Thoughts on Living Proof - Page 2

rinaina · 10-20-2008, 01:27 PM

As everyone on here, the movie touched me and I cried. I am so grateful for dedicated and devoted people like Dr Slamon who literally saved so many lives. Also so grateful to Joe and Christine for their dedication in helping so many and for working so hard in order to make this website what it is today. I feel fortunate to have been diagnosed early and at a time where herceptin was available for me. I am sure there are many to thank for this, many unsong heroes but thank you to those we know of.

Sherryg683 · 10-20-2008, 08:53 PM

Geez, how many times did I cry. This mans determination was amazing and I really feel like I would love to meet him and shake his hand. How awful it had to be turning down these women who were begging for their life due to rules and regulations. I can't imagine. I am so grateful that if I had to get HER2 it was at this point in time. It does make me wonder though how many other possible cures are being held up by red tape, it seems like it takes forever to get things approved that could save someones life...sherryg683

Soccermom · 10-21-2008, 07:18 AM

I'd also like to thank anyone who involved in the original trials, and light a candle for those who were not able to continue in the trials and left us...
Marcia

RobinP · 10-21-2008, 07:47 AM

Great Moving Movie. I Cried A Lot, Just Like I Did When I Read The Making Of Her2.

fitztwins · 10-21-2008, 05:08 PM

I watched bits and pieces of the movie. It was hard for me to watch at first. I was lucky to get herceptin back in 2005 for 1 year.

I was just dx with mets in June of 2008. I was hoping that Herceptin knocked the crap out for good. It would be my miracle drug since I was IIIC. Not giving up hope that it still may. I guess almost 3 years of NED was a great ride.

It broke my heart when the one woman was begging for the next trial. I felt like that was me. I was so desperate for more after I finished Herceptin. I wanted the new vaccine. I didn't push hard enough.

madubois63 · 10-21-2008, 11:01 PM

fitztwins - In 2000 (my first diagnosis), I was stage IV but did not get Herceptin. In 2004 (second), I got Herceptin (along with carboplaten and taxotere). It worked wonders for me, but unfortunately the carbo induced leukemia. At that time, I was NED for bc and stopped all bc drugs except Femara. I did my leukemia thing (lots of other chemo's and a bone marrow tranplant). I am now leukemia free, but the bc came back last November (third time). I am back on Herceptin without any chemo and the bc is now half the size and shrinking as we speak!! I hope it works as good or better for you this go around. We have Tykerb to add if need be. I want the vaccine too, but no one will take me with my history. Keep pushing for what you want...

I knew I was going to cry (like I posted before, I kept crying every time the commercial came on). I liked the movie (Love Harry Connick Jr.). It was definetly good to see what went in to getting the drug approved. Makes me appreciate the process and the outcome more...

Love to you all

dlaxague · 10-22-2008, 06:44 AM

I second Joe's advice. Read the book. It has more facts, less skimming and inaccuracies, and plenty of real drama (as opposed to Lifetime-style drama). Although I have to say, for a Lifetime production, they did a good job and the acting was good quality. Part of me watched it with a critical eye, noting inaccuracies and emotional manipulations and the other part of me cried with along with everyone else (the shower scene was the especially moving to me).

I first read the book years ago when I was still experiencing significant Herceptin Envy. So I was eager to see how it sat with me now that I'm mostly over that. But when I went to find it, it wasn't on my shelves. I must have loaned it out to someone and we both forgot. So I went online to B&N and ordered another used copy. I think that was Saturday. I got the usual confirmation emails and had hoped it would be here by now, but the next day an email arrived saying it was not available, apologies, etc. So I ordered another from another seller. Next day - same not-available message! I'm now on my third order and so far it seems to be okay. I guess the movie has increased interest in the book significantly.

Does anyone know if any other women from the phase I and II trials are still alive? I googled Barbara Bradfield and found several links including one that showed her photo, I think at the premiere of the movie, with Bernadette Peters. And another USA today article with an entirely different woman in the photo. Odd.

And while we're talking books (at least, I am talking books). I'm about halfway through a very interesting book called "Pink Ribbons Inc.". It is not improving my mood but is validating some of my thoughts about October. It's not an easy read but it's well written and researched and is absolutely fascinating. I recommend it also.

Debbie Laxague

Sheila · 10-22-2008, 07:00 AM

Debbie
Ginger Empey is also around...and I believe still on Herceptin...she is the longest running on herceptin that Iknow of...I have met her through this group in San Antonio...she is full of spunk and a wonderful person.

ElaineM · 10-22-2008, 09:05 PM

Does anyone know where or how I can get a copy of Living Proof? My cable service does not include Lifetime.

hutchibk · 10-22-2008, 09:34 PM

You know, I had a question while watching the movie, I haven't read the book, so I only know the timeline as it was presented in the movie:

1990? - phase one trials started, correct?

Why do I consistently hear testimony from so many women that even as recently as the late 90s/early 2000s, their HER2 status wasn't tested when they were diagnosed? If they identified HER2 and were developing Herceptin even before 1990, and they were able back then to test for HER2 status, why the lag time for everyone to be tested as a matter of course? And, is everyone indeed currently tested as a matter of course?

CindyE · 10-25-2008, 09:09 AM

I just watched the movie last night as I had taped it from last week. It was so surreal watching it and hearing how Herceptin came to be. I was so touched by Dr. Slamon's dedication and how he persevered to get Herceptin approved. Now because of him and all those trials, I have Herceptin and hopefully can kick this cancer. It's as many of you have said, it was very emotional movie and truly hits home for all of us.

StephN · 10-25-2008, 01:07 PM

Hi Brenda and All -

From reviewing my copy of "The Book," the original 20 human patients to be injected with Herceptin happened about early 1991. This was the in vivo research's start.

The official "phased" trials began it looks like sometime in 1992. The Phase III trial did not take place until 1995. Then it took forever to accrue the needed number of patients. In 1996 the trial was rewritten and Dr. Slamon went "on the road" on an educational tour to get the message out to the cancer community.

On the basis of early trial results the drug was fast-tracked by the FDA in March 1998. Approval of the drug for stage IV patients happened at the end of that year.

StephN · 10-25-2008, 01:12 PM

P.S. I have heard from some of my friends who watched Living Proof with spouses, and they all were absolutely amazed at what it can take to get a successful new drug from test tubes to people. The hubbies were very struck and cried.

One friend said her husband asked her, "Why are we watching this?"
She told him. "Because this is LIFE, and knowing these things will help us to relate to our friends with cancer even better."

So, as it is being rerun, even more people will stumble on to it and maybe these people will know to test for HER2.

hutchibk · 10-25-2008, 01:27 PM

Thanks Steph, for the timeline... so, if Her2 had been identified back in at least 89, 90, 91, why weren't women readily tested as a matter of course until the early/mid 2000s?

tdonnelly · 10-25-2008, 01:49 PM

Hi HER2 Family,

I watched it twice and was so proud when I saw Joe & Christine.. I too am grateful for all involved in the making of Herceptin. My first thought was My Herceptin was CLEAR not YELLOW ? Why is that ? I am glad that Revlon put forth the monies however I still am very concerned about all the chemicals we use as women whether cosmetic or household. Has Revlon ever published accurate records of products causing Cancer and if so are we privy to such information.

I have always used Revelon, Maybelline & CoverGirl products but I have HER2+ Invasive Ductal Carcinoma and continue fighting for my life everyday. I have two daughters and am doing my best to look for Answers for them.

Take Care.
Tamara

rinaina · 10-28-2008, 07:38 AM

Dear Dr. Slamon,
My husband, children and I want to thank you for your devotion and dedication to the years of work you did in regards to Herceptin. I was diagnosed with Her2 positive breast cancer in March of 2006 and was fortunate to receive a year of Herceptin treatments from September 2006 through September of 2007. I am sure you receive many emails like ours but I am sure one more is welcome. We have done a lot of research and the one constant was your name. We have met wonderful support people and survivors of her2 breast cancer through the Her2support.org site as well but we would have felt remiss if we didn't extend a sincere thank you to the doctor who made it all possible.
I was very fortunate that my cancer was found early in my yearly mammogram, (something I have never missed since the age of 35). I was stage 1 node negative and estrogen and progeston negative. I was also fortunate that I qualified for treatment with Herceptin. I am now a 2 1/2 survivor/thriver and look forward to a very long and healthy life without cancer. We have thanked my entire medical team and just wanted to extend a sincere thank you to you for your work with Herceptin.

Sincerely,
Ina and Michael Schneiderman
Jill and Eric Helfand
Brad Schneiderman

Hello:

On behalf of Dr. Dennis Slamon, I thank you for taking the time to email him and share your thoughts and reactions to the Lifetime movie "Living Proof." Dr. Slamon has received hundreds and hundreds of emails since the movie aired and while he is hoping to read all of them, I'm sure you understand that he cannot respond individually due to his schedule and ongoing research projects. Thank you again for your kind words. The scientists, faculty and staff at UCLA's Jonsson Comprehensive Cancer Center are glad you found the story of Dr. Slamon and his efforts to develop Herceptin so moving and inspiring. We are continuing in our quest to develop novel, more effective and less toxic therapies for all kinds of cancer.

If your have friends or family who might be interested in this story but missed the movie, they can watch the film online. Go here:
http://www.cancer.ucla.edu/Index.aspx?page=618to find a link to watch the movie online.

Thank you again.

Kim Irwin
Director, Media Relations
UCLA's Jonsson Comprehensive Cancer Center
Eli and Edythe Broad Center of Regenerative Medicine and Stem Cell Research at UCLA
Office: (310) 206-2805
Pager: (800) 233-7231, PIN # 93533

ElaineM · 10-28-2008, 03:40 PM

Aloha,
Does anyone know where or how I can get a copy of Living Proof on DV? I am still looking. I can pay for postage if someone can help me with this. Private message me if you can help.
Mahalo (Thank you)

rinaina · 10-28-2008, 04:08 PM

Elaine, read my post above yours and there is a link to the movie, "Living Proof" so that you can watch it online. Hope this helps. It works...I tried it.
Rina

tdonnelly · 10-29-2008, 08:23 AM

Christine & Joe & HER2 Friends,

What color was everyone's Herceptin Mixture? As I posted earlier that my one year protocol was a clear mixture/every 3 weeks/ approx. 17 treatments in all.

My first chemo packet was not prepared properly and caused me serious side effects. Although I reported them in writing to my original Oncologist the hospital where I have received all my treatments does not follow through and is under investigation for serious Medical Ethics relating to Conduct & Procedures.

I had two Aunt die of Cancer and witnessed both of their reactions to Chemo Mixtures both Standard and Trials. Meyer Medical -went Bankrupt and All records in some Storage Junk Box that no one can locate or have access too. In Illinois we have a very Serious Problem for All Medical procedures and care.

Our family members and Sisters here die of Breast Cancer, most probably have not had an autopsy performed at the time of their death and any medical mistakes or errors are buried with them.

Take Care All and please think about what I am saying here today. Breast Cancer is at Epidemic proportions with alot of money being made and for over 25+ have no concrete Answers or Cure...................
Tamara
HER2+ Invasive Ductal Carcinoma 10/2006

ElaineM · 10-29-2008, 11:39 AM

Hi Rina,
Thanks for the tip about watching Living Proof online. However, I think my computer is too slow to do that. I tried many times to either watch it or download it without success. That is why I have been trying to get a DVD copy of the movie. I can bring it to a friend's home or watch it in the doc's office. They have portable DVD players for patient's use.
Take care.