Kadcyla/TDM1 CELEBRATION @ Genentech:)
 

RING THE BELL TO CELEBRATE!

I just received a phone call from my sister, a physician/scientist bio onc recruiter @Genentech
as they were ringing a bell company wide (@2pm pst) to celebrate the long awaited arrival & approval of TDM1 aka Kadcyla!
She called me earlier today to tell me to be available so she could share with me the sounds of the bell ringing, and lots of hoots & hollers & whooops mixed in:)
It was so exciting & I was whooping along with them!
And it was such a wonderful feeling to know that they celebrate this success as much as we do.
Then someone gave a speech, which I couldn't hear very well, so I let her go to listen & enjoy.

I <3 Genentech!

Jml

Re: Kadcyla/TDM1 CELEBRATION @ Genentech:)
 

I also love genentech. And as I told a tdm1 team during a visit there a few years ago: now get back to work!

People will think what they will about big pharma and biotech, but the ont thing that has always impressed me about genentech people (and I've met MANY) is they all have a passion that goes further... They have a personal agenda which is to defeat cancer, or whatever they are working on

Re: Kadcyla/TDM1 CELEBRATION @ Genentech:)
 

already can't remember the name...
CyKadia?
I mean---dude--they spent the dough on consumer testing but forgot to focus a focus group on the name? RUNdmc, TDM1, LMNOP, --Kadcyla--? Is it the TomKat, the BeyonJ, the Bennifer, the J-Lo of the down lo and I'm missing the point?
I know, a rose by any other name....
Really happy they are ringing the bell! Super happy it's approved, no matter that I'm disappointed in the name!

Re: Kadcyla/TDM1 CELEBRATION @ Genentech:)
 

I also love the people at Genentech. Mark Slikowski, who formulated many of the drugs we are on now, is an amazing man who truly cares about the end user: us. I listened to a speech given by a VP recently and he remarked, with held-back emotion in his voice, about how Mark said, "This is going to be great for patients," when they recognized the efficacy of Perjeta. I knew I was in "good people" company when I witnessed that.

Thanks, Jessica, for sharing your experience of the long-awaited approval. They should have your picture hanging in the lobby of the main building.

Love Karen

Re: Kadcyla/TDM1 CELEBRATION @ Genentech:)
 

Such a lovely post Jessica! Thanks for sharing.
Cheers Marie

Re: Kadcyla/TDM1 CELEBRATION @ Genentech:)
 

Karen I've met Mark and he not only was part of Perjeta, bu t worked on herceptin and tdm1. A wonderful man with endless passion and determination.

Flori, Sonali from genentech called me with the news Friday. I had the same reaction to the name! She said they wanted to include "ADC" as it is the first antibody-drug conjugate. The rest on the name was to make it something that could be pronounced,,if not easily remembered!

Re: Kadcyla/TDM1 CELEBRATION @ Genentech:)
 

Yes, Chrisy, that is correct. He is often overshadowed by Dr. Slamon, unfortunately. But last year, he won Most Distinguished Scientist, the most coveted award in his platform. That, for any scientist, is THE recognition. Hope you are well.

Karen

Re: Kadcyla/TDM1 CELEBRATION @ Genentech:)
 

I wish they would have name it Adcyla - that would be easier for me. Glad to know about the ADC antibody drug conjugate part, at least I understand the name bettah.

Re: Kadcyla/TDM1 CELEBRATION @ Genentech:)
 

Jessica,
Great post! I've never met any of the Genentech folks, but I feel like I love them just the same. I try to remember to pray for them when I pray for us.

And hey...those of you who have someone's ear over there...if you can work it into conversation sometime....I'd reeeeaaallly love for them to find a targeted treatment for StageIV...that crosses the BBB. I have a selfish interest in seeing that explored! :)

But, still SUPER happy for our sisters who need, and can now get TDM-1!!! Thanks Genentech!

Re: Kadcyla/TDM1 CELEBRATION @ Genentech:)
 

I'm also very excited about the approval...now waiting for Health Canada. And good to know I wasn't the only one that didn't like the new name! But thanks for the explanation Chrisy, that does help to explain it.

I've been part of the EMILIA trial in Toronto, and have just received my 42nd infusion...WOW! And FYI, the Toronto Star (newspaper) is publishing a story about Antibody-Drug conjugates, including TDM-1 (I don't think it'll ever be Kadcyla for me) likely on Sat March 16. I was interviewed yesterday for this story, so it might include a one-line quote from me ;)

Re: Kadcyla/TDM1 CELEBRATION @ Genentech:)
 

This entire thread has just made me smile...and the smiles for me have been too few on Her2 lately with the rough times we have had. So glad you shared the celebration and the reason for the name! Flori, You are too funny! I guess I will always think of it as TDM1...thanks Genetech...bring it on!

Re: Kadcyla/TDM1 CELEBRATION @ Genentech:)
 

I finished my 1 yr. of herceptin and came home that night to the news on TV about approval of Kadcyla and the daily paper had an article the next day. I was doing a happy dance.

Next week I am scheduled for a PetScan and hoping all is good. I haven't spoken to my oncologist since all this happened. Just wondering if the cancer comes back will I take Kadcyla? Do I just continue on arimidex for the next 4 years and is there a test to let me know is HER2 is back and acting up? I am also scheduled for echocardigram next week and have no reason to think my heart will be anything but healthy. I see my MS Specialist next Monday and hope I can now go back to a MS drug that will stop the progression of the MS. In the meantime I'm thankful we have another med in our arsenal.

Re: Kadcyla/TDM1 CELEBRATION @ Genentech:)
 

How joyful it is to log on and see all this Her-2 HAPPY DANCING going on!!!
JML please call your sister and have her send a company wide email out to all her co-workers at Genentech. Can she ask them to log on as guests and just see all their cheerleaders?!
Truly, many of us are here yucking it up, raising our kids, loving life because of their combined efforts.
Thank you so much for sharing their celebration - just see how it ripples forward.
Love Kim (from CT)

Re: Kadcyla/TDM1 CELEBRATION @ Genentech:)
 

The oncologists are happy here too.
My cousin who works for Roche the parent company of Genetech sent me an e-mail about the approval a few minutes after they got the news. Roche is happy too.
Alot of people will be helped by T DM1 -Kadcyla.

Re: Kadcyla/TDM1 CELEBRATION @ Genentech:)
 

I have found every individual Genentech employee we have talked with to be top notch . Would love to meet the team that invented T DM-1 someday. Saved my wifes' life, 27 months and counting !! NED !!

Re: Kadcyla/TDM1 CELEBRATION @ Genentech:)
 

Yes, this is so exciting! I'm still smiling. The talk is that Perjeta and Kacyla will be the gold standard for treating MBC. The Genetech bunch has really produced some life changing treatments for us Her2er's. Thank you! Thank you! Thank you!

Don't stop now . . . keep researching!

Re: Kadcyla/TDM1 CELEBRATION @ Genentech:)
 

This is exciting.

Now, how the hell do we get this drug? My doctor said he'd put me on it as soon as it came out as all chemos (seven now, plus herceptin and a liver resection) has failed me. But I had chemo yesterday and they have no intentions of ordering an expensive drug like that. A small clinic can't bear the costs. So, who here knows how I can get it?

Re: Kadcyla/TDM1 CELEBRATION @ Genentech:)
 

Hi Coolbreeze,

I am sorry that your doctor's office won't order the drug for you. Perhaps he could coordinate with a major cancer center in your area. I am sure UCSF will have it soon, but that probably is too far away for you to go every three weeks.

Re: Kadcyla/TDM1 CELEBRATION @ Genentech:)
 

Hello Coolbreeze, according to Genentech spokesman
Ed Lang:
The monthly cost of Kadcyla in the United States is $9,800. The estimated cost of a course of Kadcyla is approximately $94,000. This is based on people taking Kadcyla for 9.6 months.
When pricing Kadcyla, we considered a variety of factors including that cost of the combination of Tykerb and Xeloda (approximately $10,460 per month) which is the current standard treatment in this line of therapy and the comparator in the pivotal EMILIA study.
http://www.forbes.com/sites/matthewh...xpensive-drug/

Re: Kadcyla/TDM1 CELEBRATION @ Genentech:)
 

No chance can I go to SF every three weeks. Here's hoping a Sacramento hospital gets it soon.

Re: Kadcyla/TDM1 CELEBRATION @ Genentech:)
 

Coolbreeze,

I don't know a lot about this but it's unclear to me about your treatment center not being able to afford T-DM1. I'm under the impression that the $9,000 bill is what centers will bill to insurance and that the carrier will pay the contracted rate. However, your treatment center doesn't pay that per treatment, but only a fraction of that. Otherwise how would anybody earn revenue? Afterward, they make back the money and then some through your insurance company. Perhaps this is related to what your insurance company would pay. Maybe you should dig deeper into the costs for the parties involved.

Also, this doesn't seem to be a case like Peter Bach and Leonard Saltz at Sloan-Kettering who refused to bring Sanofi's Zaltrap into Memorial for colorectal cancer. The drug is the same as Avastin, but the drug company was charging Memorial double the amount. The problem was that the clinical trial was designed as a non-inferiorty trial, which muddied the water, and of course the powers that be at Memorial aren't easily fooled by big pharma.

I just noticed in your signature that you don't seem to be taking Herceptin. Is there a reason for that? Oncs have now known for several years that women with metastatic breast cancer whose cancer advances while on Herceptin and a chemo still do better when they keep taking Herceptin, regardless of advancing. This is a known fact, so I'm surprised that you're not taking it. That was my point in another thread about T-DM1. Not that T-DM1 is not a good drug. It is. But it was compared to a regimen (capecitabine and lapatnib, or Xeloda and Tykerb) that no onc in their right mind would ever prescribe today -- without Herceptin. If it had been combined with a Herceptin combo it undoubtedly would not have had such stellar results, even though it still might have improved PFS and OS. But now that Genentech has gotten the approval, we'll see what happens with MARIANNE.

If it were me I would ask my onc about Herceptin and ask more questions about why they can't afford T-DM1.

Best,
Joan

Re: Kadcyla/TDM1 CELEBRATION @ Genentech:)
 

I am on herceptin - have been since December 2, 2009. I will fix my sig. I keep progressing on it but they keep me on in case it's slowing things down anyway. They recently added perjeta so now I am on herceptin, perjeta and gemzar. Perjeta is usually used with a taxane but i've already had taxotere, taxol and abraxane and progressed, so he thought he'd go off-label and try it with gemzar.

I talk to my oncologist and we'll see what he says. I was talking to nurses/office managers last week. All may change after I speak to him. But, I am the first patient that has ever gotten perjeta there. They are a group of oncologists but they take medicare/medi-cal patients. And, my insurance company has been wonderful - they cover everything, including the liver resection. But for the oncologist's office I am on a "case rate" which means they get a certain amount of money for me no matter what they treat me with. So they try to stay under that amount. I don't think that they believe the new TDM1 will be affordable and they all told me I may have to go to a hospital for it.

But we'll see what the doctor says.

Re: Kadcyla/TDM1 CELEBRATION @ Genentech:)
 

I seem to be at my limit for characters in a sig. I hope that doesn't portend anything!

Anyway, I did go off after my first year but relapsed very quickly so went right back on.

Re: Kadcyla/TDM1 CELEBRATION @ Genentech:)
 

CoolBreeze,

I think I read that you live in Sacramento. I have been researching oncologists in the Roseville area in anticipation of a move back north. The T-DM1 trial coordinator in Stockton where I started my journey with T-DM1 under EAP recommended Helen Chew at UCD if I don't want to drive to UCSF where I was seen by Hope Rugo when I was first diagnosed eight+ years ago. Davis wouldn't be far for you to drive and it may be worth a second opinion if your Sac oncologist says NO. I have been told and think I saw it reported on this site that they have found T-DM1 works better on liver mets than other BC mets---even more of a reason for you to fully check it out. Best of luck. Love your blog. You report feelings that I have difficulty putting into words. Thank you.

Re: Kadcyla/TDM1 CELEBRATION @ Genentech:)
 

Nancy, my oncologist also has an office in Roseville (I think). Check out Gregory Blair. I can't recommend him highly enough, and when I told one of my nurses my goal was to live to my son's high school graduation, she said, "Well, Dr. Blair is just the guy to get you there." I have heard from physician friends that he is considered very smart and is highly respected. He's the one who recommended and arranged my liver resection, which as you know is still not done often and many oncologists don't recommend. He gave me that shot and I'm grateful. He is very much "up" on new treatments.

Anyway, I did ask him about it a month ago, knowing it was about to be approved. He said he'd put me on it as soon as it was available. Maybe he said he'd "recommend" it. They have a business to run, so I can understand if it's not affordable to get it in their office; I don't begrudge them that. But it will have to be available somewhere. I'm not strong enough now to go to UCSF regularly but could go to Davis if they have it there. That would be an "out of network" hospital for me, so hopefully, Mercy will have it.

I haven't been on Perjeta and Gemzar long anyway, I've not tolerated the gemzar too well and have had to skip a few treatments. I don't mind waiting a bit to see if I can benefit from that but at this point in my health, I think an easier treatment would be best. I have relapsing c.diff and those low white counts create a problem with recovery.

Thanks for the compliment on the blog, I appreciate it. :)

Re: Kadcyla/TDM1 CELEBRATION @ Genentech:)
 

coolbreeze , do you have ins. to pay fordrug ? if not , see if yo qualify for help from Gen. t dm-1's cost is comparable to other newer chemo /gen.combos. tyk/xel is more expensive than tdm-1. 10,000$

Re: Kadcyla/TDM1 CELEBRATION @ Genentech:)
 

Yeah, I have insurance. So far, in 3 years, I've not have one problem - even when they wanted to do the resection which is considered experimental. I think my insurance will cover it but where I'll get it is a different story. Last week, my oncologist's office manager said she wasn't ordering it. That may change when I talk to my doctor this week.

I'll hold off on finding other places until then. He'll know anyway.

Re: Kadcyla/TDM1 CELEBRATION @ Genentech:)
 

I have been extra busy past few days , the FDA Commissioner is coming to Cambridge biotech mtg next week , going to praise ' that " new" drug , " kadcyla " . Thinking about a Stage IV Rights rally, ...i may not be able to post as much for a week or two
Anyway , I encourage you strongly to get T DM-1. It has never been portrayed as a "cure ', but i feel it might very well be for some, if not many when it can be given to first dx stage iv. and soon , i hope in combos , like pertuzumab. it has had great stats all along. the folks who work w/ it know it, as do the pts who have gotten it. on the other t dm-1 thread did u see the woman from canada who has had 42 doses ! that's probably over 3 yrs , Lorraine will get 32nd dose this Thurs. 2/12 yrs they are far from alone, many do not post here. many dont know how lucky they are to have it. " my dr sent me to this clinic " from one pt we met in va.
I think Gen. picked tyk/xel because it was newest weapon against her2 at that time , 2010. tyk/xel was already proving to be disappointing. yet previous FDA admin. gave tyk early apr in 2007.
I am for testing, but i am for early appr. for special drugs like t dm-1 . In 1996, That FDA stopped Phase III trial of herceptin . This drug deserved the same tx., and now deserves full appr. in interest of saving thousands more lives. thats the bottom line on a special drug that has been tested for almost 7 full yrs already.

Re: Kadcyla/TDM1 CELEBRATION @ Genentech:)
 

Good news! I talked to my doc today and they are ordering it. I should be on it in about a month. :).

Re: Kadcyla/TDM1 CELEBRATION @ Genentech:)
 

That's GREAT news, Ann!

So happy for you! Hope this is just what you've been waiting for!
Fingers and toes crossed...
Denise

Re: Kadcyla/TDM1 CELEBRATION @ Genentech:)
 

AWESOME !! our Her2Cancer Struggle (FB) Rally Spkr, Ann M., just got news she will get it Monday , thru comp use . i have to say, i got on my knees and thanked God, she has been thru so much , trying to get pertuzumab , turned down, first try at comp use , denied, appealed , ( FDA gave some appr, which helped ), and got it ! sueellen in W. va. will finally get it next wek too . Now we pray for this powerful drug to sweep away ALL the cancer cells in your bodies.
Any Bostonians / New Englanders who want to join our Rally next Fri., march 15th , FDA Commish will be in Cambridge. details on FB , " Our Her2Cancer Struggle ", link off my Fb , philip mccartin . or e-mail me at pmccartinjr@comcast.net , The " Real Front Line " of the War on Cancer ...exciting times , the many super-responders will soon be joined by many, many more, plus those who had some progr. with t dm-1 , or reversible s/e like lower plats, hopefully who can add it back in to their current regimens. When willl This FDA support that flexible tx approach ? When will ALL her2+ Stage Iv 's get it , late 2015 ? 2016 ? ...not if We have anything to say about it