Re: Brain Met
 

Hi,
Never say never. Tykerb may not be generally available, but there may be ways to get it for your partner.

Sometimes people take out a mortgage or loan and fund the cost of these things themselves. In NZ quite a few women somehow managed to find the $50,000 it cost to make up a year of herceptin when the govt would only provide the first 9 weeks of it. That may or may not be an option.

Others have friends and relatives who chip in. I met a woman who was a single mum with no money and a seven year old son, and she had needed $17,000 worth of some cancer drug for her brain tumor and her friends all pooled together and came up with the money. (it may even have been Tykerb)

Or even communities, encouraged by their local radio stations who can choose to get people phoning in to help out, or the local cancer society may support her cause, or something.

And sometimes it is possible to get these drugs supplied on a compassionate basis by the manufacturers, there is a special name for this process, and a special way of organising it but some people manage to do it. I am sure some of the wonderful people on this webpage will know how and whether or not it could be possible for you to access in UK.
I know it is really hard and you are probably both exhausted just getting through each day at present, and maybe these options won't work for you. I hope you don't feel upset at me suggesting them.
I wish you all the best.
Jessica

Re: Brain Met
 

Jessica,

Thanks for the ideas. Surgery is next Friday. Hopefully everything will be removed, and then go from there.

Thanks again for your help.

Re: Brain Met
 

Hi

Best of luck with your gf's surgery.
I am starting my 3rd and last wk of WBRT. I have 10 tumors in my brain so surgery and cyber were not options for me.
I will starting Tykerb and Afinitor after I complete radiation.
I had been on kadcyla for close to 3 yrs and NED almost the whole time. But it does not cross the blood brain barrier. :(
I will keep you updated on how my new chemo cocktail is working.

Also get in touch with the pharma comps that make the drugs she needs. They can do compassionate use or discounted price. patientassistancenow.com and covermymeds.com. Those sites will do benefit investigations and look for companies or people who will sponsor you and pay for your meds

Keri

Re: Brain Met
 

Thank You, Good luck with your treatment.

We are in the UK, so I can't use the links you provided unfortunately.

Re: Brain Met
 

Just got back from the hospital. Surgery was a success all of the lesion was removed.

I know there is a long road ahead, but so so happy right now!

Re: Brain Met
 

WONDERFUL. YAAAAAY!!!

I am so happy for you!

Carol Ann

Re: Brain Met
 

Excellent. That must be such a relief. Rest well, recover well.

When you are in a place to do so, you may want to check to see if maybe those US sites would know of English equivalents that could help you get compassionate access to the Tykerb drug she needs next to help mop up the area effectively.

Does anyone on this page know who could help?
best wishes
Jessica
best wishes