GBM 4

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GBM 4

by Kevinflyscreens on Wed Sep 13, 2017 03:17 PM

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Hi My wife was diagnosed with grade 4 glio multi in the front left lobe most of the tumour was removed and she had the 30 radio sessions but only complleted 20 temodor tablets as her plates were very low.It is now 4 weeks since she had the tablets and the plates are still low.I am worried that the treatment will not work unless she starts soon.The doctor told us the GBM tumoour probobly would come back and if she couldn't take the full coarse of temador it would without doubt.Has anybody else had this experience as I am worried out of my mind.

RE: GBM 4

by MommaCat on Wed Sep 13, 2017 06:12 PM

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My wife has the same profile as yours, including 95%+ removed along her left temporal lobe.  She only lasted 28 out of 42 days on chemo (temozolomide) and completed radiation @ 30 treatments.

Her platelets dropped significantly.  But after one month off from combo therapy, her bone marrow bounced back and she presented a bolstered platelets count @ 191,000 (up from as a low as 12,000 39 days earlier).

The next regimen was to take the same # of temozolomide (TMZ) MG as she did during chemo and concentrated radiation.  So, for the upcoming six-to-12 months, it's 5 consecutive days of TMZ and, then, 23 off for a 28-day cycle.

On days four and five, she felt zapped and slept for hours both afternoons.  It's due to a sensitivity to the drug, which our neuro-oncologist explained isn't necessarily a bad thing. I, too, was worried out of my mind, although we weren't told explicitly the same message as your M.D.

You and I should probably talk at some point.

RE: GBM 4

by Kevinflyscreens on Thu Sep 14, 2017 07:44 AM

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Hi Thank you for the reply,we live in southern Spain and sometimes the communication skills of the doctors who are very good could be better.Her plates did rise last week to 75000 then went back to 30000 and the last count a few days ago was 56000.I am hoping they are gradually going to go up,as this is the 3rd week since completing her 30 radio sessions and the 5 day maintenance would start next week.It does help reading of other people going through the same situaton.

RE: GBM 4

by MommaCat on Thu Sep 14, 2017 04:27 PM

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Which part of Southern Spain??  I worked there as a journalist on assignment in 1992.

By the way, there's been a clinical trial based in Madrid and another sister institute (I believe possibly in the Canary Islands) using cannabinoids.

Please shoot me your email address and I'll send the "Abstract" and other reports with data, if you like.

RE: GBM 4

by Kevinflyscreens on Thu Sep 14, 2017 04:30 PM

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We live in the murcia region and my email is

RE: GBM 4

by MommaCat on Thu Sep 14, 2017 05:38 PM

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Hey... your email address wasn't included in your reply to my message.

You might want try to try once again. 

RE: GBM 4

by LynnMaz on Mon Nov 06, 2017 03:31 AM

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My husband was diagnosed with gliosarcoma grade 4. I haven't been able to talk to anyone about this.  I've done a lot of reading on glioblastoma  though. Just trying to find out more info.

Lynn 

RE: GBM 4

by LynnMaz on Mon Nov 13, 2017 02:24 AM

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Hi Anthony,

He was violently throwing up, was getting these zaps in his right side, frontal lobe and had fainted. 

Lynn

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