I've had my MRI scan. Nothing very interesting to say about it. I just had to lie still on a table while the radiographers operated the machine.
I don't expect to be told the results until my next appointment with the oncologist in two weeks' time. In fact, if they contact us early we'll only worry that the scan revealed something that needed more immediate action. So there should be nothing to report for a couple of weeks. No news is good news.
Every limb crossed here Julian wishing you a good scan result.
ReplyDeleteYou wish they could understand how hard the waiting is...our prayers and thoughts are with you.
ReplyDeleteJust to let you know that we keep you in our thoughts and prayers always following your posts with keen interest. You are a hero to many.
ReplyDeleteDear Julian,
ReplyDeleteI am following your blog avidly.My husband has just been diagnosed with the same tumour. He had his operation on 14th Dec and we were told the diagnosis on 20th. he began his 6 weeks of chemo and radio therapy on thursday.
The suddenness of the change from health to being terminally ill has been horrific for Dom,our two sons and myself.
He may be able to go onto a specific antibody trial at UCH in London, if he is among the 3 out of 10 with the necessary protein in their blood. I am wondering if we should fight for Chlomipramine like you?
with heart felt good wishes
Caroline
Hi Caroline.
ReplyDeleteNothing prepares you for receiving news like that.
I would most definitely go for clomipramine if at all possible. It's too early to say whether it has actually made a difference to me, and we don't know what would happen if I didn't take it, but I have read so many positive outcomes from people who have taken it including one woman whose tumour completely disappeared and has survived for years. It's claimed that clomipramine helps the temozolomide chemotherapy as well, so you should start as soon as you can.
If your oncologist won't prescribe it - ours wouldn't, though he said it wouldn't do any harm - then try to get it through your GP as we did. There are possible side effects, it's also a drug that you mustn't suddenly start and stop, you must build up to the 150mg a day maintenance dose gradually, so it needs to be taken under medical supervisioon. But our GP had experience of prescribing it as an anti-depressant in the past which probably helped. We also took printouts from the web of some of the articles about using clomipramine to fight brain tumours to show why we wanted it.
Apart from anything else, clomipramine is an extra weapon that will help you to believe your chances of survival are better than the doctors suggest. Good luck to Dom. Let's hope we're both still around in 10 years time to swap "we beat glioma" stories!
Julian Moss
Dear Julian,
ReplyDeleteMany thanks for the useful links,I will have a very thorough look.