GBM patients intereseted in a discussion ?
Hi I'm a male brain tumour patient since 2007.I am a GBM patient since May2011, I've had 4 crainiotomys to date, conventional fractionated RT in 2009,sterotactic Radiosurgery in Nov 2011. I attempted chemotherapy(Temodal) in June 2011 and I have just started a re attempt with it again this week, in the hope my blood results are better to allow me to stay on it for more than 1 cycle this time. I have had a reoccurence since the STRS in Nov2011 and am also suffering from what my consultants are suggesting is Radiation necrosis damage, My left sides upper and lower limb movement is getting drastically worse week by week since the STRS.
just wondering if there are any GBM patients or carers out there who have similar stories or had similar experiences they might be willing to share.
Comments
thank you very much for the reply 
, I previously attended a couple of the Brain Tumour support group meetings in St. Lukes Hospital,Rathgar,Dublin. However I'm particularly interested in discussions with people suffering from a GBM to be specific or who have undergone similar treatments or have similar symptoms to myself, The two meetings I attended did not have any such patients present unfortunately. I understand these are voluntary meetings and this cannot be guaranteed hence I'm posting here as an alternative.
Hi gbmgav,
My brother was diagnosed with GBM at the end of March and there really isn't much information in this country as far as I can see at this point. However I found this site:
http://www.cancercompass.com/message-bo ... ain-cancer
For me so far this is the best site for information and I also think it would be a good place for you to talk to people who have the same diagnosis as it is a pretty active message board with a lot of participants, including many GBM patients.
Hope this helps wishing you all the best.
Dear Gmbgav,
I am sorry that nobody has responded to you yet from the message board, I hope that maybe you will hear from somebody soon. You seem to have had a difficult time through all your treatment. Please feel free to make contact with us on the National Cancer Helpline, where you can speak with a cancer nurse specialist for further support. Our telephone number is 1800 200 700 and our lines are open from 9am-7pm (Mon-Thurs) and 9am-5pm on Fridays. We could also then offer you further information on some brain tumour groups which runs in St Luke's hospital and some other places around the country where you may be able to meet others.
I hope that this might be helpful to you.
Kind regards,
Cancer Information Service Nurse