Any new Tykerb Clinical trial

[Rupali]

Hi all,
As you might recollect from my last posts that my insurance company declined Tykerb. Also what happened is that my LVEF came to be 45% so I am now in the waiting stages for the LVEF to go back.
I am Stage 3A and want to take Tykerb on a preventive basis.

One thing the oncolcogist told me is that if there is a new clinical trial that comes out in which they are giving Tykerb to patients who had had Herceptin then she could fight with insurance to give it as off label.
Does anyone of you know of any such new upcoming clincial trials for Tykerb.

Michele, how are u managing with the diarreah and are you still taking Tykerb.
Another question I have is that how much time are the Stage 3's taking Tykerb.

DOes anyone know if in Canada Stage 3's can get Herceptin from the Government Health system.

Regards,
Rupali

[Kat]

Hi Rupali! My name is Kat, and I've yet to even complete a profile, but wanted to respond to your post. I searched vigorously for Tykerb trials for those of us who have already had Herceptin, and are without mets. I guess this would be Tykerb as a preventative drug. I did not have luck. There is a clinical trial at Dana Farber w/Tykerb, but believe it is for those who have not had Herceptin. Best of luck.

[Joe]

There are currently 42 trials for Tykerb and Breast Cancer:

http://www.clinicaltrials.gov/ct/search;jsessionid=66B6A064ABE252CF720307B71125995D ?term=tykerb%2C+breast&submit=Search


Regards
Joe

[Rupali]

Thanks Joe.
I found the trial caled ALTTO which corresponds to my situation

[chrisy]

Rupali, in the clinical trial setting, you may still run into issues with the LVEF. The trial I'm in required I think over 50. Once on the trial (and off the Herceptin), however, my EF did increase - so if you get in it may be easier on your heart. Just my experience.

[Rupali]

Hi Chrisy,
How did u guess that I was having LVEF issues. My LVEF is at 45 and that means I am not able to start Tykerb, even though my husband is ready to pay out of pocket.
I do regular yoga, walk and take 400 mg COQ10 but still it went down.
I am working nowdays to bring the EF back.
At the same time my husband and my onc is going to try to get me Tykerb offlabel based on the ALTTO clinical trial.
Is there anyone on the board taking Tykerb at LVEF at 45?

Regards,
Rupali

[chrisy]

Rupali,
It wasn't hard to guess - I'm in a clinical trial with Tykerb and that is one of the (dis)qualifiers and before entering the trial and periodically I had to have ECHO's.

While I was on Herceptin, I had started to really work on trying to bring it up, doing the same things you are, CoQ10, exercise, and of course some good Omega 3 and magnesium. It seemed to help for me so keep up the good work. Once on the tykerb the EF continued to get better, so hopefully you can get over the bar to get the Tykerb things may improve.

Don't forget, the cancer med won't do you much good without a beating heart!