IT Herceptin needed in Canada
 

I watch with so much interest the IT Herceptin threads with so many success stories and I am so happy for all of you that there is an answer to this ugly threat. This time I was hit directly. My last head MRI showed that the brain disease I was trying to control since Jan 2014, came back more aggressive and also went to the leptomeningeal area of the brain. I know I am in a deep trouble and have to move fast.

I am looking to get IT Herceptin, and if possible to get it in Canada. Yet, there is no trial for IT Herceptin I could find, I am still hoping that someone might give me some more information. I know about the other trial sponsored by Western University from Chicago, with all the other sites...

I have followed the previous threads (Paul, Mario - great, great job for passing on the information and fighting for your lovely wives!). Paul, I emailed you about 1 year ago to find out more about Nina's treatment and how it works, just then, my brain disease was not meningeal but deep brain mets, now I need to handle them both. I don't think TDM1 helped with my deep brain mets (as a new study suggests) but worked outside the brain.

Health Canada and my private insurance does not cover any treatment in US, so it will be challenging with IT Herceptin as it might be a long term treatment if it works.

I need all the help in the world! Please help with information if you have it....

Hugs to all of you! Cristina

Re: IT Herceptin needed in Canada
 

Cristina,
I'm so sorry to hear your news and I wanted to reach out to you. I know this must be a very scary time for you. Plus you have a little one! I don't have any knowledge of trials in Canada, but I really hope someone responds here or PMs you. I sincerely hope you find a trial near you or can you apply for compassionate use by contacting Genentech directly? If you can, please keep me posted on how you do. All my best.

Re: IT Herceptin needed in Canada
 

Can't help directly, but thinking of you and I am sure some of the veterans of IT Herceptin will chime in with more concrete suggestions. Living in Australia, I know the same problems would arise, so good luck!
Best wishes.... Pam

Re: IT Herceptin needed in Canada
 

Karina,
Sorry about not getting back to you earlier. I have spent 67 of 77 weeks on the road for work. The argument with your doctor should be that Ommaya reservoirs are commonly used for the treatment of brain cancers, and that Herceptin is the primary drug for your lesions. Therefore IT Herceptin should be approved for use. Tell your health care team you want to start at 40 mg per week for four weeks to confirm that there are no issues, and then you want to go to 1.6 mg/kg weekly for 16 weeks. This is similar to the protocol that will be run at the University of Southern California for Perjeta that should be opening soon. PM again today. I am in the office for at least two more weeks and can spend time getting you help. On the PM, please send the cancer center and doctor. I am not sure if I can get this done, but I will try.
RolePaul

Re: IT Herceptin needed in Canada
 

Wishing you the best. I am on IT Herceptin and had to travel from South Dakota to Austin to get it. Luckily my daughter lives 3 hours from Austin so I live with her. Like you I was frantic! But don't give up I believe that I was led to where I am - it wasn't just chance. Believe that you will find your hope as well.

Re: IT Herceptin needed in Canada
 

A quick update for ladies in Canada looking for IT Herceptin...
I was not successful in my quest to convince my oncologist to treat my brain with IT Herceptin. It seems that nobody does it in Toronto and there are no trials in Canada. I will continue trying...

Re: IT Herceptin needed in Canada
 

Keep trying - call every onc in phone book if u have to. Dont give up!!

Re: IT Herceptin needed in Canada
 

You might also want to ask your oncologist about getting into one of the ONT-380 trials. While the one being run out of PMH has previous TDM-1 as an exclusion (which seems odd if the TDM-1 is current, tolerated and working) there are two other trials that you may be eligible for and, with any luck, since PMH is already administering ONT-380 as part of a trial perhaps you will be allowed to receive your treatments there. I don't know how much of a long shot it is, but it's worth asking. http://www.oncothyreon.com/clinical_trials/ont-380.html

Re: IT Herceptin needed in Canada
 

Thank you! I don't qualify for the Neratinib + TDM1 trial from PMH because I have already been treated with TDM1 and I had progressed. But I looked at the trial from Dana Farber with Neratinib and Herceptin and I would qualify to something like that (to treat the deep brain).
However here comes the question: Can someone from Canada be part of a trial in US and do the treatments in Canada (this way most of the procedures would be covered by OHIP)? From the drug company perspective I am guessing would not be a problem.... but who knows?

Re: IT Herceptin needed in Canada
 

A friend of mine in Toronto was part of a trial in Detroit. The only out of pocket costs she had was travel to Detroit periodically.

-Laura

Re: IT Herceptin needed in Canada
 

Karina, I am in Canada too. My sister in law went outside the country to UK for cancer treatment (eye cancer, actually) and she learned that Health Canada's policy is to reimburse you on your return, whilst giving you no indication ahead of time, prior to your committing to that treatment. But they regularly reimburse cancer patients upon their return.
Good luck.