Glioblastoma multiforme brain tumour

Glioblastoma multiforme (GBM) is a type of brain tumour. If you're suffering from glioblastoma multiforme, or know someone who is, join this support group.

My gmb journey

Smallp02
Posted by

As far as i am awae it is the radiotherapy ans clear scans not rhe xhemo...

Rjat is what rhe consistent mwsaage jas been ro me... ans yes, yoir Oncolofy team will help i am sire5as ans when th4 time xomes to reapply doe it back. 

Rhe mosy important rhing i was rold also.is iid you surrender rather rhan ir be requested rhen rhe DVLA will.look more favourably whwn it ia rime5ro eeapply..

Apwqk to tour team about it



Good luxk z

Paula x

Barriex
Posted by

I had my mask fitting and kick off my radio on the 4th of July. Feeling really positive. Apart from a visit from a local hospice on Friday. Won’t be having any more support from them for now. I need positivity not negativity in my life right now

marvellous maz
Posted by

Yes keep positive Barriex. My husband had a visit from the hospice well over a year ago and hasn't had one since. Hopefully you won't be needing them for a very long time. Take care and good luck with your treatment. 

Mx

Barriex
Posted by

Thank you.  I've spoken to my key worker and will be using someone else to help me sort pop etc. 

Barriex
Posted by

Well 6 weeks of combined chemo 140mg/radiotherapy done.  Went ok tolerated the treatment well 

Month break with a small family weekend away done. 

And first cycle of 5/23  chemo done  300mg TMZ.  MRI done next oncology next Wednesday month 2 of chemo. 

Starting to feel more me and less fatigue. 

Mangaed a train day out with the kids Saturday but it’s wiped me out the last 2 days. 

My ears irriate me a bit dry skin from the radiotherapy. 

Smallp02
Posted by
  1. Well done you... you've almost caught up with me now.. he he! I
  2. No..seriously..  I am back at ONcolivy Friday and hope to be started on the 3td of the 5/23 chemo.
  3.  I had 1 MRI few weeks ago but Kings wanted it repeating so it's arranged for 29th!!

In the meant8mr I knows exactly what you mean 're the le5hargy... all I will say is as time progresses from my experience so do your energy levels. . Keep taking everyday as you can and listen to your body ... good luck x

Paula x

Colin33
Posted by

Hello Paula,

It’s good to read you are doing well. I have now done 13 cycles of 5/23 of chemo (which makes it a full year). I have been doing really well with it and all my vitals are doing well so should start my 14th next week

My platelets got close to the threshold 6 months ago to where the oncologist was close to taking me off Temolozomide, but I changed my diet and they went back up and have now stabilised.

I had my last MRI done last week and there were no signs of any tumour and the cavity shows signs of shrinkage. My neurosurgeon keeps telling me I must be on magic mushrooms with the progress I keep making. 

keep fighting 

Colin

Get as much as you can out of life, as you don’t know what is around the corner 

Smallp02
Posted by

Hi Colin.

Thanks for the u0date and n8cw to hear from you..

How did you change your diet please? I have asked and been told it wouldn't make any difference but I will do whatever I can... I even sugges53d kryptonite maybe he he...

You keep up the great work xx

Paula x

Barriex
Posted by

Hi Colin and Paula nice to here from you both. 

Forgot to say I’m managing a little walk each day if I’m not feeling laggy! Best way I can describe it I have the motivation but my body tells me no. 

Doing a little bit at the gym when I feel up to it too. I’ve had a controlled program done by the council leisure Center. 

Im getting a pro at this train travel and managed a 2 night break with my OH 

Smallp02
Posted by

That's great to hear..  

I am going to try and plan a break away at  my parents I while for change of scenery..

 We did just have a right away as a friend of .one was running a half marathon in aid of my local Hospice (Between us we have raised almost £3000 We think)!

It is lovely to get away..

I also try and get out at least once every week to the shopping centre.. My Auntie and I go on a little adventure each week he he.. just for change of scenery and some exe4cise walking around..  always need something!!

X

Paula x

Barriex
Posted by

I’m planning trips all the time researching train fares etc. 

Got a break planned with my OH  to Milton Keynes train station close to the shopping Center so going to do do Christmas shopping. Managed to get return tickets for £20

learned that one  wheeled bag and a back  pack easiest to get around. Give yourself time to get to where your going and split travel over 2 days. 

Would be brilliant to set up a Facebook group to help people with break ideas easy access to train link etc. Finding not having my licence the hardest thing. Wife is learning to drive. But still want to make memories with our kids.

Colin33
Posted by

Thanks Paula and it’s good to see your doing well Brian

With my diet it wasn’t about trying to rid the GBM but to try and help with my platelets as they got down to 108 (below 100 and they would have stopped chemo.

So I started eating regular amounts of omega3 fatty acid foods such as salmon, and tuna. Eating lots of leafy greens such as spinach. I also stopped drinking coffee and started drinking green tea with papaya.

Straight away they went up to 140 and have stayed at that since.

when they were dropping it went from 130s then 120’s into 114 then 108 before it went up.

my diet is the only thing I changed besides a little bit of exercise on some portable peddles.

i hope that makes sense

Colin

Get as much as you can out of life, as you don’t know what is around the corner 

Barriex
Posted by

I’m 21 days in on my first 23/5 of TMZ  felt so good last week but struggling with lack of energy motivation this week

Smallp02
Posted by

Oh bless you..I know that feeling.. your head thinks yes but your body says noooooo,!!

well u was at hospiutsl yesterday for my Incology review and told my platelets levels the lowest they have ever been so can't start the next 23/5 And instead back for more bloods next week!!

I'm really upset as just want to get things moving but there us absolutely nothing u can do.. just a waiting game!!! 

Hope yours goes well in the meantime.. just listen to your body xx

Paula x

Colin33
Posted by

Hi Paula,

sorry to hear about your platelet count and what actually was it, like I said mine got low before changing my diet. 

I also eat regular amounts of avocado as well as the other things I previously mentioned.

Colin

Get as much as you can out of life, as you don’t know what is around the corner