diffuse astrocytoma stage 2 IDH wild type

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RE: diffuse astrocytoma stage 2 IDH wild type

by KB-Austin on Wed May 16, 2018 06:18 PM

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Checking in to see how you are dong Keithge and Suz222.  Mike completed his radiation and chemo and is now doing just chemo even though he is MGMT unmethylated.  Mike is  Diffuse Astrocytoma, Stage 2, IDH Wildtype, MGMT Unmethylated, EFGR Amplified, PK53 Mutated.  There are so many things that they still don't know about these things but they are learning more and more each day.  Curious what you decided regarding your surgery and treatment. 

RE: diffuse astrocytoma stage 2 IDH wild type

by suz222 on Wed May 16, 2018 06:41 PM

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Thanks for the update!  My son is the one with the stage 2, diffuse astrocytoma, triple negative.  He was diagnosed just shy of 6 years ago.  He did have a successful awake craniotomy 6 months later.  Outcome was a sub total ressection.  About 90% of his tumour was removed.  No follow-up chemo or radiation - it wasn't the protocol in those days.  He sees a neuro-oncologist every six months.  So far, no progression.  I pray this is his norm.  I must add, he's tremendously positive about his situation and I believe that he has sixth sense of what's going on in his body.  He's such a hero that I take my cues from him.

RE: diffuse astrocytoma stage 2 IDH wild type

by KB-Austin on Wed May 16, 2018 08:20 PM

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That is fantastic news!  Mike's tumor is (supposedly) not operable although we may get another opinion.  So glad to hear about your son.  Mike's son also has cancer - t-cell lymphoma - and just underwent stem cell transplant.  He came through it and also has the best attitude in the world.  Hopefully he will be cancer free as a result.  

RE: diffuse astrocytoma stage 2 IDH wild type

by suz222 on Wed May 16, 2018 08:23 PM

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So glad to hear Mike's son is doing so well after the procedure.  Best wishes that that's his new normal.  As for Mike and surgery - there are some wildly talented surgeons out there.  A second opinion is always valuable.

RE: diffuse astrocytoma stage 2 IDH wild type

by Buster00 on Thu May 17, 2018 02:50 PM

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Hi all I’m a grade 2 diffuse astrocytomer patient aswell , 7 year so far , had 80%removal and full radiotherapy and pcv so class myself as in the lucky few , now stable , Next scan on 13 June so back to nail biting time , humour is the most powerful health tool we carry pls all use it , thanks Léon

RE: diffuse astrocytoma stage 2 IDH wild type

by suz222 on Thu May 17, 2018 03:19 PM

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Laugh Out Loud!!!  Thanks Léon!

My son is scheduled for his next scan in early July and I was just looking at a calendar to see if I should start agonizing now or perhaps wait a week.

All kidding aside, it's something you learn to live with and it certainly helps hugely to focus on the things that count.  Check ups are stressful though.  Best wishes that yours is smooth as silk.

RE: diffuse astrocytoma stage 2 IDH wild type

by KB-Austin on Thu May 17, 2018 03:36 PM

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Good luck all on the scans!  I remember it well - my sister's husband had GBM and kept it at bay for over 5 years.  They did scans every month, held their breath, and breathed a sigh of relief (almost) every time.  You're right about learning to laugh, to love and live one day at a time.  Mike is fishing right now, with his buddies, in the Florida Keys - we've figured out that the 3rd week after chemo is when he feels his best - so we're scheduling trips around it.   Life goes on!  

RE: diffuse astrocytoma stage 2 IDH wild type

by suz222 on Thu May 17, 2018 03:40 PM

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You guys rock.  Hope he has a wonderful time in FLA.  Us guys, we're in Canada so enjoying our first few weeks of Spring.

RE: diffuse astrocytoma stage 2 IDH wild type

by Keithge on Sat May 19, 2018 11:59 PM

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Hi all, i have justed completed week 1 of radiation, 5 to go.

My visit to Charlie Teo for a second opinion on my inoperable status didnt pan out as expected. Teo, who has done thousands of brain surgeries, had never seen a tumor in that part of the brain (right lentiform nucleus). Whilst I was in the consultation he skyped a neurosurgeon in Oaklahoma, who advised he had only seen a tumor in that location once before.

Teo as I expected offered to operate but explained that I needed to be prepared that if the operation was unsuccessful I would likely spend the rest of my life in a wheelchair.

It was such a tough decision however i decided against the operation.

As it is a condition with so many elements I value you all sharing your experiences.

Thanks again.

RE: diffuse astrocytoma stage 2 IDH wild type

by Keithge on Sun May 20, 2018 03:06 AM

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Hi all, i have justed completed week 1 of radiation, 5 to go.

My visit to Charlie Teo for a second opinion on my inoperable status didn't pan out as expected. Teo, who has done thousands of brain surgeries, had never seen a tumor in that part of the brain (right lentiform nucleus / basal ganglia). Whilst I was in the consultation he skyped a neurosurgeon in Oaklahoma, who advised he had only seen a tumor in that location once before.

Teo advised he was happy to operate but there was risk of paralysis.

It was a tough decision but I decided against the surgery.

Thanks all so much for sharing your experiences of what is a condition with so many different elements.

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