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My mom had a Glioblastoma Grade 4

moonwitch's picture
moonwitch
Posts: 3
Joined: Sep 2012

My beautiful amazingly strong mom, 48, had a seizure July 2 2012 and was rushed to emergency where they found her brain tumor. She had surgery on July 14 where they removed most of the tumor and was diagnosed with a Glioblastoma stage 4 Aug 15. Started chemo/radiation aug 22 and completed one out of six weeks of treatment when she became incredibly sick. As her caregiver I made her go to emergency, even though she didn't want to. Her tumor had doubled in size since her surgery. They told me my mom had days or weeks left to live. She was in the hospital for 3 days loosing her mind. She couldn't formulate sentences correctly or get out of her bed anymore. She kept talking about deceased relatives and pets in the room. She also told me she would die on sept 11. I decided to take her home with hospice and she died two days later on Sept 11, 2012. My mom was my best friend, I'm 26 and am happy she's not suffering anymore but I miss her very much. This is an EXTREMELY aggressive disease and the treatment only made her quality of life worse in my opinion. She had a very positive attitude up to her last waking day and I am sorry for anyone who has to deal with this monster. Did anyone else loose someone they were caring for? Did they have any premonitions of their passing or see loved deceased ones surrounding them days before they passed?

Callista7's picture
Callista7
Posts: 6
Joined: Jul 2012

Hi moonwitch,

I am so very sorry to hear about your mom, this is such an terrible disease.my mom and I are going through a similar situation right now, she is the most amazing person that I know and so strong and positive and doesn't deserve this as of course your mom didn't either. She is only 56 and I am 25, and she was very healthy before all this happened and working as a nurse. She started having really weird symptoms during the last few days of April, and then had a mini seizure right in front of me so i rusehd her to the ER...where they found a mass in her brain. She was transferred to SF where they diagnosed her with Glioblastoma Stage 4, had surgery and started chemo and radiation soon after...in her follow-up MRI they found that the tumor had grown much bigger so the surgeon decided to operate again....she had a stroke during the second surgery and lost most of her ability to speak, most of the vision in her right eye and gets confused a lot easier than before....it's still her in there even though her personality is drastically different now. About 3 weeks ago, the doctor told us that in reviewing her case, he estimated she had a year left if she is lucky before she is bedridden or worse. I am so sad and angry that this has happened. She decided against continuing chemo because of the prognosis and wants to just enjoy life as much as possible...she is getting weaned off a brain steroid right now and has had almost no energy and just sleeps all day and night. I just wanted to say that I'm so sorry that you and your mom had to go through this. My mom does talk about her mom a lot who died of breast cancer when I was young and her dad who died late last year. I really just want to make her as happy as possible during this time...and I hope that she keeps her positive attitude up just like your mom did dealing with this horrible cancer.

Callista7's picture
Callista7
Posts: 6
Joined: Jul 2012

Hi moonwitch,

I am so very sorry to hear about your mom, this is such an terrible disease.my mom and I are going through a similar situation right now, she is the most amazing person that I know and so strong and positive and doesn't deserve this as of course your mom didn't either. She is only 56 and I am 25, and she was very healthy before all this happened and working as a nurse. She started having really weird symptoms during the last few days of April, and then had a mini seizure right in front of me so i rusehd her to the ER...where they found a mass in her brain. She was transferred to SF where they diagnosed her with Glioblastoma Stage 4, had surgery and started chemo and radiation soon after...in her follow-up MRI they found that the tumor had grown much bigger so the surgeon decided to operate again....she had a stroke during the second surgery and lost most of her ability to speak, most of the vision in her right eye and gets confused a lot easier than before....it's still her in there even though her personality is drastically different now. About 3 weeks ago, the doctor told us that in reviewing her case, he estimated she had a year left if she is lucky before she is bedridden or worse. I am so sad and angry that this has happened. She decided against continuing chemo because of the prognosis and wants to just enjoy life as much as possible...she is getting weaned off a brain steroid right now and has had almost no energy and just sleeps all day and night. I just wanted to say that I'm so sorry that you and your mom had to go through this. My mom does talk about her mom a lot who died of breast cancer when I was young and her dad who died late last year. I really just want to make her as happy as possible during this time...and I hope that she keeps her positive attitude up just like your mom did dealing with this horrible cancer.

biodeb
Posts: 5
Joined: Oct 2012

Hi Moonwitch,

Thank you for sharing your mom's story. My daughter was diagnosed with a GBM last August. She is still with us and doing okay for now. It's always scary and we don't take any day for granted.

I haven't experienced it first hand but I have heard often that people sometimes know when they will pass into eternity and they see loved ones prior to going. Some people see angels and other heavenly beings - I've heard they are at peace when they go because they see something we can't see - eternity.

I don't want to think of my daughter going to heaven before me but I know she's ready to go when the time comes.

I know how much you loved your mom, it must have been so difficult to part with her. You will see her again.

God bless you and your mom's memory.

amsan1724
Posts: 7
Joined: Jul 2012

My sister was a vibrant, healthy woman until May 29 when she became extremely dizzy, had speech difficulties, and couldn't move her right arm and leg. She was taken to ER where they said she had a brain mass. It was later diagnosed as grade 4 GBM. She has had two seizures, a very new procedure called Auto-LITT, and completed 6 weeks of chemo and radiation. She is now bedridden, but has been slowly coming around. She is in a rehab facility at present where we hope she can at least walk with a walker and come home. She is confused, shouts, and talks of odd things at times. Her tumor could not be removed, the Auto-LITT "cooked" it. She will have her first post-treatment MRI on Oct. 10. We are praying the tumor will be gone. Her oncologist believes because of her behavior, she may not be able to do further chemotherapy (Avastin). Again, we are praying there will be no need for it or that she will be strong enough to endure it. At this point, her life has not been very good since her diagnosis. She has spent more time in hospitals and rehab centers than at home. We are in St. Louis, MO, which has a renowned teaching hospital and Siteman Cancer Center. Top-notch doctors and one of two that performs the Auto-LITT procedure (Cleveland Clinic is the other). A 29 year old father in my town died yesterday of GBM. It is a ruthless and cruel disease. I pray for all who are battling this demon.

thebeast447
Posts: 2
Joined: Sep 2012

September 4 2012 i was a little off balance then the next day i got a little confused headahe the next and that friday i lost some coordination. I had aurgery on the 10th of september to remove a 6 cm tumor which turned out to be GBM. I was released on the 15th of september and havw been non stop reading hooking up with support getting educated if you get gbm keep positive and fight non stop my treatment starts october 8th 6 weeks 5 days a week of radiation with cemo (temodor ) starting at the same time at the end of 6 weeks scan and continue cemo lets see how the scan goes

Seenie44
Posts: 2
Joined: Nov 2012

Hello.
My grandma (who is very dear to me and like a second mother) was diagnosed with GBM at the end of January. Doctors did not have much hope for her and did not want to do any treatment (such as radiation or chemo). We decided to give radiation a chance so that we have at least tried something. Doctors were impressed at how much better she was looking when her radiation appointments came around and later tried Chemo during June-August. Chemotherapy did not work for grandma and she is currently trying a different drug called Avastin. It is getting harder now because grandmas left side is paralyzed and she can it get in and out of bed. What is surprising though is the amount of energy she has to keep talking. We found that havin a stron support group (in my case my family) we have been able to expand my grandmas life. It is a hard disease to live with for the patient and the patients family. We just take each day as blessing of having her still her with us. This is her this type of cancer she has battled( all 25 years apart in different locations).

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