GBM Grade 4

Daughter50

 

 

My mother has GBM grade 4. She had surgery in March. Did radiation with temadar. Now doing higher doses of temadar 5 days on 3 weeks off. MY mother is 80 years old. At the end of February she was completely independent. Driving, doing volunteer work, cooking, going out with family and friends. Now she has lost all abilities on her left side, cannot hold a conversation, has terrible short term memory. Doesn't talk on phone which was one of her favorite things to do. When I visit her she looks like my mom but it doesn't feel like she's there anymore.

How do I watch her lose herself?

Shenandoah2014

Daughter50

Dear Daughter50

I understand your grief. My Mom also is GBM Stage 4 and at 82 elected not to seek further treatment. She is now end stage and severely cognitively impaired. It's the toughest thing to watch. The only advice I can offer is just to love her ~ don't try to rationalize just love.

Shenandoah2014

Daughter50

Shenandoah2014 said:

Daughter50

Dear Daughter50

I understand your grief. My Mom also is GBM Stage 4 and at 82 elected not to seek further treatment. She is now end stage and severely cognitively impaired. It's the toughest thing to watch. The only advice I can offer is just to love her ~ don't try to rationalize just love.

Shenandoah2014

Thanks for your reply

Thanks for your reply Shenandoah. Can I ask you if your mom has done any treatment at all?  My mom has been doing standard treatment for 5 months now with no improvement. we knew this was a death sentence but thought we would get our mom for a little longer. 

akmom9101

Apologies

I hope you both don't mind me hijacking your discussions, but my mom also has grade 4 GBM...she'll be 54 in almost 2 weeks.  She was diagnosed two years ago after battling breast cancer.  When we first found out about the brain tumors we were told just to be glad it wasn't metastatic from the breast.  I am, I suppose, but GBM doesn't seem much better.  I'm new to this site and have just been looking around for other similar cases.  I pray for both of you and offer any encouragement I can.  After surgies, chemo, and radiation, she is now in ICU battling pneumonia.  She has been my best friend my entire life and I can relate to watching her lose herself.  I feel very selfish sometimes that she can't be there for me the way she always has been.  I just try to be there for her the best I can, while working and raising two children of my own... Thankfully my father was able to take early retirement to care for her full time.

Daughter50

akmom9101 said:

Apologies

I hope you both don't mind me hijacking your discussions, but my mom also has grade 4 GBM...she'll be 54 in almost 2 weeks.  She was diagnosed two years ago after battling breast cancer.  When we first found out about the brain tumors we were told just to be glad it wasn't metastatic from the breast.  I am, I suppose, but GBM doesn't seem much better.  I'm new to this site and have just been looking around for other similar cases.  I pray for both of you and offer any encouragement I can.  After surgies, chemo, and radiation, she is now in ICU battling pneumonia.  She has been my best friend my entire life and I can relate to watching her lose herself.  I feel very selfish sometimes that she can't be there for me the way she always has been.  I just try to be there for her the best I can, while working and raising two children of my own... Thankfully my father was able to take early retirement to care for her full time.

Sorry to hear about your

Sorry to hear about your mother akmom. I was wondering if your mom ever did Avastin as she has been fighting the GBM for 2 years.   I can relate to feeling selfish since I'm definitely older than you and still feel bad that my mom no longer calls me as she cannot hold a real conversation. Sometimes I think it might be better if we stopped with all this poison were putting in her body and let God take her. Nothing is working and I don't feel like it will. She has no quality of life. And at the same time I don't want to say goodbye to my mom forever. I lost my dad to heart disease two years ago.   I'm lost and sad and want my mom back to her true self. 

akmom9101

Daughter50 said:

Sorry to hear about your

Sorry to hear about your mother akmom. I was wondering if your mom ever did Avastin as she has been fighting the GBM for 2 years.   I can relate to feeling selfish since I'm definitely older than you and still feel bad that my mom no longer calls me as she cannot hold a real conversation. Sometimes I think it might be better if we stopped with all this poison were putting in her body and let God take her. Nothing is working and I don't feel like it will. She has no quality of life. And at the same time I don't want to say goodbye to my mom forever. I lost my dad to heart disease two years ago.   I'm lost and sad and want my mom back to her true self. 

So sorry

I am so sorry to hear that you lost your father as well.  This so easily could have been me, as a year before my moms diagnosis, my father survived a series of 8 heart attacks over a weeklong period.  I also apologize for not getting back to you sooner.  After my mom started improving this round, my grandmother fell ill and passed away.  We're not even sure which way is up right now.  In answer to your question, she has tried avastin.  That is what she was taking before the last tumors were diagnosed.  We were hopeful it was working, but she developed at least two new tumors after starting the avastin.  Not to say it would work for someone else, but it didn't seem to be doing the trick for her.  It made her very sick at first, but they were able to help that with, yes you guessed it, more meds.

She is now suffering from depression and some pretty severe anxiety attacks.  It sounds like we have a lot in common.  I am truly sorry for YOUR suffering as I can relate.  I am sorry for  your mother as well.  The brain is such a tricky place to have to deal with these tumors trying to steal our loved one. 

 

Daughter50

akmom9101 said:

So sorry

I am so sorry to hear that you lost your father as well.  This so easily could have been me, as a year before my moms diagnosis, my father survived a series of 8 heart attacks over a weeklong period.  I also apologize for not getting back to you sooner.  After my mom started improving this round, my grandmother fell ill and passed away.  We're not even sure which way is up right now.  In answer to your question, she has tried avastin.  That is what she was taking before the last tumors were diagnosed.  We were hopeful it was working, but she developed at least two new tumors after starting the avastin.  Not to say it would work for someone else, but it didn't seem to be doing the trick for her.  It made her very sick at first, but they were able to help that with, yes you guessed it, more meds.

She is now suffering from depression and some pretty severe anxiety attacks.  It sounds like we have a lot in common.  I am truly sorry for YOUR suffering as I can relate.  I am sorry for  your mother as well.  The brain is such a tricky place to have to deal with these tumors trying to steal our loved one. 

 

Wow. Sorry about your Grandma

Wow. Sorry about your Grandma akmom. We do seem like we have similar situations.  I hope your Dad is ok now!  My Dad struggled with heart disease for years. He died at 76 but had a great quality of life until the very end. Brain cancer is a much crueler disease!

So unsure of what to do! My mom has done 2 rounds of Avastin but hasn't been able to do the 5 days of Temodar for a while because of low count platelets. Now they want her to try Ritalin to help her be more alert. The last week she has declined further as far as seeming depressed, talking less and sometimes just staring.  Since I have brothers and sisters it's a group decision. I'm just going along with what doctors say but I feel like we should just stop with all aggressive treatments. Her diagnosis was in March and she has been declining since...  any ideas on this?  Anyone??

teresamasiello

Daughter50 said:

Wow. Sorry about your Grandma

Wow. Sorry about your Grandma akmom. We do seem like we have similar situations.  I hope your Dad is ok now!  My Dad struggled with heart disease for years. He died at 76 but had a great quality of life until the very end. Brain cancer is a much crueler disease!

So unsure of what to do! My mom has done 2 rounds of Avastin but hasn't been able to do the 5 days of Temodar for a while because of low count platelets. Now they want her to try Ritalin to help her be more alert. The last week she has declined further as far as seeming depressed, talking less and sometimes just staring.  Since I have brothers and sisters it's a group decision. I'm just going along with what doctors say but I feel like we should just stop with all aggressive treatments. Her diagnosis was in March and she has been declining since...  any ideas on this?  Anyone??

Treatments

My husband passed in March from GBM and we did the Avastin (10months), Temdodar(2months), and then went into research drugs that he wore this crazy electorade/scalp laser thing. Called Novo TTF(1). He was declining quickly after the Avastin stopped working. They told us once those first Teir drugs stop working there isn't much hope. I am so sorry and I know how diffcult it is. We kept searching even till day we put him into hospice whic was 8 days beofe he passed because we refused to stop trying.

Looking back we wished we would have enjoyed our finaly moments together but at the time it's what felt right for us. So my advice for you is do what is RIGHT for your family. 

 

Daughter50

teresamasiello said:

Treatments

My husband passed in March from GBM and we did the Avastin (10months), Temdodar(2months), and then went into research drugs that he wore this crazy electorade/scalp laser thing. Called Novo TTF(1). He was declining quickly after the Avastin stopped working. They told us once those first Teir drugs stop working there isn't much hope. I am so sorry and I know how diffcult it is. We kept searching even till day we put him into hospice whic was 8 days beofe he passed because we refused to stop trying.

Looking back we wished we would have enjoyed our finaly moments together but at the time it's what felt right for us. So my advice for you is do what is RIGHT for your family. 

 

Cerebral atrophy

Now the latest results from MRI last week shows no growth in tumor but my mom has rapidly progressive cerebral atrophy! dr said its not related to GBM. HES STUMPED AND WE SHOULD ASK NEUROLOGIST!  Has anyone heard of this happening?  I feel like my mother's biggest decline was from radiation. Things keep getting worse.  AFRAID HOME AID WILL QUIT as job is getting tougher as mobility worsens. HELP!!!!

amsk20

Banerji Protocol

My boyfriend was recently diagnosed.   Wee are trying the Banerji Protocol using Ruta.  Does anyone have any experience with this treatment?   He is also most likely starting chemo and radiation in Less than a week.

Daughter50

GBM end of life

I felt the need to log onto this site one last time.  I lost my mother Feb. 6th to GBM.  She was diagnosed 11 months ago.  It has been the worst experience of my life.  She is at peace now but I miss her terribly.  She was 80 years old but was perfectly healthy.   Some of you may have read my previous posts.  After standard treatment, we decided it was time for hospice care as she was only getting worse.

I wish all of you out there the best.  Younger patients seem to do better and they are working on new treatments all the time.

Take care of yourselves.  Enjoy life!  It is way too short.

Daughter50