HER2 Support Group Forums - View Single Post - Am I the only cynic re drug companies and cancer?

StephN · 06-04-2007, 11:11 AM

Dear Grace -
I knew posting about Sandy's passing would have the effect of putting mortality square in the face of some here, and I tried to word a horrible post as gently as I could. Grieve in your own way.

What I want to respond to you is that without those few months of "extra" survival, our drugs would not get approval to continue trials. The FDA has a big grip on all that and needs what they call solid proof that there is reason to go forward with a drug. Take the example of the prostrate cancer drug PROVENGE, that is in trial and developed right here in Seattle. The maker Dendreon is less than 2 blocks from our store and many of the employees are our customers. So, we have been getting all the inside dope on the FDA slowing their approval process and the stock price dive that resulted. The backlash was huge.

If you ever have the chance to read the book "The Making of Herceptin" you will understand just how close we are to never getting this drug out of a tiny lab and into some real development and use. When I was diagnosed stage IV this site did not exist. I had no one to look to except stage IV women at my cancer center and most were not doing well. I was desperate to find some HOPE somewhere! When I read that book and learned that there actually WERE some complete responses in women as sick as I was I had something concrete to hang my hope on. I felt encouraged to go buy some new hats to cover my again bald head! A small thing, but it was BIG for me at that time.

I was number 6 enrolled in a new trial for hard to treat aggressive mets. There was no data. I felt like I was stepping into an abyss of uncertainty. Herceptin was still new and I only got it then being stage IV. Really I was in God's hands and He was kind to me. In my case those few months turned into over 5 years so far.

It is not a perfect system, but without trials and people like me who get a chance to set a precedent, where would we all be?? I have learned to put the blinders on as far as the business side of the drug company world goes, otherwise I would spend too much valuable energy very annoyed by all that.

06-04-2007, 11:11 AM	#7
StephN Senior Member Join Date: Nov 2004 Location: Misty woods of WA State Posts: 4,128	A leap of faith ... Dear Grace - I knew posting about Sandy's passing would have the effect of putting mortality square in the face of some here, and I tried to word a horrible post as gently as I could. Grieve in your own way. What I want to respond to you is that without those few months of "extra" survival, our drugs would not get approval to continue trials. The FDA has a big grip on all that and needs what they call solid proof that there is reason to go forward with a drug. Take the example of the prostrate cancer drug PROVENGE, that is in trial and developed right here in Seattle. The maker Dendreon is less than 2 blocks from our store and many of the employees are our customers. So, we have been getting all the inside dope on the FDA slowing their approval process and the stock price dive that resulted. The backlash was huge. If you ever have the chance to read the book "The Making of Herceptin" you will understand just how close we are to never getting this drug out of a tiny lab and into some real development and use. When I was diagnosed stage IV this site did not exist. I had no one to look to except stage IV women at my cancer center and most were not doing well. I was desperate to find some HOPE somewhere! When I read that book and learned that there actually WERE some complete responses in women as sick as I was I had something concrete to hang my hope on. I felt encouraged to go buy some new hats to cover my again bald head! A small thing, but it was BIG for me at that time. I was number 6 enrolled in a new trial for hard to treat aggressive mets. There was no data. I felt like I was stepping into an abyss of uncertainty. Herceptin was still new and I only got it then being stage IV. Really I was in God's hands and He was kind to me. In my case those few months turned into over 5 years so far. It is not a perfect system, but without trials and people like me who get a chance to set a precedent, where would we all be?? I have learned to put the blinders on as far as the business side of the drug company world goes, otherwise I would spend too much valuable energy very annoyed by all that. __________________ "When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau Live in the moment. MY STORY SO FAR ~~~~ Found suspicious lump 9/2000 Lumpectomy, then node dissection and port placement Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR - Adriamycin 12 weekly, taxotere 4 rounds 36 rads - very little burning 3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED! 2003 & 2004 no active disease - 3 weekly Herceptin + Zometa Jan 2005 two mets to brain - Gamma Knife on Jan 18 All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying Continue as NED while on Herceptin & quarterly Zometa Fall-2006 - off Zometa - watching one small brain spot (scar?) 2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava 2008 - Brain and body still NED! Port removed and scans in Dec. Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011 STILL NED everywhere in Feb 2014 - on wing & prayer 7/14 - Started twice yearly Zometa for my bones Jan. 2015 checkup still shows NED 2015 Neuropathy in feet - otherwise all OK - still NED. Same news for 2016 and all of 2017. Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.