Neratinib clinical trials
 

Daughter's biopsy indicates neratinib might work for her. Anyone doing a trial? The one her onc recommended is in St Louis. Wondering if she could find one closer to her home in Florida. Thanks for any information you might share.

Ev

Re: Neratinib clinical trials
 

Hi Ev,

Here's a thread on Neratinib: http://her2support.org/vbulletin/sho...ight=neratinib

Your daughter's doctor/nurse/navigator/hospital should be the one to locate the available trial nearest to her.

Re: Neratinib clinical trials
 

Thanks Jackie,
All information is welcome. Seems to be a tough drug but many of them are tough.
As an RN my inclination is to do as much research on my own that is possible. Research helps confirm information given us by the oncology teams - or not.
Oncology offices are busy places with many patients.
Usually family members have only one patient to be concerned about and to advocate for and that gives us more time.
Thanks much,

Ev

Re: Neratinib clinical trials
 

Evlin

Neratinib is basically like Lapatanib. The main side effect is diarrhea. There are other side effects, fatigue and even thrombocytopenia, but it should be less harsh than iv chemo. This isnt true of all oral oncology drugs. Read the side effects of Mekinist, Xalkori and Zelboraf.

Neratinib bonds more strongly to the drug active sight of the Tyrosine Kinase Enzyme. The cancer cells are smart. They make one amino acid change and the Lapatanib cant bond to the drug receptor sight anymore. I dont know the exact mutation involved with Lapatanib. In melanoma there is a switch from a valine amino acid residue to glutamate. In Chronic Myelogenous Leukemia there is a switch from a threonine to IsoLeucine. This one amino acid switch makes Gleevec ineffective. This is where Iclusig is effective

The dose of Neratinib is 240mg daily. It seems the most obvious side effect is diarrhea. When they were doing double blind studies with Tykerb (Lapatanib) there was a problem. The Lapatanib diarrhea made it obvious who was getting the active drug, and who was
not.

Paul

Re: Neratinib clinical trials
 

Thank you Paul for posting this. It makes me realize how much progress has been made with cancer research.

Ev, I hope this is the magic bullet for your daughter. I am of the same mind as you - learn as much as you can.

I ended up flying for my vaccine trial. I was very committed at the time, yet it was quite the effort to travel frequently.

Still I was recovering from cancer treatment and each trip became easier. The shots still wiped me out each time. But I bounced back pretty fast.

Maybe it will be similar for your daughter - that she will grow in strength and health over the coming months. I certainly wish this for her.

Best wishes for a great outcome.

Re: Neratinib clinical trials
 

Elizabeth

Im mentioning this only because you love to do research. I went back to my notes on Neratinib and found what the mutation is. Its called the T790 and does involve a single amino acid switch. A normal Threonine amino acid residue is exchanged for a Methionine Amino Acid residue. This switch makes Lapatanib inactive.

Ill tell you what I find interesting. Both Lapatanib and Neratinib hit two different proteins, the Epidermal Growth Factor Receptor Tyrosine Kinase and the Her2Neu Receptor Tyrosine Kinase. When you get Lapatanib resistence the amino acid change in both targets is the same: A Methonine residue replaces a Threonine. It is as if the cancer cells could think.

Paul

Re: Neratinib clinical trials
 

I was on Neratinib with Temsirolimus for about a month. Although my mutation testing said both drugs would/could work for me, they did not. This example lends credence to the fact there is still much to learn about genomic sequencing/testing for the purposes of targeted therapies.

I have to be honest, the drug combo was the absolute worst I've ever been on, and one oncologist (HER2 specialist at Dana Farber) told me he was skeptical as to whether the drug would even be approved due to the side effects.

The GI issues were more than severe; they were unhuman--for me. I had progression within the four week period. One other person I know who was on it found it more tolerable after about six weeks, when the GI issues resolved. She was stable, but never NED, for quite some time and then progressed. My oncologist told me no one that she knows of achieved NED status on it. Stable-at best. I am treated at MSKCC-New York City.

This is what I know, have heard, have experienced. I wish you a much better chance with it.

Karen