Kadcyla/TDM1 CELEBRATION @ Genentech:) - Page 2

Joan M · 03-02-2013, 09:13 AM

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

CoolBreeze · 03-02-2013, 01:03 PM

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.

CoolBreeze · 03-02-2013, 01:20 PM

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.

Nancy L · 03-02-2013, 02:26 PM

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.

CoolBreeze · 03-02-2013, 03:09 PM

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.

phil · 03-03-2013, 07:58 PM

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$

CoolBreeze · 03-03-2013, 08:33 PM

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.

phil · 03-05-2013, 11:31 AM

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.

CoolBreeze · 03-07-2013, 02:24 AM

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

.

NEDenise · 03-07-2013, 05:36 AM

That's GREAT news, Ann!

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

phil · 03-07-2013, 08:39 AM

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