One Day in Pinktober

[Mtngrl]

Everyone,

Today is Metastatic Breast Cancer Awareness Day.

While most people think they are super-aware of breast cancer (and while I really do think we're better off now than in the days that it was hushed up and hidden from view), most don't know two important things: 1) people are much less likely to get breast cancer than they've been led to believe and 2) if they do get it, they are much more likely to die from it eventually than they think. Maybe you could do something (such as a Facebook post) to spread the word.

If almost all the deaths are from metastatic breast cancer, but only two to five percent of the research money is going to studying metastasis, I'd say we have a problem of resource allocation. Unlike some other cancers, early detection and treatment is no guaranty that every person with breast cancer will be cured. It comes back for far too many, and far too many are metastatic at diagnosis, even if they have been getting their mammograms and checkups.

These are sad times for our forum. Today I'm praying for all the people living with metastatic breast cancer, and all those who have died. My heart is heavy. And I'm scared.

[Redwolf8812]

Nicely put. May I copy this to my facebook page?

- penny

[Mtngrl]

Penny,

Be my guest.

Blessings,

[Nancy L]

Thank you for starting this thread again this year. Breast cancer awareness is not the elephant in the room. Metastasis is. You would have to be living under a rock to not know about breast cancer. What never gets much visibility is how many women (and men too) live with the disease, how many die each year and the number of lives that are affected.

This is why I support the Noreen Frasier Foundation. Noreen has metastatic BC. The foundation is focused on metastatic BC. I have seen her on TV twice talking about her work, once in a scarf and last night with a butch. She is on the chemo roller coaster. Last night she talked about a project with UCLA to find a drug to make metastatic BC a chronic disease like HIV. Her foundation gave $1M. She said a drug is in clinical trial and is showing promise but she didn't say the name of the drug or the pharma involved. I am going to see if I can find anything in NIH about this.

I would also like to raise visibility to an informative discussion last year on the state of metatastic research in case some of you missed it. Do a search on "metastatic breast cancer and Nancy Brinker". It was a very informative discussion. I tried to post to that tread to bring it to new posts but it didn't happen----guess it was flagged or too old. I admit to not understanding everything about this sites maintenance.

Until the funding model changes to focus on understanding and stopping metatasis, very little will really change. We need to move past awareness campaigns to supporting efforts to end this disease once and forever or at a minimum turn it into a chronic disease. Most people don't realize that ending many diseases like breast cancer is the only way health care costs will ever be controlled. I have read a three week treatment of TDM-1 will cost more than $5K. Each new drug is more expensive than the last and these costs are unsustainable.

I agree with Phil that that the FDA approval process needs to be reformed but I think the govt grants for BC research do too. If Romney wins, maybe we can write a letter to Ann with all our names and see if we can get an funding advocate in the white house. Yes, she was lucky to have only stage 0 breast cancer but I can tell from when she talks about it that it is still on her mind. We need a very visible high profile person to take on this cause, like a Michael Fox or Magic Johnson or Lance Armstrong. I have been waiting for a surviving spouse to take up the cause with passion but I am still waiting.

I will add the following information which I read today.

Metastatic Research Funding: government sources
Danny Welch, PhD, a researcher on metastasis at University of Kansas Cancer Center (previously at University of Alabama) says only a few hundred scientists in the world are trying to understand the process: “It’s responsible for 90 percent of the morbidity and mortality, but gets less than 5 percent of the budget.” click here. see page 4. Quote is based on European studies and appeared originally in the Journal of European Cancer.
*
Metastatic Research Funding by Susan G. Komen Foundation
2012 ad campaign SGK states: “In just the past six years, over $35 million in funding has been awarded to help interrogate why cancer spreads, discover which genes can suppress tumor growth, develop therapeutics to target metastasis and find ways to help the immune system fight metastasis.*
Using the Komen Audited Financial reports MBCN calculated the total Public Support & Revenue raised for the same last 6 year period which totalled: $2,012,000,000 or about $2 Billlion dollars. 36 million for metastatic research as a % of the total revenue raised = 1.7% (round up to 2%) In other words, $200 goes to metastatic research for every $10,000 raised by SGK.

[BonnieR]

I think that the rosy pink glow makes everyone feel good and complacent. But a whole lot of it is just window dressing....

Keep the faith.

[Mandamoo]

Thanks for raising how many of us are feeling. I am fortunate that in Australia the funding models are different however, there is still not enough expenditure on Metastisis and personalised medicine. Unfortunately (and also fortunately) the developed world is largely dependent upon the clinical trials and research conducted in the US for the development of treatments so what happens there impacts all of us.

It is particularly poignant to discuss this as we have recently said goodbye to Brenda and have Sheila going through a difficult time. I have also said goodbye to friends this year - all under 40 with triple negative disease for which there is so little treatment.

[Mtngrl]

Nancy L--thanks for your comments. I was the originator of the "Metastatic Breast Cancer and Nancy Brinker" thread. I had just finished chemo, was nearly-bald with no eyelashes and few eyebrows, and had just read Pink Ribbons, Inc. Now, a year later, I'm still here but others who I knew and loved are gone, and Denise has been "promoted" to the Stage IV club.

It's been a good year in some ways. We have Perjeta, and TDM-1 is supposed to be approved by the end of the year. There are many treatments in the pipeline, especially for HER-2 positive cancers.

The way science works, people often stumble upon insights into one thing when they study something else, so the low numbers for research into metastasis may not be quite as scandalous as they seem at first.

Lots of money is going into breast cancer research. It could be coordinated better. Right now the emphasis is on developing treatments, and there's a lot of money in "successful" ones. (It also costs a huge amount to get there, with the system we have right now.) There's no incentive to collaborate, and that's likely to be a problem.

Good to know about the Noreen Frasier Foundation. I like the idea of funding targeted research directly.

Let's hope they keep us all alive long enough to be around for the cure. Better yet, let's hope they figure out how to prevent it, so our daughters and granddaughters don't have to worry about it at all.

[Laurel]

Yes, all is so very true, but do remember that screening and awareness does lead to early detection which reduces the incidence of metastatic BC.

So well said, Amy. I agree with you. May our daughters and nieces never know the scourge of BC!

[vballmom]

I'm so conflicted. I am a mom of college athletes and for years I have been involved in pink events. When I first started, I was so excited to see how the girls responded. They were thrilled to be giving back to the community and pink just made it more fun. As much as I understand the loathing of the pink, I am careful with my public words, as I don't want to squash the efforts to raise money and keep breast cancer in the forefront of everyone's mind.

Last week, I posted on Facebook "We're aware. Find a Cure." A business friend of mine liked it so much she created t-shirts and mugs. The graphic has a pink ribbon.

My BC support group ladies have been posting things we want people to know on Facebook throughout this month. Our own PSAs. It's important for us to be our own advocates and educate as many people in our world as possible.

[KristinSchwick]

Missing all my cyber friends that have lost their battles. RIP

[Mtngrl]

It's not at all clear that early detection prevents metastasis or improves the mortality statistics from breast cancer. Several well-designed studies show that it has no effect, including one large study last year of matched populations in Europe. Earlier detection had zero effect on the death rate. The recent drop in mortality is from better treatments, not from early detection.

I hate hearing the five year survival rate quoted. It simply doesn't mean breast cancer is curable if caught early. Some are. But some never would have been a problem, and people with that kind needlessly go through the expense and trauma of treatment. And some metastasize sooner or later (often sooner, as many of us on this board know) no matter when they were first diagnosed and treated. We don't know enough to tell which types are curable, and which ones never would become deadly.

I've seen varying numbers, but this is approximately correct: Twenty to thirty percent of early stage cancers recur at Stage IV. Five to seven percent of cases are metastatic at initial diagnosis. So twenty-five to thirty-seven percent of people with breast cancer will end up metastatic. A tiny fraction (1 to 3%) will experience permanent remission. A few live a long time--twenty years or more sometimes--with stable cancer. Some even live long enough to die from something else. The rest will die from breast cancer, half within about 30 months of the Stage IV diagnosis and about 85% within five years.

I'm not just sitting around waiting to die, and neither is anyone else I know who has metastatic breast cancer, but 39,000 people die from it every year in the U.S.

The cause marketing folks don't want that known, because it's a downer. It would interrupt their cash flow. They are not trying to cure cancer. They are in the cancer fundraising business. The fundraising has become an end in itself. They've lost sight of their mission.

People used to walk or demonstrate to effect change in the system. Early breast cancer activism was modeled after AIDS/HIV activism. The first ribbon (a kind of salmon color) was created by a woman who, on her own, sent it to people suggesting they write their elected representatives to demand change.

The "Big Pink" organizations "partner" with the companies that profit from the status quo. I'm not saying the status quo is bad. It's keeping me alive, and I'm grateful. But take Eli Lilly, for example, which makes breast cancer medicines and also makes rBGH, the bovine growth hormone that stimulates milk production and may increase the risk of breast cancer. Or cosmetic companies, which sponsor big fundraisers but put known carcinogens into their products.

There's also a problem with putting different cancers into silos. We on this forum have breast cancer, so we care a lot about that, but the overall "war on cancer" is not being won either. (Again, prevention is the best thing. Refrigeration brought a huge drop in stomach cancers. Cutting back on cigarette smoke exposure has reduced the lung cancer rate dramatically.) Stepping back and studying environmental factors, clusters of cancers, genes that may predispose people to more than one cancer, etc. could be productive. So could a regulatory system that put safety ahead of profit.

People want to help. They care. Getting them to buy something with a pink ribbon on it makes them feel as if they've made a difference. In some cases they do, and the solidarity and sense of community that the events generate surely does some good too. But the whole pink ribbon phenomenon is unregulated. It's very unclear where all the money is going.

My big beef with Komen is they're still telling the story that early detection is your best chance of being cured. No, not getting it in the first place would be the best thing. With up to 40% of people who get it eventually dying from it, it's not exactly a curable cancer.

So we get one day a year to remind people of that, or to think about what we are going to do about it in the time we have left.

[jml]

Thank you Amy (Mtngrl) for your incredibly informative posts.
I have grown to really dislike "Pink Ribbon Month" because it's not about a funky pink wig, a pink chip clip or fuzzy pink socks.
I think making Pink Ribbon Month so cutesy and FUN does a diservice to this disease and the unchanged mortality rate in spite of the millions of dollars raised walking 2 days, 3 days, 5K, etc. I don't mean to take away or discredit or disrespect the thousands of people who participate in the "celebrations" of this month, but I do assume that the majority are not aware of the entire picture.
Sorry to seem so cranky, but I'm particularly sensitive and frustated and saddened because of the recent losses and struggles of our long term Stage IV sisters.
This year is the first time in my 10 years as a Stage IV Survivor that I have discovered 2 websites dedicated to the facts and statistics of living with MBC.
1) www.MBCaware.org (http://www.MBCaware.org)
"This October, METAvivor seeks to place a spotlight on “The Elephant in the Pink Room” - metastatic breast cancer,
and the Genentech sponsored
2)www.facesofmbc.org (http://www.facesofmbc.org)

Even though we are a small part of the BC population, we are definitely under represented in the media and and for every woman who fears this disease, from initial diagnosis to potential recurrence and progression, The Face of Stage IV has to be out there, to represent HOPE for all of us.

Pinktober is not over yet. And there's always next year...
God willing, with Faith and Hope.

Jessica
Dx-5/17/02 - 33 yo; Stage IV - L IDC w/single liver met
1) Herceptin + Navelbine x 8 weeks - No response; progress to innumerable,immeasureable liver mets
2) ISIS 2504 + Herceptin - 6 mos, partial response
3) Taxol + Herceptin x 13 weeks to NED!
NED for 1 year
9/04 - Single liver lesion recurrence
Taxol + Herceptin - on/off to beat back lesion
12/05 - R Hepatectomy; Liver NED until 2009
3/06- Local recurrence - Left breast, IDC & DCIS, but holding treatment while continue to heal from Hepatectomy.
12/06 - L mastectomy + reconstruction through 8/07
10/07 - Recurrence - supraclav nodes
4) Gemzar + Herceptin - on/off controlling nodes thru
9/08 - 7wks Rads to supraclav nodes
10/08 - Acute Renal Failure - nodes in belly stricturing kidneys. placed permanent ureteral stents
Back on Gemzar + Herceptin, but no longer responding.
5) 05/09 - Tykerb + Xeloda - partial response x 5 mos
6) 10/09 - Xeloda + Herceptin - no response, disease progresses
7) 2/10- Ixempra + Herceptin - partial response x 12 wks.
Discovered single brain lesion x 4mm & liver lesions growing while screening for TDM1 + PI3Kinase study.
6/10 - Novalis to treat brain met - SUCCESSFUL!
8) 6/10 - Chemo-embo w/Adriamyacin to de-bulk liver lesion.
9) 8/10 - Screened & Started TDM1 EAP
Immediate response, disease in belly responds dramatically.
2/11- questionable progression of lung nodules
Discontinue TDM1
10) 3/11 - PI3Kinase + Herceptin - intial good response in 1st 6 weeks but LFT's elevated.
11) 7/11-Discontinue PI3Kinase + Herceptin study;
Disease progression - 2 small lesions in colon – docs have never seen this before in BC
11) 8/11 –Start new combo Halaven+Herceptin
10/14/11 -Completed 3 cycles (9 wks)Halaven+Herceptin...
10/18/11 - Scanxiety time -1st scans since starting this regimen
Good interval response, continue on H+H!
10/25/11 – new 2mm questionable spot in brain? Due to Novalis or new disease?
Re-scan in 8 weeks.
1/3/12- Disease progression; 50%increase size & SUV-R lung, middle lobe 6cm lesion.
R supraclav node multiple, miscellaneous nodes in belly. Colon lesions fired up.
12)Herceptin+ metronomic Cytoxan + Methotrexate.
…on a hope & a prayer. Only chemo I haven’t been on is Taxotere.
Hurry up Pertuzumab & TDM1!
Follow Up Brain Scan on 1/18/12…pleasepleaseplease be okay. I can’t take much more.
1/18/2012- 8 new spots in 8 weeks since last Brain MRI
one 2cm spot in brain stem, one 2cm spot in R temporal lobe.
No symptoms, THANK GOD!
1/25/12 – Start WBR x 15 rounds
2/10/12 – Oral Cytoxan WORKING! Melted supraclav node & undetectable by US!
2/14/12 – FINISH 15 rounds WBR;)
6/12/12- Continuing on oral Methotrexate BID & Cytoxan qpm, but on chemo break
for 3rd week due to low counts.
6/15/12 – Yay! Resume chemoJ
6/25/12 – Chemo break again due to low counts L
6/28/12 – PET Scan & Brain MRI this week…
NED IS BACK!!! NED in the HEAD, NED in the BODY!
10/26/12 – Still NED in the HEAD, but single troublesome node in chest, precariously close
to superior vena cava/heart. Not a perfect scan, but pretty darn good.
Maintain current treatment and Echocardiogram on 11/1 to keep an eye on node.