Toward Patient-Centered Drug Development in Oncology

[Hopeful]

From the NEJM: http://www.nejm.org/doi/full/10.1056...4649?query=TOC

Reccomended reading for anyone who has taken a cancer drug.

Hopeful

['lizbeth]

Yes! Someone heard me! This echoes what I've been trying to say.

Someone new comes on the board, I recommended that they look into a clinical trial with a less toxic treatment option, or examine a different option with 4 chemo treatments instead of 6, or that adds an additional treatment.

Then I quickly get over ruled by the group that says I did TCH, you should do TCH "its doable". Of course most will go with the crowd.

I also heard you should talk to your doctor, because they don't want the new person taking my advice to look into a particular treatment option. Unless the board participant doesn't like a particular doctor's opinion. Then it goes back to the TCH," its doable."

I was joking earlier when I posted "I have seen the enemy, and it is us!" But in reality it is true on this board.

Many of us are waiting up in the Ivory Tower for our knight in shining armor to save us from cancer. We get excited when we see new discoveries. Reality is most of these will never make it out of the laboratory to the patient.

We can simply come down out of Ivory Towers. We can stop clinging to false beliefs about our cancer treatments. We can work together as a group to move treatment forward.

Consider this point:

We just lost our Jessica (JML) who was an amazing Stage IV for 11 years. Her sister works at Genentech. We have seen the amazing videos with both of them. Genentech (Roche) has joined with Immunogen to produce TDM1 (Kadcyla). We've heard amazing things about TDM1 from Phil and the stage IV board members. All of us celebrated the approval for stage IV breast cancer.

Then we get postings from new members that they could participate in a study with Kadcyla for early breast cancer. Yet the collective her on the board seems to insist on TCH.

What, are we nuts? Someone has an opportunity to receive a drug that has the potential to be more effective with less toxic side effects. We board members should not be talking them into standard of care. We should encourage them to read everything about the treatment and talk to the clinical trial nurse and doctors supporting the study, before making a final treatment decision.

There seems to be a false belief that cancer patients must suffer to survive cancer. Science is busting their butts to get us better treatment options. Yet clinical trials have difficulty accruing enrollments.

TDM1 has already been proven in Stage IV trials. Wouldn't it be amazing if it was added to early breast cancer as standard of care? I think some of us need to get out of the way of progress, and let it happen.

Okay . . . stepping off my soap box now.

[AlaskaAngel]

AMEN to THAT.

THANKS!

-Alaska Angel