Hi Mark and Liz,

Sorry to hear about this latest development but good to know that you
are staying positive and being proactive in exploring all the
treatment options.

If the tumour location allows, I would seriously consider the surgical
debulking option again, especially as it bought you an additional 3
years last time. Not only is it the quickest way of reducing the
tumour mass, and the associated swelling, but you can also get updated
pathology done. Perhaps the risks of haemorrhage can be lessened
somehow, given the problems you had last time?

Also, if Mark's neutrophils count is low he may be restricted in what
and how much chemo he can take? If you choose Temodal, there is the
option of trying a less toxic dosage schedule. Lynda has been on low
dose, daily Temodal for 21 months now and her blood counts have been
fine, whereas under the standard dose she had to stop treatment for a
number of weeks due to low platelets.

Good to know that Mark is otherwise keeping fit and healthy, running
18km is no mean feat! This is a big plus as you head into round 3 of
your fight.

Wishing you both all the best.

Chris and Lynda
Wellington

--- In nzbraintumour@yahoogroups.com, "methompson" <methompson@...> wrote:
>
> NZ Brain Tumour SupportHi Everyone
>
> Mark and Liz here...Mark with his AAIII tumour since Feb 1994...
>
> But now looks like he is heading into round 3 of his battle/our
battle - the latest scan shows the tumour has grown back - with
significant swelling as well.
> So that's pretty tough - but we were pretty much expecting this. We
will see a visiting oncologist (from Palm Nth) on the 1st of October -
and start to organise what happens next...
> Mark is also under Dr Muthu who visits from Waikato Hospital - a
neurosurgeon - and he will probably want to operate to do a bit of
debulking.
> We are not sure if, in view of the dangers of debulking, whether it
would be worth operating at all! After Mark's last surgery and
biopsy/debulking in Auckland 3 years ago, he had a cerebral
haemorrhage and was really ill and incapacitated.
>
> So maybe we will ask to forego surgery and go straight to chemo. We
are thinking of trying BCNU chemo again - as it had a pretty good
effect last time with 2 1/2 years remission... or use Temodal - we can
sort-of afford paying for it ourselves - as Mark's life insurance has
now been paid out (after the recurrance 3 years ago) - though losing
some of it in finance company collapses is not entirely helpful!!!
>
> Mark is having to take 3000mg of Epilim as well as quite a bit of
Dilantin because of increasing numbness and lack of awareness of where
his right arm is. He is having a bit of trouble with conversations and
reading and a lot of trouble writing...thoough he is still keeping fit
- ran his favourite 18 km track the other day - over the nearby hills
- though he admitted it was rather a slow jog!!!
>
> His white cell count has been a bit low too - maybe too low to
manage taking many rounds of chemo - so that might be a problem. His
white cells (esp neutrophils) are low because of bone marrow
suppresion caused by high amounts of Epilim and Dilantin - but he
needs to keep taking these!
>
> So it might be a bit of a rocky road ahead...but we are (mostly)
staying positive and I continue to be amazed at how well Mark has done
in spite of his illness. Its great to know you guys are with us
through all of this too...
>
> Love you all heaps
>
> Liz and Mark
>