Diagnosed Feb 2012 with GBM 4. On Temodar and Avastin regime. Feeling very sore (specifically arms and legs), fatigued, irritated, and unmotivated. What is happening to my loved one? Is this something to expect as caregiver? Suggestions are welcome.

Report post

2 replies. Join the discussion

My in December ,not too faf from when yours was. husband diagnosed with either astrocyma 3 or gbm4 (they coldnt agree mr radiologist and the neorsugeion) MY husband had tons of fatigue coming out of surgery you didnt say if he had the surery or just the chemo, im assumin git owuld be su;rgery. But mine did not have chemo or radiation or anything yet( I doubt we will since he has so much other ne;urological deficts, aspeially recently) Hes had major speech loss, then regained it durong rehab, then lost it again. Also recently graual personality changes, whcih i thinkl correlagte with the latest mri showing the ting mving closer to the frontal lobe as aopposd to just the let parietal. Perhaps your s is also ion antiseizures from brain siurgery. Believe me, those casue some major faitgue as weill, for most people. The soreness should be checked out by a good physical thrapist. we got one automaticlaly becasuee my husbands tumlur was so badly located right in themotor cor d that he lost hisability t walk very well. So depending on the stage of his rumor regrowth (you knwo how these tumours like to do that regrowwing thing, or even scar tissue, can press on nerbes responsbile for motor movement, depending on where in the brain his was. If he ddnt get surgery,l maybe its just the chemo treatmentst I got alot of extreme irritable behavious very unlike him in the hospital just post surgery, alot ocming out of su;rgery, then those koind of went away as he got better. Now I see the tumour growing back toward the frontal lobe (look that up) and Im aslo noticing very negative, flat, fixating on things, scaring into space, not outright hostililty or amnesia thank goodness but negative just the same. Im thiking thisis all the wok oof the dandy frontal lobe, from what Ive been reading. But dont call me an exprnt. I hope as a caregiver, ;you can try to be positve with him. I have found this no easy task, especially lately. Do you have kids.IF ou do, sometimes it helps to rem;ind them how the negativity can affect them and their fitre. Onthe other hand the speech therapists (who by the ways know more about how this brain atially presents or acts in real life than the neruogurgeions, so maybe go to one even if he doesnt have speech problems. Its all related) try to tell me he can oly handle so uch since his brain ins healing. Of course she doesnt have to actually live wiht someon like this. Alot of these posts confirm that its often pure hell for the caregiver, not tp negate the horribole journey the loved one moust themselve be on. The wierd thing about this frontal lobe is that the husband doesnt seem to be aware of their behaviors until you tell them. IF I was you I would be happy if the physical limitations are minimal, but dont underestimate the problems with communication. YOur marriage must be strong and get him to look you in the eye and try to help him a apositve way. I tell mine that I hate talking to you like some behaviourm odificatiion therapist all the time, bu Alos recently getting alot of unmotivation. Not sure if its the frontal lobe becaseu he was extremely motivated with trapy and c reative porjects even housework aor whateer he could try to do every day no matter how redundant or hard. Noww hes semems to be not motivated at all. Im proably going to get reffered to a neruoloigst once the gp sees him next week. Ugh. How do we coordiante all these doctors. Consumers reopsrts ranks the hospitals aand doctors at lousy at coordinateing all this care even the beset dorctors and hospitals. Us brain surgery brain tumour people hsae to carry a big notebook around with who he saw for what when and why and what the other doctor seadi and that doctor put him on this becauseof this but he didnt know that the other doctor thougth it was this.......... GOod luck, dont give up no matter what. Look tor ead some of the post I saw recently from the patient himself or herself who said it took a good lyear to recoer and become more like themselves. I was relieved to read that and nteed to tell my family to read it. The realtives and freidns sdont get that this healing takes so so long and can get worse before it gets better, Hoopefully not too worse. Take care of yourself and write sometime love will get us throiugh or a highrer power or a dog or a good friend who has a similar situation. ODnt give up, ever on your loved one,keer. NOone should go through this alone. My mental husband I call hi that lately,reached out and grabbed my h and eve thoiugh he was all spacy tinit. THats after a terrible night last night. Now that is worth everything to me. He needs me, I need him, my duagher still needs somting of a father, thogh he may never be the one she knwe before. t Pat eventually youll get better and youll be back to yourself. Meanwhile I have to do this so I can stay positve for my chjild. etc.well take care

Report post

Please look at a lot of what has been written in GBM4 Related. so much information from the caregivers. I know you've been there go to the beginning and start reading. i will help if i can, Ty

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Support ABTA

Together with your help, the American Brain Tumor Association will fund more research and reach more people, with the shared goal of improving, extending and ultimately saving lives. With your gift, those coping with a brain tumor diagnosis will know -- more than ever -- that they are not alone.

Donate to the American Brain Tumor Association

Discussion topics

More from ABTA

Community leaders