diffuse astrocytoma stage 2 IDH wild type

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RE: diffuse astrocytoma stage 2 IDH wild type

by KB-Austin on Thu May 24, 2018 08:13 PM

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Yeah, Mike's tumor is in his thalamus and 2 other locations, so too tricky to operate.  He finished up his 6 weeks of radiation + TMZ, and is now doing 6 months of TMZ- 5 days on and 23 days off.  He tolerated the chemo/radiation very well.  Starting to feel some of the chemo side effetcts, but it is managable - mostly tired and a little bit nauseaous.   Good luck to you on your treatments.  Our doctor has spoken a bit about some of the immunotherapy work that is being done on these cancers, but she said it is still very experimental and the side effects can be difficult.   There is a webinar on this that I just signed up for about it.  Here is link if you are interested.

https://register.gotowebinar.com/register/121094972101104742

RE: diffuse astrocytoma stage 2 IDH wild type

by Keithge on Thu May 31, 2018 11:56 AM

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Thanks for the info and for your well wishes KB, am interested if researchers are making progress with immunotherapy for brain cancer however the webinar is overnight (4am) Australian time so will have to miss. Look forward to reading a post on how it went.

Cheers

RE: diffuse astrocytoma stage 2 IDH wild type

by Buster00 on Thu Jul 19, 2018 03:34 PM

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Hi I’ve got the same tumour since 2011 had operation , chemo and radio since , all been stable until this week when growth seen on mri back to more pcv I’m told , anybody else had this journey ?

RE: diffuse astrocytoma stage 2 IDH wild type

by KB-Austin on Sat Jul 21, 2018 04:35 AM

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Wow!  Encouraged that you have not had any issue since 2011. I worry so much about the IDH wildtype.  Are they going to re-classify the tumor?  Mike doesn't qualify for any trials because he is a stage 2.   But we keep checking.  Mike is doing great right now.  So we are grateful. 

RE: diffuse astrocytoma stage 2 IDH wild type

by suz222 on Wed Aug 29, 2018 07:22 PM

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How is Mike doing these days?  I hope awesome.

RE: diffuse astrocytoma stage 2 IDH wild type

by KB-Austin on Wed Aug 29, 2018 08:34 PM

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Mike is doing really well, thanks for checking in.  On his 5th round of chemo this week, then 3 weeks off, and does his 6th and hopefully final round in September.  He has been taking a small dose of steroids on chemo weeks to help with fatigue and it has done wonders.  His next MRI in October will help determine our future course of action.  She believes in wait and watch, so long as everything is quiet - but encouraged us to get a second opinion on treatment options given the triple negative biomarkers, lack of surgical resection, and his MGMT unmethalayted status.  In the meantime, we have been travelling a bunch, enjoying every minute, and planning a big party for out 20th wedding anniversary next year.  How is your son?

RE: diffuse astrocytoma stage 2 IDH wild type

by suz222 on Wed Aug 29, 2018 08:46 PM

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I'm so glad to hear Mike's doing well!!!  Happy upcoming 20th too!  I really think triple negative biomarkers are a huge survival advantage - my son is a triple negative as well as Mike.  And, thanks for asking, he's doing wonderful well.  He had his biannual MRI in July and all was well.  Such a relief!!!  On a different note - my sister-in-law was a neuro intensive care nurse at Sloan Kettering in NYC before going back to school to become a doctor.  She's now a neuro shrink.  Anyway, in her experience, many people had years and years of progression-free survival after diagnosis.  Decades even.  In the 6 years I've been following brain cancer, I've seen massive changes.  Still, there's so much not known.  Perhaps those like Mike and Drew (my son) will inform the field for those newbies recently diagnosed.

RE: diffuse astrocytoma stage 2 IDH wild type

by Keithge on Fri Oct 19, 2018 03:07 AM

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Hi KB, just checking in to see how Mike is going since he has now finished chemo? 

I am on my second of 12 chemo (temolozide tablets) cycles, struggling a bit with nausea and headdached but otherwise OK.

RE: diffuse astrocytoma stage 2 IDH wild type

by KB-Austin on Fri Oct 19, 2018 01:49 PM

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Good to hear from you!  I have tried 3 times to post, and somehow keep deleting it.  So if you end up with 3 responses... sorry!  Mike stopped the chemo after the 5th round because his blood counts fell pretty low.  The impact of chemo with MGMT unmethylated is pretty uncertain anyhow.  He tolerated it well, took ondansetron 30 minutes prior to each session and didn't have any nausea.  We have our 3rd post-radiation MRI in 10 days.  Fingers crossed.  He is on 1500mg of Keppra and forgot to take a morning does last week which resulted in a small seizure - they are verbal, he starts talking jibberish.  But other than that you would never know he has cancer.   I hope your 12 cycles pass quickly and easily.  Please keep us posted and I will do the same.

RE: diffuse astrocytoma stage 2 IDH wild type

by Keithge on Tue Oct 23, 2018 09:37 AM

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Hi KB, thats great that you would never know Mike has cancer!

I recover pretty well a few days after my chemo cycles but i have ongoing cancer symptoms in the form of light headache and aches in my left leg and arm. No seizures. Still working so things aren't that bad.

Have my second post radiation MRI in 2 days.

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