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Hi Paddy
Below is a link to the medsafe website with the information of how Temodal is administered. Most of the data has shown that best results are obtained when it is taken during radiotherapy and then followed by a further 6 months of treatment. My husband Dave only got to take temodal on the last 10 days of his radiotherapy as our Oncologist hadn't told us about it. So even though Dave had basically finished his RT treatment we still decided to go onto Temodal.
This is an excerpt from the information on the medsafe site...
TEMODAL Capsules are indicated for the treatment of
- patients with newly diagnosed glioblastoma multiforme concomitantly with radiotherapy and then as adjuvant treatment.
- patients with recurrent high grade glioma, such as glioblastoma multiforme or anaplastic astrocytoma.
TEMODAL capsules are also indicated as first line treatment for patients with advanced metastatic malignant melanoma.
Although the drug is intended for use on Anaplastic Astrocytomas (as you can see from the text above in blue) in NZ , as you know, is not subsidised for AA3 Tumours. I have attached the notification that PHARMAC released when the drug was first subsidised in May 2006 which has more detail. But basically what PHARMAC did was subsidise the smallest number of patients as possible.
At the time Dave and I and many of our supporters made appeals against the decision and argued for a wider subsidy, but to no avail. See the press release below from Dr Jackie Blue, National Associate Health Spokesperson.
Wider access to brain tumour drug needed
Monday, 6 March 2006, 12:45 pm
Press Release: New Zealand National Party
Dr Jackie Blue
National Party Associate Health
Spokeswoman
6 March 2006
Wider access to brain tumour drug needed
National Party Associate Health spokeswoman Dr Jackie Blue is calling for wider access to
the brain tumour drug Temozolomide.Last week, Pharmac announced a provisional agreement with drug company Schering-Plough for funding Temozolomide for newly diagnosed
brain tumour patients only.
Monday, 6 March 2006, 12:45 pm
Press Release: New Zealand National Party
Dr Jackie Blue
National Party Associate Health
Spokeswoman
6 March 2006
Wider access to brain tumour drug needed
National Party Associate Health spokeswoman Dr Jackie Blue is calling for wider access to
the brain tumour drug Temozolomide.Last week, Pharmac announced a provisional agreement with drug company Schering-Plough for funding Temozolomide for newly diagnosed
brain tumour patients only.
"The patients who have a recurrence of their tumour miss out. This seems grossly unfair when internationally this drug is the standard of care for this group, “ says Dr Blue.
“The early trials of Temozolomide were done only in recurrent patients. If it were not for these trials, the more recent trials with newly diagnosed patients would never have eventuated.
"New Zealand's proposed access to Temozolomide for only newly diagnosed patients is at odds with Australia, Canada, the United States, the European Union, which has approved this drug for both groups, and the United Kingdom, which has approved it only for recurrent patients,” says Dr Blue.
ENDS
Maybe with an election looming it is time to rattle the cages again. ??
But that doesn't help you in the short term. To answer your question as to whether to fund it yourself...well that is your decision alone and it is hard to know what to say...all I would say is that Dave and I decided to pay forTemozolomide... he had about 10 full dose treatments a well as the 10 days of low dose during the last few days of his radiotherapy. So it was an expensive exercise as the dose is based on your body mass ...and Dave was 6ft4. We decided it was worth it and started paying ourselves, then our friends and whole community got behind us and helped pay the fees. So we were very very very lucky.
The good news is that because the drug is indicated for Anaplastic Astrocytomas your Dr can legally prescribe it for you. The funding issue is your business not your Oncologists...they have a duty of care and should be advising you of all options fully. Dave and I truly believe that his Oncologist didn't tell him about temodal because HE thought we couldn't afford it...but as I said thats not their decision to make.
Its really difficult to know what to say..
it is Brain Tumour Awareness week from the 21 - 27 October and I am hoping to raise the issue in the media again, if only locally.
In the past year I have spoken with a few people is the same position as you. Diagnosed with a Grade 3 Tumour and then being told its not bad enough to get the subsidy...which is just so so unfair.
I hope some of this info helps
Penny x
----- Original Message -----From: Paddy and stephSent: Monday, October 08, 2007 12:59 PMSubject: [nzbraintumour] AA3 -radiation only
Hi there, I wonder if anyone can tell me what the best line of defence is regarding temadol. At the moment I have just finished 6 weeks of radiation, luckily with no side effects only a bit less hair from when I started. Funding through the public health system over here in N.Z. for an AA3 tumour is only given if the tumour should reoccur which just seems crazy to me as I would have thought to throw everything at it especially since I had a complete surgical resection of it, but no they would rather wait to see if its going to recur first. Maybe they think there is no need to make me sick taking chemo if there is nothng visible to treat, I really don't know.
How long should I leave it before I look into funding it myself?, is the an effective period after radiation to use temodal in or should I have taking it through radiation. Is there a timeframe after radiation that is most effective for using temodal within? I mean is starting it 6 months after radiation too late for an effective result. I hav'nt really had a lot of direction from my oncologist, and to be quite honest she is'nt very positive about the whole matter at all.
Any words of wisdom, and where to go from here would be very much appreciated.Thanks Paddy, N.Z.
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