We Talk Brain Tumours

Martyn and Mandy, thanks for your thanks but was Ali24 who rescued you.

Am glad you are home!!!!!

TAke care

PEABSXXXXX

Hi Robin,

I'm so pleased you found us, I've been wondering how Jan is?

Best wishes,

Martyn

Hope I am doing the right thing in putting this up as a 'reply' but I am new to all this and not generally great with computers!

I wanted to ask if anyone had come across resistance to Temodal? My 15yr old daughter had 2 cycles of Temodal after the 6 cycles of radiotherapy and Temodal together for grade 3 astrocytoma diagnosed March 09, but MRI last week showed the tumour had regrown throughout radiotheraphy and Temodal so its been stopped. We're awaiting Oncologist decision on what to go for next.

We were so shocked to find the tumour had already regrown. Does anyone else have experience of this??

Thanks

mummaggie

Hi everyone, Glad to have found you again. It feels like we've been holding onto the "port key" in Harry Potter.

Mummaggie, sorry to ha abut your problems. Resistance to temodal can be a major difficulty and some others on the We Talk B T will be able to pass better comment, but it is always worth remembering that sometimes after the period of radiotherapy, the scans can be very difficult to read. Often there is pseudoprogression that looks worse on the scan than it reallly is. Good luck with the next developments.

To all of our familiar travellers not having you out theere created a real void. I'm very pleased to have renewed contact.

Best wishes to all.

Martin.

Hello Mummaggie,     Yes this is the right place - we are all struggling with this updated site. Resistance to temodal is unfortunately always possible, either from the start or it can begin at any point during treatment. As Martin said, it's very hard to interpret what is going on from the MRI's immediately after rt. Also, temodal is a fairly new drug and there are others that can be given eg PCV. This was the usual drug used before temodal became the standard drug - about 6 years ago I think.

Good to hear from you Martin, it was strange and isolated not having the thread wasn't it?

Hi Robin, Hope things are OK.

Love,

CHxx

Good morning to all,

Hopefully we may get the original thread and it's valuable contents back today?

Hi Mummaggie,

Glad you managed to find us although very sorry at the reason for doing so.

I'm afraid my knowledge of chemotherapy is nil, but the majority on the thread have vast experience and will be only too pleased to help and advise you. As you may gather the restoration of our original thread is having a few teething problems, but please stick with us.

For your information, there is also a brilliant thread called "Parents of Children With Brain Tumours", you may also find that very supportive and helpful.

Best wishes,

Martyn

mummaggie,

I have sent you a private message, but in short - yes through various brain tumour groups and forums I belong to, I have come across a lot of people for whom Temodal does not work.  Most go on to use Avastin (but its readily available in the USA) but not sure if its approved in the UK for use with BT's yet or just breast cancer.

I hope you can find some comforting help and information.

Thinking of you and littlesis.

Debs xx

Hi everyone,  What a long week it seemed last week with no thread really glad this as been started, hope everyone is doing ok.

Mollie XX

HI Mollie, glad you have found this temp thread. Hope the original thread is back asap.

At the moment I;'m under siege from a gadding puppy! I hope this will be followed by a nice sleep zzzz

What a shame you can't see the entire page of mails any more, just the last one. Or is that one of my settings? Often a reply covers not just the last mail and seeing all the previous on the page saved opening two windows.

Maybe there will be a Mac suggestion box soon?

Love,

CHxx

I'm a bit confused by the Buttercup The Brain Tumour posts - it's a link to a blog by a lady from Australia I think. Are blogs also notified to a thread then?

Oh, I'm too old for all these complicated pages! Mac should supply us with our choice of a nice young man or woman to come round and show us (slowly) what it all means. MRI's we can interpret but new web pages are a step too far!

(Naturally the young lady (for I'm sure he would request  a young lady) who helps Martyn out will get danger money!)

XXXX