Thoughts on Living Proof

[DonnaD]

I was wondering what everyone thought of the movie last night? We don't have cable but are on the road in the RV and were able to see it. Talking to Christine, I knew there was a surprise in store for us. How wonderful to see her and then both our fearless leaders on the commercial. I can not put into words the gratitude I have for Christine and Joe. I look back over the last 2 years of my life and can't believe the knowledge I have gained from this site. I am so grateful for the friendships I have found here. I now have a true sense of sisterhood!

Now onto the movie. I was really amazed at all that went into getting Herceptin available to us. I am indebted to Dr. Salmon and all our sisters that went through the early trails for us. I see Herceptin as our miracle treatment.

I was unable to record the movie last night but ask a friend at home to record it for me. If available I would love to share it with my sisters outside the states that were unable to see it. I went to sleep last night with tears in my eyes and a smile on face. We all should be grateful and feel blessed to have Herceptin available to us. Miracles do happen!

Donna

[hutchibk]

I am in the middle of watching it right now... it is kicking my butt emotionally. It's weird to watch "our lives" on TV, but it is making me weirdly proud of being HER2 +... I am mad at Genentech right now, but I know I won't be by the end of the movie. Can't wait to see Joe and Christine.

Check this out and how absurd this is... http://www.calendarlive.com/tv/cl-et-proof18-2008oct18,0,104262.story

Oops, it's back on. More later.

[sassy]

I had read the book shortly after being diagnosed, but seeing it portrayed in the movie really made me appreciate the true miracle that we have benefited from. I can't help but think that many of us would not be here today, if not for the work of Dr. Slamon and the people who helped to finance his research. The movie is a good story for anyone--but for us--it is the story of our LIVES.

[hutchibk]

Just saw Joe and Chris - now I can't stop crying. I love you guys!

It's on again tomorrow (Monday) night at 9 ET...

[Mary Jo]

Thanks Brenda for the time it's on tomorrow. We DVR'd it and watched it last night. UNFORTUNATELY, since it was DVR'd we fast forwarded it through the commercials so I did not get to see the special commercial. So, I now have the DVR set up for tomorrow night so I can watch the commercials.

I loved the movie and was very emotional through out it also. My husband loved it too and today when we went to Walgreen's and I was looking for some fingernail polish my husband said "buy Revlon!"http://her2support.org/vbulletin/images/icons/icon7.gif

Anyway, it was awesome and I had no idea of all that went into getting this miracle drug approved. I, too, feel indebted to Dr. Slamon, Lily "T" and Revlon for all their unselfishness. What a diligent, loving, compassionate, caring soul Dr. Slamon is. His wife as well.

Truly I can't say enough about what I watched and how I feel. I feel blessed - I feel lucky - I feel grateful and I am so happy I am alive and well.

Thank you God for sending us a Dr. Slamon.....We are thankful.

Hugs to all my "sisters"

Mary Jo

[hutchibk]

When I had my pic taken in front of the Yew Tree (Taxol tree) in Monte Carlo this summer (that was given to the principality on Monaco by Lily and the Tartikoff foundation for their ongoing support of breast cancer research) - I had NO IDEA that she was instrumental in the Herceptin research. I will cherish my branch from that Yew Tree even more than I already do...

[harrie]

Oh my! Here I am running over to this site during the commercials. I didn't realize the Joe and Christine will be on the commercial! Guess I will stick by the tv!!

[harrie]

It is a very profound movie!! Tears and gratitude. I never realized all that went into having the herceptin approved and available for us now. (still not over, 20 min to go...)

[harrie]

I just saw you two on the commercial!!!!

[Joe]

The movie is based on HER2 - The Making of Herceptin by Robert Bazel. It is still available on Amazon both new and used. I highly recommend it for everyone.

http://www.amazon.com/Her-2-Making-Herceptin-Revolutionary-Treatment/dp/0812991842/ref=sr_1_1?ie=UTF8&s=books&qid=1224477479&sr=1-1


Regards
Joe

[StephN]

My thoughts went on the other thread, but more appropriate here:

That movie touched a nerve deep within me.
My hubby had planned to watch it with me as I have been "promo-ing" it to him for a while now.

So, we sat together on a comfy chair large enough to hold both of us, watching till the end.

Slight digression: In Jan. of 2002, when I was diagnosed with raging mets to liver, I did not know WHAT to do with myself. I did not know if I would live or die. I had not found this support group or any other that could help me know anything, except "the worst." While wandering in a large local book store I ran across a used copy of the making of Herceptin book. This is where I began to see that maybe the treatment I was on might work as it included Herceptin. I tried to channel those women for whom it had worked. I tried to understand the impossible! I tried to believe and have the same degree of faith that Dr. Slamon and his staff had in pushing the drug through development. I used guided imagery to help me in these efforts. I concentrated deeply before going to sleep each night. Perhaps trying to program my body to accept these drugs and fight the tumors. This was a very emotional time for me.

That book gave me some sense that I may have at least a small degree of power in a situation where I felt utterly powerless. But it still felt like Russian roulette.

I began to feel that it was practically a duty to Dr. Slamon and Genentech to be a responder and be a sort of standard bearer for others like me. Why not me???

Thus I feel I owe a lot to Robert Bazell for even writing the story, warts and all. I feel I owe a lot to Lily Tartikoff for believing in Dr. Slamon's idea of targeted antibody therapy. Dr. Slamon comes last but certainly NOT least. I have met him on 4 occasions (in public) and always thank him as best I can without embarrassing us both. I always let him know that I am "still" a living proof that he could be right. (Yes, I did use those words.)

Thus I had a real mare's nest of feelings to deal with even before sitting down to the movie. My husband had forgotten the passages I had read to him those years ago from the book. It became refreshed to him with tons more meaning. Now he really has an even better understanding of how lucky we are that I have managed as well for as long, in spite of all the setbacks.

Knowing Dr. Slamon and having heard him speak several times, I thought that Harry Connick, Jr. played a great interpretation of the good doctor. Have met Mrs. Slamon as well and her character was also well played.

[Sheila]

What an emotional and humbling show to watch...after reading the book, it was so meaningful, and what a gift to see the commercial of Joe & Christine right in the middle of the show.....to Dr. Slamon, all the women who trialed Herceptin, all who fought hard for Her2 research and to Joe and Christine who are our advocates every single day, we owe a world of gratitude and thanks. We truly would not be here without them.

When I was diagnosed in 2002, I was stage 1, and herceptin was only available to Stage IV Metastatic....so I had to wait to get mets to qualify. How lucky the women are today that get it as firstline treatment ! It has been the backbone of my treatment (with and without chemo) for 5 years, and still going!

[Jyber]

I don't have cable and was unable to see it. Does anyone know if there will be a DVD available at some point? I will try putting it on my Netflix list but if anyone knows of some other eventual source I would be most appreciative.

Update: no listing on Netflix so far (in general, you can put recently released movies on a Netflix wait list for when they are available on DVD).

Anyhow, if anyone has any other ideas, suggestions are welcome. I will try the Lifetime site.

Thanks.

[MJo]

The best part for me was seeing Christine and Joe in the commercial. I thought it was a decent movie. Don't know if it will win an Emmy, but we'll wait and see.

[SusanV]

I just wanted to say what a remarkable man, a remarkable movie, and BOY oh BOY I must have really, really needed that good Cry on Saturday night. That was a very powerful and moving movie for me to watch.

Love to all of You

[WomanofSteel]

I thoroughly enjoyed the movie. I am so thankful for Dr. Slamon's dedication. If it were not for people like him and Lily Tartikoff we would not have this wonderful drug that has saved so many. I was especially surprised to see the commercial with Joe and Christine. I was bouncing up and down and pointing to my partner and saying oOh My God! It's the couple from my support site. I was so excited and my family was looking at me like I had 4 heads. LOL My partner also enjoyed the movie and ordered the book coz it peaked her interest and she wanted to learn even more about her2 and our miracle drug. I will read it too when it comes.

[Faith in Him]

I'm feeling tremendously grateful to Dr. Salmon, Lily, Joe, Christine, all the courageous women in the trials and all of you. It also gives me such hope to know Dr. Salmon and Lily (by fundrasing) are still working towards a cure.

[mimiflower07]

i would love to see this movie, so Donna if you can extend it to us, outside the US that would be great.
i really need to see it. Just p.m me for details..i would be happy to pick up all cost getting to me.
thanks Suzanne

[schoolteacher]

The movie made me very emotional. I gratefully thank Dr. Slamon, Christine, Joe, and all the other ladies who made it possible for me to be able to have Herceptin for my treatment.

Amelia

[Patb]

When I finished chemo in 06, my oncologist said I might
get Herceptin if approved for Stage one, it was, I took
it and thank God every day and all the Drs., sisters before me, and the drug companies and supporters that
pushed this through. To have to fight for a drug that is
not available is a scary prospect and I wonder now what
the news is on compasssinate care drugs?
patb

[rinaina]

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]

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]

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]

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

[fitztwins]

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]

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]

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]

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]

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

[hutchibk]

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]

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]

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]

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]

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]

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]

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=618 (blocked::http://www.cancer.ucla.edu/Index.aspx?page=618) to 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]

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]

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]

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]

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.

[Joan M]

Just want to add that I saw Living Proof on Saturday night while in the hospital. It was the day after my surgery and it really lifted my spirits.

The color of my mixture has been mixed. When it was Herceptin, the color was yellow, but now as it's trauzumab, it's clear.

I understand that's just a manufacturing distinction between the brand and generic drugs.