My gmb journey

Hi all ive been diagnoised with a gmb4. After 3 weeks of antibiotics for a suspected sinusistus. I was taken into hospital with suspected viral meningitis on the wednesday Given a cat scan and a large mass was found. Mri scan done and transferred to Neuro ward at other hospital and tumour removed on the Friday. Had results of bi ops last week and told it was a gbm 4. I'm 4 weeks post op today I'm off for my mask fitting for my radio. I'm 40 years old and I'm determined to fight this. Has anyone managed to fight it and get their driving licence back?

  • Hi Barreiex..

    I am  so sorry to hear od your recent diagnosis however driving for me was also a HUGE part of my diagnosis..basically the DVLA require you to surrender your licence and want you to be 2.5 years clear of the radiotherapy and with witj a clear scan... they will then consider reissuing your licence .. my Onxologisy and i have actually discussed tthe possibility i may ever ever drive again.....it is heartbreaking!!!


    As for your treatment... i jave completed the dual 6 weeks radio and chemo and whist thr daily chore to hospital was a bind ots the chemo lethargy i am struggling with at present.... my blood levels keep dropping and i have NEVER felt tieedness like it... but just listen to tour body each day... 

    Feel free to pm me if tou want as ay 46 we are quite similar.


    Best wishes

    Paula x

  • Thanks I'm sure I will have questions ive started to realise I will never drive again

  • Barriex , Sorry to hear of your recent diagnosis. My husband also has GBM4 and had to surrender his licence last year . I now drive us around , but he remains determined to drive again at some point , so do not give up . One of our good friends has just had his licence renewed following a two year journey with the same diagnosis  , so it is possible .. Keep positive x

  • Hello Barriex,

    I also have a GBM diagnosed 12 months ago at age 44 

    If you would like to know my story, read my profile and if you want to keep in touch send me a friend request  and we can chat through that.

    Colin

  • I got one of them and have been told my doc and Onc will support me to get my licence but don’t think I will bother as hubby is retired so available to drive me. My friend actually got hers back but kept forgetting she was the driver lol so she gave it back. So it can be done after a year after treatment completion and a year after seizure free

    Xxx

  • Dear Barriex,

    My mother has lost her license twice and regained it twice since being diagnosed. The first time was due to the seizure that led to the discovery of the tumor. After treatment was over, she was given back her license until a year later when the tumor came back and after the second surgery, she was extremely confused for a couple months. Once the treatment medicines kicked in and the swelling was reduced, she was allowed to get her license back. My kids just got back from spending a week with her as she drove them daily to swimming lessons and back. Keep up hope!

    Best wishes

  • Dear Barriex 

    Please read my profile if you want any more information about a GBM 4 sufferer who has lost and regained my driving licence twice. 

    Good luck 

    Stu 

  • Thanks all I'm more determined and hopeful of getting me back now

  • Dear Barriex

    So sorry that you find yourself here but I am sure you will find the posts on here helpful and comforting, there are some amazing contributors. My son who is 23 was diagnosed in December and so he is just a few months ahead of you, he fully intends to apply for his license at the first opportunity. He has started round 3 of TMZ today, the last round make him a bit weary for about 3 days but apart from that life is carrying on as usual.

    Wishing you all the best with your treatment.

    God bless

  • Hope all goes well for him. I'm off for my radio mask fitting tomorrow. Looking like first week of July to start my radio  chemo tmz

    I'e woke up feeling tired today. Seems like the smallest things make me feel tired. Im on no medication at the minute its 5 weeks port op this friday. Went for eye test yesterday and now need reading glasses

  • The worst thing for my son with the radio/chemo was the daily hospital visits, a 2 hour round trip although the treatment only took minutes.  One thing we did was use some of the people who had offered help.  We had so many offers from friends and family and this was one practical thing they could do.  My daughter made an online rota and got people to say which journeys they could do.  I always did the visit when he saw the nurse or oncologist but other people did the bulk of the journeys with me being there for backup, made it more interesting for our son and helped people be more involved, he had 16 different chauffeurs and was able to compare driving technics and cars!

    Fitting the mask they described as having a wet piece of pasta on your face which I think was quite accurate

  • Ive got amazing family  support so getting to hospital is sorted thankfully. 

  • The actual mask fitting is nothing..its a piece of plastic they warm onto yoyr face and then a fan is run whilst the plastic moulds snd dries... this is done once!!

    What i eould say is the most annoying is in my hospital i was given rhe 30 day program which then allowed for me to liaise eirh friends and family who could take me on what days...

    It eas great however then once the treatment started they regularly chamged the times... mibe were changed 18 out of 30 sessions!!! I did have to say no sometimes as being reliant upon others i had no choice!!!


    Regarding driving... i have been advised DVLA rewuire 2.5 years radiotherapy clear together with a clear scan they are happy with.... treatment is unknown so everybody is individual....


    The radio for me was painless... pure aloe vera gel keeps my scar nice and cool and sofyens tbe scar too...



    Tbe worst side effect i have foubd is this recent chemo lethargy...i have NEVER ZEXPERIENCED tiredness like it... i syruggle to get up the stairs somedays..its awful at 46@@! However we were warned i would have a spell like it... think i had hoped to escape....


    Keep your chin up and listen to your body day by fay.... all we can do xx

  • Hi Stu

    my husband is desperate to drive or rather ride his motor bike again but he was told not at least until two years after

    treatment finished. how did you manage to get yours back whilst still on the temozolamide? 

    Glad to read yourstory though. Very encouraging

    M x

  • 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

  • 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

  • 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

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

  • 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. 

    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