IT Perjeta? For those with Brain and/or spine involvement
 

For those with brain or spine involvement, there is an unsubstantiated rumor that IT Pertuzumab will be available at therapeutic dosage before July 2013. This will use the Nina Dosing that has proved successful with my wife. I heard it will not be MD Anderson as the primary cancer center, but there will be multiple centers across the country. Genentech has decided to fund the study after considering input from knowledgeable public comment. I do not know what that might mean, but I can guess.

We had a false scare on 4/15 that we were told was not an issue the next day. A very uncomfortable 24 hours. All I can say is we understand how each of you feels with bad news. We just simply get up and start fighting again. As Nina says "You are the source of eggs in this fight, but I am the source of the bacon!"

We are going to stay on IT Herceptin until we get news that it has stopped working before we change. Right now, Nina is perfect (okay terrified, jumpy, and a bit more bitter after this last call) but able to do almost all she did before the disease struck her in the autumn of 2009 and went to the spine in December of 2011. She drives better after all of this because life is so much more important. I am glad to have her around and glad to help any who need the support on this forum.

Good luck to all of you who read this forum. Know that there are others out there struggling just as you are, and there are people out there willing to fight for you to get better.

RolePaul now in Boulder Colorado

Re: IT Perjeta? For those with Brain and/or spine involvement
 

Rolepaul, I'm glad the scare was false. Much love to you and Nina.
Thank you for sharing this info. I will discuss with my MO on Friday. I'd travel far and wide for this, if it wasn't offered in Canada.
Cheers! Jill

Re: IT Perjeta? For those with Brain and/or spine involvement
 

Let me see if Genentech will agree to do something for you. Genentech senior management has been very nice lately.

Re: IT Perjeta? For those with Brain and/or spine involvement
 

REALLY? WOW.
Oh wow, what would I need to do, I wonder. I have no clue where to start.
Thanks Mr. Paul. :)

Re: IT Perjeta? For those with Brain and/or spine involvement
 

I will publish info as soon as I can officially. I will see if they are going to Canada with this. I think they are going to France, but not sure on when. I was told to keep some things under wraps.

Re: IT Perjeta? For those with Brain and/or spine involvement
 

Ok, great!
Wherever it is, I'll go to it!
Plane tickets to the States or France, sign me up!
:)

Re: IT Perjeta? For those with Brain and/or spine involvement
 

thanks again as always, get my #2 of 42 mg this week, the herceptin is coming from my rx part of health insurance, the will send enough to due weekly. They must already get some kind of crazy discount on these drugs, my tykerb, and Herceptin, orders say say copay adjustment program.

I am still on 1 mg decadron still a little headache, but driving self around, use a walk if no cart to go through stores, and getting ready for summer here in the desert. I will too probably stick to the herceptin, IT and IV, along with my Tykerb for now. Save it for future arsenal. after the 4th 42mg , I think if all goes well should be able to go up another 21mg.x 4, as long as scans are stable, then on to 1.5mg/kg.


Take care and prayers for healing and those who are seeking better options than the "old school" stuff.
Darita

Re: IT Perjeta? For those with Brain and/or spine involvement
 

Darita, I'm up for new school too!!! :)

Re: IT Perjeta? For those with Brain and/or spine involvement
 

My daughter Susan was doing Perjeta IV for whole body treatment, but progressed. Some bone increase and more involved lymph nodes.
Doubt if this would then be of benefit intrathecally. She is now on the Kadcyla (tdm1). has had but two treatments so don't know yet what benefit she might get.
She has reached the stage with the Depocyt that it is monthly now and all other weeks she gets the Herceptin. She had some bad days battling chemical meningitis. but steroids and anti-nausea meds helped.
Some improvement in the spinal cord over all but a slight progression in the caudal area. Might need that radiated. Will do another MRI to help decide.
Glad Nina continues to do well. That also helps give us hope.
Ev