From: Tse Family <tsetribe@...>
Subject: Re: [nzbraintumour] Mothers Day and PETs
To: nzbraintumour@yahoogroups.com
Received: Tuesday, 12 May, 2009, 11:37 AM

Hi Mark and Liz

Firstly, Mark, well done on doing the Rotorua Marathon...again! What an incredible achievement, especially under the circumstances.

I just wanted to comment on the PET scan option and your oncologist's comment that "there is no possibility of PETs in NZ using isotopes that actually penetrate the brain". I am not sure that is correct because I have read that the glucose isotope (FDG) is commonly used for PET scans of brain tumours, see the below paragraph:

At a cellular level, PET studies can demonstrate increased cell proliferation. There are a variety of
radioactive tracers, of which18F- fluorodeoxyglucose (18F FDG) is the most commonly used, and
illustrates foci of increased glucose metabolism.123- 129 Increased metabolic activity is a feature of high
grade gliomas, and FDG-PET can help distinguish low grade from high grade lesions pre-operatively,
as well as evaluate the extent of tumour infiltration, find an appropriate site for biopsy130-133 and
demonstrate malignant transformation in low grade lesions. In the latter situation, a new
hypermetabolic focus may appear. The presence of 18F FDG uptake has been shown to be an
independent prognostic risk factor.134-137 The limitations of 18F FDG imaging include the high
background activity of the normal brain and the raised activity exhibited by some low grade lesions
such as pilocytic astrocytomas, gangliogliomas, and oligodendrogliomas.
PET differentiate recurrent tumour from radiation necrosis with a moderate sensitivity and specificity
of 75% and 81% respectively.

Maybe you should ask him again?

Chris and Lynda
Wellington

At 09:46 p.m. 11/05/2009, methompson@xtra. co.nz wrote:

Hi Everyone
 
Thanks Linda for the nice Mothers Day wishes. Its great that Bruce had a good time in Australia, and that all went well with his trip.
 
Mark managed to run the Rotorua Marathon last weekend (his 3rd one in 3 years).in spite of the fact his tumour is still growing!!! But his main problem was that he had serious problems with the iliotibial ligament in his thigh from about 4 weeks before the marathon. It was extremely painful for him to train in the last 4 weeks, so he only had physio - which didnt help with the ligament much at all... then his knees seemed to pack up...so he probably shouldn't have tried to run the marathon at all - Nevertheless he did - although he had to walk for 26 km of it with very painful legs - St Johns, his wife (me!) and other helpful people wanted to pull him off the course - but he didn't want to stop - so finally completed it in 6.45 hours !!! Still he beat 26 people - including some his own age or younger!!! And, amazingly, he could still walk afterwards and isn't crippled for life...in fact this week his injuries have finally started to get better - and he was able to actually go for a short run yesterday!!! He got a nice finishers medal and T-shirt - so hes very proud of himself!!!
 
Since Marks tumour seems to be still growing, according to the MRI scan, in spite of 3 rounds of CCNU (November, Dec, and Jan) and two rounds of Temodal (Feb and March), it is all getting quite difficult now. He is taking 4mg Dexamethasone, as well as 3 different anti-epileptics. Lamotrigine is the new one that seems to be doing the best job, so now we are able to reduce the Epilim and Dilantin. The plan is to try Carboplatin chemo from next week. The oncologists think the tumour has become chemo-resistant, so there is only a slim chance that Carboplatin will work. But there seem to be no other options in NZ. The neurosurgeon (Muthu from Waikato) has proposed the possibility of  doing  some helpful debulking with "Awake" surgery if we would like to try that later in the year.
 
Meantime the other recommendation we have had from a locum American radiologist (who read Mark's last MRI scan here in Gisborne) is that Mark should really have a PET scan to make sure it is tumour regrowth not scar tissue. The oncologist says there is no possibility of PETs in NZ using isotopes that actually penetrate the brain. Wakefield Hospital in Wellington only have glucose isotopes which are no good for reaching brain tumours - so that is the end of that discussion. Besides, since Marks surgery and radiotherapy was over 14 years ago, scar tissue shouldn't be growing now. However we wonder whether it could be scar tissue from 3 years ago when he had his last biopsy/debulking? The neurosurgeon isn't interested in PETs either, he would just like to do surgery to see whats there.
 
We will keep you updated, but would really appreciate any comments/advice,
 
Mark and Liz