diffuse astrocytoma stage 2 IDH wild type

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RE: diffuse astrocytoma stage 2 IDH wild type

by Buster00 on Thu Oct 25, 2018 03:18 PM

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Hi have you read my tumour journey ?

RE: diffuse astrocytoma stage 2 IDH wild type

by Keithge on Mon Oct 29, 2018 09:10 AM

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Yes thankyou Buster, your story is encouraging.

RE: diffuse astrocytoma stage 2 IDH wild type

by KB-Austin on Sun Nov 04, 2018 10:05 PM

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How were your MRI results?   Mike's continue to show some (very slight) growth - but the doctor's cannot really discern if it is tumor progression or the impact of the radiation.  So they are calling it "stable".  Now that chemo and and radiation are done we are looking at clinical trials.  There is an immunotherapy trial at the University Hospital in San Francisco that looks interesting and we are contacting them to see if he might qualify.  To be part of a research project would make us feel like we are doing SOMETHING.  Waiting for tumor progression just seems like a horrible way to spend our time.  Mike is still doing great.  One brief seizure when he forgot his medication for a day, and he gets tired quickly, but other than that he is doing well.  Wishing you all the best.  KB

RE: diffuse astrocytoma stage 2 IDH wild type

by Keithge on Tue Nov 06, 2018 05:46 AM

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Hi KB, good to hear Mike is doing well.

My MRI was also stable, no change in grade or progression.

Can relate to Mike's tiredness, it does impact you.

Can also relate to sourcing clinical trials. Hope something comes up for you both.

Regards,

RE: diffuse astrocytoma stage 2 IDH wild type

by Buster00 on Thu Nov 15, 2018 04:35 PM

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Hi all grade2 Astro people pls read my initial post . I’m 7 years in had opp radiotherapy and pcv chemo , changes in June 2018 so back on pcv until March 2019 . 1st scan since changes this Sunday 18/11/18????. Let’s all pray for each other and set new survivor records xx

RE: diffuse astrocytoma stage 2 IDH wild type

by suz222 on Thu Nov 15, 2018 05:14 PM

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With you!  New survival records 'R Us.

RE: diffuse astrocytoma stage 2 IDH wild type

by Buster00 on Thu Dec 20, 2018 04:08 PM

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hi my update ,sept 18 of mri ,bad news lots of bright areas  so now the tezolomide trip starts

RE: diffuse astrocytoma stage 2 IDH wild type

by KB-Austin on Sat Dec 29, 2018 04:33 PM

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Buster - so sorry to here this.  We are still living each day MRI to MRI.  I'm curious if they change the diagnosis from stage 2 to something else when things "light up".  We have not been eligible for any clinical trials because most of those trials are for stage 4.  Hoping you respond to the chemo and that the side effects are managable.   Blessings.  KB

RE: diffuse astrocytoma stage 2 IDH wild type

by Buster00 on Thu Jan 03, 2019 05:36 PM

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hi same as me  read my story x

RE: diffuse astrocytoma stage 2 IDH wild type

by Keithge on Tue Jan 15, 2019 07:52 AM

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Hi KB,

Was wondering how Mike is?

Have you had any luck with clinical trials?

I have completed 5 chemo cycles, 7 to go. Generally feel OK apart from chemo week (tired and achy on left side of body). Next MRI at end of January.

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