gbm 4th yr no steroids

hi im now in to my 4th year with gbm,and have never used steroids.i have mri scans every 8 wks to ensure all is well and ive seen a lot of people over the years and they have all been on steroids.i did 6wks radthpy,18 mths temodal,1yr off,then slight show on mri,then back on temodal for another 6 mths ,and all scans fine. i'm 53 yrs tumour was in right temporal lobe and removed in sept 09. i've not even had a headache throughout any of this,i think the worst bit for me was the moulding of the mask for the radthpy,oh and i dont like mri scans either,but apart from that all good. anyone else not had steroids or major probs,thanks to all john.

Hi John, Glad to hear things are going so well for you!

My son Chris is 18 he has the exact same history as you no steriods no headaches but his treatments were shorter 6 months and now MRI 10/1 shows a small growth.. His surgery was 11/5/08 were only 1 year out..Were did you get your surgery and treatments??

My son goes back for another MRI on Nov 9th.  we meet with Doctor on the 10th from what a gather were looking at another sugery..He is currently on temador 100mg every day now (no side effects)

 Would you mind sharing your details..Thanks best to you.

My love and prayers to all on the site too..

Diana  my son Chris dxgbm 11/08

John,

Congratulations!  After I heard that you had a bad MRI I was worried that the new growth couldn't be stopped.  This great news.  I'm 3 years 4 months out without a change in MRIs.  Your news is very encouraging.

I only had sterioids after the biopsy.

Larry

John, really glad you've had such great success with the Temodar! One of the lucky ones. Same with headaches... probably depends where the tumor is and how big, right? Where was your tumor and how did you know something was wrong? Seizures?

My son's tumors were massive mostly in the left temporal lobe, and his head was just exploding with pain. The very size of the tumors had pressed the 'midline' over into the right, and there was danger of uncal herniation, meaning pressure on the brain stem. When brains get squished, there's nowhere for them to go!

Steroids: he has used them in emergency to reduce the swelling and save his life (again re. uncal herniation) and manage the pain... but each time, we taper down to ZERO as quickly yet gently as possible. Seriously, he would have died last January without them.

Hope you can keep the clean scans going, all the way! Life is good.

Sarah

mother of Andy 27 dx gbm/pnet 1/09

Hi John thats really a great news to hear,my dad is also gbm patient dx jan09 who is 56 old..but really struggling to taper down steriods..he is now on 16 mg of decdak using since the day he had his surgery..we dont know what to do ..if we r trying to taper down he is getting sick..

it is so scary but dont know what to do and in INDIA doctors are not helpful

keep it up..god bless you.

sakshi

hi John

What good news ,well done you ....my daughter was on steroids during her radiotherapy to reduce swelling , but since then she has been treatment free, she was dx March 08, inoperable gbm due to location, had 6weeks radiotherapy , then 6 months temodor , reduction in tumour 60%... they stopped treatment in dec08 which i was a little worried about , and she had scans every 3months and tumour stable no change, so have decided to scan in 6 months... she has now had no treatment for a year and is doing great, the break from treatment has enabled her to regain her strength and live a normal (well normal as poss ) life... we are in the uk and it seems interesting that this is the path they seem to take here re treatment , but all i can say is so far its doing ok for Jossi ...and clearly you , keep up the good work and many more clear scans to come x

Wow, John. Good for you! Glad you've never had to detox from steroids, but they are sometimes a necessary evil, as Sarah said, to save a life or reduce the excruciating pain of a GBM headache. I've had that headache--it's what sent me to the hospital the first time--and with the first injection of decadron, it was gone. I have always been able to wean off of them on schedule. (I just had my third surgery a month ago)Sometimes I have to tough out some leg pain, headaches, fatigue, etc. Some are able to, some not.

I'm 54, into my third year with GBM and hope to see a fourth, like you. Keep up the good fight!

On Nov 02, 2009 8:25 PM John_Bham_uk wrote:

hi im now in to my 4th year with gbm,and have never used steroids.i have mri scans every 8 wks to ensure all is well and ive seen a lot of people over the years and they have all been on steroids.i did 6wks radthpy,18 mths temodal,1yr off,then slight show on mri,then back on temodal for another 6 mths ,and all scans fine. i'm 53 yrs tumour was in right temporal lobe and removed in sept 09. i've not even had a headache throughout any of this,i think the worst bit for me was the moulding of the mask for the radthpy,oh and i dont like mri scans either,but apart from that all good. anyone else not had steroids or major probs,thanks to all john.

Wow, four years! My husband needs to be in touch with you. He was dx this past February. Surgery, radiation, Temodar and now Temodar and clinical trial vaccine. My husband was only on steroids when initially diagnosed and for several days following surgery. They weaned him off as soon as he was released from the hospital (surgery on a Friday released that Sunday). They tapered him off the decadron (I think that's what he was on) over 10 days, I believe, by lowering the dosage each day. He did great with that and has not been on steroids since.  He is doing amazingly well and we feel very blessed. We know this thing can change at any time but feel hopeful that he will be one of the lucky few.

Thanks you, John, for sharing your story. You give all of us great hope.

Holly

Husband dx GBM IV 2/09

So glad to hear a positive story.  I hope my dad sticks around 4 years +.  You give us all hope..God Bless

If you don't mind me asking, what stage of gbm do you have?  As I have gbm Stage IV which is terminal  and the only way of survival is radiation, steroids, chemo and trial meds.

Thanks for a response.'

God Bless You to continuing to do do very well!!!!