Hi Diane

Good on you for being pro-active and writing in to Pharmac. Can you
share a copy of the final minutes with the group when you receive it -
I am really interested in what they have to say.

Lynda is currently doing very well. She is still taking metronomic
(daily) Temodal, which we are buying privately at full price, now in
her 13th cycle. It is tough financially but we feel it is worth it. If
there is any glimmer of hope that Pharmac will relax their
restrictions on funding then we will get right in behind it.

Happy new year to everyone on the list - hope you are enjoying the
great summer weather, whereever you are.

Chris
Wellington
h/o Lynda, dx GBM in Mar 2006

--- In nzbraintumour@yahoogroups.com, "Diane" <diaton@...> wrote:
>
> Hi to everyone,
> Just wanted to forward onto you a reply that I received after
writing to the Board of Pharmac - I wanted to start my New Year off by
being positive and saying just how I felt about their decision on the
6mthly release of Temodar here in New Zealand, and for only newly
diag. BT at that.. I felt much better just getting it off my chest,
and did wonder if I would get a reply. I had read where they were
making a decision in the New Year, but felt that the odd letter
writing would not go astray, as I myself have felt so strongly about
this, with my Colette having had Temodar for 18mths with her
treatments in the States. Mind you the reply from Dr. Moody told us
nothing that we did not already know, but he did reply which was
something that I thought might not happen.
>
> I have asked Dr. Moody for a copy of the final minute as he has
offered to send me. We will all be waiting for their decision I am sure.
>
> Thinking of you all , and the struggles that the New Year brings for
so many. On a more positive note, stay strong, love lots and take care.
>
> Diane
> mother of Colette
> Oligodendroglioma 3
> diag. '98
>