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Glioblastoma IV

Shauna8
Posts: 1
Joined: Sep 2017

My dad (76) was diagnosed February 2017 with inoperable GBM stage IV. He completed 6 weeks of radiation and chemotherapy and although weak and fatigued, tolerated it well. He was on Temzolomide as maintainace and had a COPD exacerbation that hospitalized him. Before this he was ambulatory but slept most od the day.  He came home with oxygen and could not do anything for 2 weeks but feed himself with set up.

He has improved, no longer needs continuous oxygen but has had 4 falls in a short time. He has memory loss so doesn't realize he can't walk without assistance and even then requires maximum assistance. We finally got a hospital bed for safety. I also put him on home hospice for more support as it's been a lot trying to maintain 2 households. 

 

He was due his one week of Temzolomide when he got sick. It's been 3 weeks and I haven't given it to him because it took so long for him to gain his strength and his baseline has changed for the worse . He communicates but not always appropriate to the occasion, laughs at times but often stares with a flat affect.  I'm torn between quality of life versus prolonging life. He was awake more where the chemo will make him sleep more. July MRI showed it grew a little before his hospitalization bit he still declines cognitively.  

 

Without any treatment he will decline quicker. My brother and niece that assist me feel as I do that he is more alert although his cognition is slowing down weekly. I don't know what to do. He has not had headaches since diagnosis nor seizure activity. He is peaceful for the most part so that is some consolation but I struggle...

 

USZ2S20
Posts: 1
Joined: Oct 2017

MY DAUGHTER WAS DOING WELL UNTIL SHE TRIED A NEW THERAPY CALLED PD-1 INHIBITOR PEMBRIZOLAMAB.  She suffered severe edema and was talking gibberish by the time we brought  to the LOCAL emergency department.  She had to be helicoptered to our hospital in a nearby city where her neurology team is located.  She has been in ICU for 5 days.  She has been getting progressively better symptom wise; however, today after a follow up MRI they seem to think that the swelling has not changed and that the tumor has grown a lot from when she her last MRI was completed about 6 weeks ago.  IT IS BAFFLING WHY SHE SEEMS TO BE BETTER AND HAS GOTTEN OUT OF BED AND SAT IN A CHAIR TODAY, EATEN SOME FOOD THAT A FULL LIQUID DIET ALLOWS (FOLLOWING HER AIR TUBE removal yesterday). Does anyone have any experience with PD-1 inhibitor (Pembrizolamab) working like this or someone reacting like this to it?  Can anyone explain the contradiction of the MRI and what she exhibits as a drastic improvement in symptoms?

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