com/groups/advanced-breast-cancer/discussion/please-sign-and-share-my-petition/

> https://www.change.org/petitions/fda-expedite-review-of-pd-0332991-to-slow-metastatic-breast-cancer

There are 2,436 supporters today, still need 64 to sign. Please let others know,

Thanks!

gonegirl · November 2013

i am wondering what organization to give my time. Breast cancer action pushes pharma on treatments but seems to be a bit split on focus.

Not sure what about National Breast Cancer Coalition.

I do like Metavivor because they fund the type of research that brought us Herceptin.

What do you all think?

jenrio · November 2013

metavivor focuses on metastatic breast cancer patients, standup for cancer is founded by a metastatic breast cancer patient and helped with palbociclib. UCLA cancer center brings us a lot of good research. I think local cancer centers and children's hospital and fundamental research also deserve your support, just please be clear about what you want to support: The cure for metastatic breast cancer.

Everything else is really distraction: prevention of breast cancer, half-effective/half-deadly definitely expensive adjuvant therapy, some chemical that causes breast cancer, so called prevention of metastatic breast cancer which really is another way of saying "half-effective/half-deadly adjuvant therapy" .

Best wishes

gonegirl · November 2013

yeah. I'm back to METAvivor then. They focus on mets

Where are the metastatic breast cancer patients?

Comments

Categories