Low grade glioma conversion

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Low grade glioma conversion

by zbytowar on Sun Apr 23, 2017 04:57 PM

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Anyone have any experience or guidlines on how long it takes a low grade glioma to advance to a higher grade?  Also are there symptoms that go along with this transformation or is it usually out of the blue?  Any advice or knowledge is appreciated.  Thanks. 

RE: Low grade glioma conversion

by mcoss on Mon Sep 18, 2017 02:08 AM

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Hi Zbytowar, 

Im sort of in the same boat. Have what they are pretty sure is a low grade glioma.  I had a biopsy that was undiagnostic.  But by mri and the extra glial cells they found on my biopsy they believe its a glioma. Right now its a watch and wait. So every 3 months i go for an mri to watch for subtle changes.  It was found by me having partial complex seizures.  They think I've had it for even 6 years. Are you in a similar situation?

RE: Low grade glioma conversion

by Dodgerblue on Tue Sep 19, 2017 01:00 PM

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There really aren't any guidelines on how and when one's tumor may progress or return.  Everyone seems to have a different journey.  Low grade glioma's can be very slow growing, especially certain types of low grade glioma's.  Your Doc's will keep it eye on it.  You'll likely need MRI's for the rest of your life, but no reason you can't live a very long life.  

Dodger

RE: Low grade glioma conversion

by mcoss on Wed Sep 20, 2017 03:05 AM

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Hey Dodger , 

Thats great to hear someone say. My problem is the unknown.  If my mass is malignant or not.  I keep telling myself it could be worse they could've found it stage 4. But then there's times i panic and wanna just say ok lets do the open biopsy with the risk of side-effects but at least if its malignant we got it early.  My fear is that in between my 3 month mris this thing goes to stage 2.  I guess its just adjusting to it being part of your life.  

RE: Low grade glioma conversion

by MrsJahBless on Sun Sep 02, 2018 12:48 AM

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Wow, you sound just like me! My LGG is risky to biopsy and sometimes im like lets do it so i will know what im facing here. My fear is also that time is wasting with the wait and watch approach. My MRI gets repeated every 6 or 12 months and its scary thinking there could be a change. 

RE: Low grade glioma conversion

by Buster00 on Thu May 09, 2019 02:44 PM

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this is the journey we are on sorry to say watch and wait ,surgery ,chemo pcv, radiotherapy ,pcv again then tezolomide unless we find an immune therapy avail in uk ?

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