Massive family day 3/10/20

Hi Brain Fighter

Having a monster living in your head is not easy for any of us but you have a particularly difficult set of circumstances.

I just wanted to drop you a line and let you know that I'm thinking of you today and hope that your MRI results are as good as they can be (I get my latest results on Thurs so know the uncomfortable feeling of waiting for the news).

Ping a line back and let me know how it went if you feel you want to talk.

Take care

T

Hi Tracy

It's still stabler so very pleased, I believe the only reason I'm still here is the most natural herb in the world, I would love to talk to people about GBM4, we're all different, different situation, for me everything is different in each person. It's picking little important bits from people which are the interesting thing to find....... I am trying to understand life now, and what a few steps are.... 

It would be good to talk.... 

chris 

Hello Chris, have you looked febendazole and mebendazole up?

Hi

I went to Germany a few months ago to meet a chap with some cancer knowledge. Lovely chap, I built loads of ideas, loads of genetic drugs like COC in Harley Street sat in a bag ready to take, with loads of supplements I took, BUT..... right now, I am only Episenta prescribed from the hospital 

Sorry, my wife works at the biggest Pharmaceutical company in the world which makes my house messy, I’m having to convert my double garage into my studio flat to see my kids........ I will take that!!!! 

I start chemo 180mg TMZ today (11th) 

I wish you all my best.... I’m still lucky and around,

chris 

Hi Chris

Stable is good, so that must be a relief.

I find the words we use to discuss tumours odd, but things are all relative. 

In relative terms I'm lucky - I have a low grade tumour. It was fully excised 6 years ago but grew back only 2.5 years after surgery. A second op could only debulk it. I now live in the wait and see what happens next cycle of scans. 

For sharing news/experiences of GMB4 have your read the blogs (he's now written a book about his journey) of Martin? I came across him on this forum - he uses the name Cyril the Arsehole (that was his user name here). He swears a lot but we've had some very funny exchanges. 

Brain monsters are horrible so good you're a fighter. Such a shame you've not had support on the domestic front but making a home studio sounds as if it will keep you close to your kids, and certainly give you a project.

Good luck with the chemo. I've got my scan result this pm so might be on the chemo road myself soon.

T 

Hi Tracy

I’ve seen there are a 10 Martin chaps, I’m stupid, nothing is clear for me anymore, which one is the GBM4 connected chap? Looking forward to it reading about his experience...

Thanks Tracy, I hope you’re ok........ 

Unknown said:

I start chemo 180mg TMZ today (11th) 

You mean 11th round of temodar? I took 200mg/day/5/23 for 12 momths. The MRI remained the same during that time and for about a year after. Methylated, IDH1, 1p/19q oligo grade 3.

Hi again

 don't know the details of how it works but he was blogging as Cyril the Arsehole. Can you use that? I'm not into social media so this forum is as much as I speak to anyone. Luddite, I know. 

How are you feeling with the chemo?

T

Hi T

Sorry, just watching a dog being sick on gogglebox  my arm hurts as I had a tattoo done.... the balance of chemo is ok so far, my brain’s not great and I get zero support from anyone to post anything right.... 

Be great if we could stay in touch, messenger any good?

chris