news from ASCO-- some joyous, some a downer--may set things back a bit - Page 2

phil · 08-05-2014, 07:46 AM

your priority right now is your wife . i admire your tenaciousness. we completely understand. we have done the same. taken breaks from activism to deal w/ tx., s/e. i forget whether you had tried avastin in past - a friend of our with very aggressive her2 got many months of stability w/ brain mets out of it. she tried tykerb but couldn't tolerate a full dose due to s/e. maybe avastin in conjunction w/ herc /perj while exploring other options ?
i really was making a general point about the Broken System , not addressing you personally. each does what they can , when they can, privately or publically. i go public as i feel it will push change the fastest. i am comfortable with my stands - and many share my opinions. Some i borrow from , for ex. : Farber docs have publically said that the pace of research bringing new drugs out noticeably picked up after 2005 or so , but the System is not keeping up . i think it's pathetic that this fda has sat on partial approval of perjeta since june, 2012. many of these drugs stuck in the system are derivatives of already established drugs - anti-bodies like herceptin, various inhibitors, etc. , and could save lives now.

Rolepaul · 08-05-2014, 08:07 AM

I think the part that really angers me is that there are approved drugs and the ability to combine them in treatment is not allowed. So if TDM-1 and Perjeta both have approval, there is not approval to use them at the same time.
Congress told the FDA to simplify the Compassionate Use/Compassionate Care path. If the patient requests a specific treatment because they have a life threatening condition, the ability to treat the person with a specific method that shows promise shall occur. Unfortunately, that does not happen. The standard approvals from many years ago are in place to prevent malpractice suits against hospitals and doctors, and pharma is not approving the use due to the massive lawsuits for side effects that caused damage. In the meantime Rome burns while Nero plays his fiddle.
Phil, I have worked with many outspoken people, and many advocates for the HER2+ cause at NIH/NCI/BreastCancer.org/etc. All of this pink ribbon garbage just makes me mad! Do the research, and do not give away the store to big Pharma. Help the patients with travel, with co-pays and deductibles, and with normal living expenses. We spend $25,000 plus every year on healthcare expenses. One out of every three hours I work goes to cover those costs. Insurance covers the direct cost of 98% of what it takes to keep Nina alive, but the indirect costs are crushing me.
I am a strong advocate for treatment and push the drug companies to go faster because it is in their best interest in terms of profitability. I push the government agencies because they are tax payer funded, and I push the hospitals because they need to save lives without cookbook medical treatment. In fifteen years, this will all be done with a set protocol, but they do not know what to do today. I believe we are where the Dallas Buyers Club movie was with AIDS. Today HIV is under control, but HER2+ is not. I plan on changing that as soon as I can. I work behind the scenes, but we need to have others work in front of the media and with their politicians.

KDR · 08-05-2014, 08:58 AM

The FDA allows pink slime! Cigarette companies thrive! And I need Perjeta right now and can't get it! Nor Alimta (not approved for breast cancer)! FULL APPROVAL FOR PERJETA NOW, NO MATTER HOW MANY TIMES A PATIENT HAS HAD IT!

PAUL AND PHIL-THANK YOU-WHAT ELSE CAN I DO? Who must I speak to? Tell me, I will do it! I have access to a lot of people here in the Hamptons! They run things, this gala and that gala!

Karen

Rolepaul · 08-05-2014, 09:04 AM

Karen,
I will send some people to you through Private email. They might be able to help. Right now I am being told that a certain treatment is "between Clinical Trials". Not really happy.

Mtngrl · 08-13-2014, 12:19 PM

This is interesting and helpful information. I, too, hope researchers don't give up on a cure.

As for treatment cost, I've always had an over-developed sense of responsibility, and I said something to my oncologist about how expensive it is to keep me alive. She helped put it in perspective for me by observing that it costs $1 million per year per soldier in Afghanistan. Someone decided that's an appropriate use of social resources.

Rolepaul · 08-13-2014, 12:46 PM

I think that putting a price on people's lives is unfair to the person and their family. I have worked hard for many years to provide for my family, and paid insurance for just as long. When I calculate all the payments by the companies I worked for and myself, I think we are still less than the 1/4 cost for the last ten years (and it keeps going up). There is a saying that it is best to live a full life and die quickly, but I do not think anyone on this board has lived a full life in my mind.

evlin75 · 08-13-2014, 08:19 PM

it is a constant struggle to get new medications so the cancer patient can keep going. I d not think the expense is wasted as these patients are in LIFE"S clinical trials, as they try new medications and try to get them to work. My daughter has tried most of the approved medications and is now looking at afatinib and neratinib as these two were what the genomic testing by Foundation One suggested might work for her.
I do not have proof as it happened so long ago but believe all the weird mutations they found on my daughter's testing were caused by DES. I was treated to prevent miscarriage while pregnant with my daughter.
I wish all here the best and hope something works for each for more quality time.
Daughter has been stable except for a large subclavicle cluster of nodes that the chemo was not controlling so she has had a series of cyber knife tx to try to eradicate the mass.
Luck to all,
Ev

StephN · 08-13-2014, 11:01 PM

Evlin -
I have not noticed a mention of DES on this board for a while. Our founder, Christine, was a DES baby!

If you do a search for DES here, you should come up with a thread that was quite revealing as to how many of the members here had heard of that bad drug and how many of their mothers had been given it.

We have also talked about how many of us were in the mosquito sprays or followed behind the trucks spraying our neighborhoods. Also talked about suburban housing developments we live in that turn out to be where mines and other pollutants and poisons are found deep in the local soil.

Each of us seems to have been exposed to various toxic substances early in life.

Sending positive, healing wishes for your daughter.