12 replies to this topic

[Painted Daisy]

Does anyone out there have a GBM in their spinal cord L1 or similar area? I do & am looking for someone who's been down this road to ask a few questions. i was diagnosed 2 yrs ago & seem to be doing fine, even though I am paralyzed. The Drs. cannot tell me what my life will be like a yr or 2 from now. I would like to know what happens to the body.

[Smileyblue]

I cant help with your question, but want to welcome you to the site..

If you're paralysed, you're going through the same stuff as we all are, so you've come to the right place for support.. ;-)

[Tetracyclone]

don't think any of us know what lies ahead, and whatever doctors tell you is nearly always wrong.

[Soryfam]

I also have no info for you, but there's a good chance someone here will. I'll be interested in the replies, as I have no clue about treatment and such (can they remove it, has it every been done successfully so that feeling is returned?

Welcome to our group.

[bru]

I have a GBM level 4 that started at t7 and is causing a loss of neuro as time progresses. I was only diagnosed in Feb 2011 and have had temozolomide chemo and radio. That hasn't worked so I am now on PCV treatment. As you will see from my old profile this tumour paralyzed me way back in 2008 and the drs couldn't work it out. So from then till Feb this year I went back to work and re-started my post- grad before pain etc intensified. Anyway spinal cord resection is an option apparently but as you have probably discovered there aren't too many people out there with this disease who don't also have it in their brain. Good luck and if you have any questions fire away as my disease has progressed quickly over the last couple of months.

Bruce.

[bru]

Hi painted daisy you haven't specified the WHO classification of your tumour. They are graded1-4 so hopefully yours is a low level tumour. Anyway I hope you are doing okay and feel free to fire q's at me because there are so few people out there with GBMs in the spine.

Edited by bru, 05 September 2011 - 03:40 AM.

[Painted Daisy]

bru, on 05 September 2011 - 03:39 AM, said:

Hi painted daisy you haven't specified the WHO classification of your tumour. They are graded1-4 so hopefully yours is a low level tumour. Anyway I hope you are doing okay and feel free to fire q's at me because there are so few people out there with GBMs in the spine.

Hi Bruce,

I'm grade4, and I'm glad to know there is at least one other person in this world that has been diagnosed with this. Thank you for responding to my post. It's scary, having something so rare, and terminal. The doctors dont want to tell you anything, because they say they don't know.

It must have taken alot of courage and determination to return to work and school after becoming paralyzed. I'm sorry to hear your GBM has progressed somewhat since Feb. 2011. If I may ask what is PCV?

I also went through radiation & temodar chemo, plus additional maintenance temodar for 6 months. Lost my job, unfortunately. I am just now in the process of awaiting word from our states vocational rehab program.

I'm new to this Posting stuff, so I'm not sure just how much info is too much. I do want to thank those of you who responded you've made me feel 'welcomed'.

Looking forward to sharing more info.

[sherbs]

Hi Painted Daisy

There is a website called www.spinalcord.org. or it mght be www.spinalcord,com im not sure which one, they have a wealth of information, and may have some other people with your kind of tumor

I also have a spianl cord tumor, its a gangliglioma, low grade. but have been through the usual ups and downs,

If you want any info or just a chat, please do contact me

With kindest reagrds

Sherbs xx

Ps, sorry its called www.spinalcordtumor.org, or www.spinalcordtumor.com Hope this is of some help xx

Edited by sherbs, 06 September 2011 - 07:58 PM.

[Painted Daisy]

sherbs, on 06 September 2011 - 07:56 PM, said:

Hi Painted Daisy

There is a website called www.spinalcord.org. or it mght be www.spinalcord,com im not sure which one, they have a wealth of information, and may have some other people with your kind of tumor

I also have a spianl cord tumor, its a gangliglioma, low grade. but have been through the usual ups and downs,

If you want any info or just a chat, please do contact me

With kindest reagrds

Sherbs xx

Ps, sorry its called www.spinalcordtumor.org, or www.spinalcordtumor.com Hope this is of some help xx

Thanks Sherbs, I will certainly check these websites out. And I would enjoy hearing from you, I hope I can keep you in my friends list. And I will let you know if I find anything interesting. I will send it via personal msg if that's ok with you.
Have a great day!
Painted Daisy

[pinkcloud]

hi painted daisy

i hold onto this thought to help me...we are lucky in that we know the reality that although we think today is hard, the next minute may be even worse (even though it feels like it cant get worse) so we can live and make the most of our day...just because we have the proof of many yesturdays behind us..its not guaranteed we will have the same amount again. sunsets a definite treat for you as much as me it seems. Its a great comfort in an ever changing world, its one thing that is always with us.from birth to us passing away from this life

i have no idea what the condition is as i never heard of this i am sorry. I be happy to learn from you though.

In this country i too am classed as rare with me condition too.

I know that loads of people have diabetes, asthma, arthritis....and still theres no answers. So theres not much comfort in medicine knowing lots about a particular condition.

lovley to meet ya

[Painted Daisy]

pinkcloud, on 18 September 2011 - 06:54 AM, said:

hi painted daisy

i hold onto this thought to help me...we are lucky in that we know the reality that although we think today is hard, the next minute may be even worse (even though it feels like it cant get worse) so we can live and make the most of our day...just because we have the proof of many yesturdays behind us..its not guaranteed we will have the same amount again. sunsets a definite treat for you as much as me it seems. Its a great comfort in an ever changing world, its one thing that is always with us.from birth to us passing away from this life

i have no idea what the condition is as i never heard of this i am sorry. I be happy to learn from you though.

In this country i too am classed as rare with me condition too.

I know that loads of people have diabetes, asthma, arthritis....and still theres no answers. So theres not much comfort in medicine knowing lots about a particular condition.

lovley to meet ya

Ah Pink, you have any amazing way with words, I find I sometimes reread to get to the heart of what you are saying, as I am from a different part of this world. It is a wonderful thing that while we may be confined(I don't like that word)we can use the computer to reach out to others for support and knowledge, it's just awesome! Thank you for your compassion:)

[bru]

Hi Painted Daisy,

To answer your question about PCV treatment - it is just chemo with three old drugs they used before Temozolomide (Temodar) treatment called Procarbazine, CCNU (Lomustine) and Vincristine = PCV.

I think in the states they use Avastin instead when Temodar fails.

Basically PCV is second line treatment. i started it on Friday for the second time so it is the usual chemo nonsense.

Any kind of GBM in the spine is a bit of a lottery and from what I can gather the further away it is from your brain the better really.

There is not of info out to be honest so the more people who share experiences the better really.

I was told I had I weeks/months in August and i am still hanging in there.

Take care

[friend1]

Painted Daisy, on 16 August 2011 - 03:57 AM, said:

Does anyone out there have a GBM in their spinal cord L1 or similar area? I do & am looking for someone who's been down this road to ask a few questions. i was diagnosed 2 yrs ago & seem to be doing fine, even though I am paralyzed. The Drs. cannot tell me what my life will be like a yr or 2 from now. I would like to know what happens to the body.

I know someone that has GBM, grade 4. She was recently diagnosed so I can't tell you about the future, but can share about the problems now she is having.

bru, on 05 September 2011 - 03:39 AM, said:

Hi painted daisy you haven't specified the WHO classification of your tumour. They are graded1-4 so hopefully yours is a low level tumour. Anyway I hope you are doing okay and feel free to fire q's at me because there are so few people out there with GBMs in the spine.

I can't find any definite answer about the rarity of a spine tumor, specifically GBM. Doctor give generalities. Do any of you have a better answer?

Do you still have severe pains and what medications for you worked for the pain?