Lost- A journey with GBM

10 Posts | Page(s): 1 

Lost- A journey with GBM

by kamckenna on Sun Sep 09, 2012 07:04 PM

Quote | Reply

Hello Everyone, I have been reading this board and wish I would have found it sooner. It could have helped me to talk with others about this horrible disease! First off let me say each one of your stories have touched me in someway those who are fighting to beat this diease and others who have sadly lost loved ones. I want to share my Mom's journey with the disease because when she was first diagnosed we knew nothing about it. My siblings and I searched the internet daily looking for ANYTHING that could help my mom fight this disease. Let me begin with a little background. In 2008 my Father passed at the age of 52 to a brain anyuerisim it was sudden he was here on friday and passed that saturday night. My mom and him had been married for 29 years and it was a devestating blow to me and my family. I am currently 27 years old and he passed when I was only 23. Somehow my family managed to pick up the pieces and move forward, until March 30 2011.

On this date my mom started experiencing numbness on the left side of her body. She couldn't understand where it was coming from. So she got dressed for work that morning and decided whatever was going on wasn't a normal thing because it would not go away. So she drove to my sister's house and asked her if she could take her to the hospital because she was worried. So my sister took her to the hospital I left work and went right over. When we got there the Dr's decided to do a CT scan of the brain (for possible stroke). Little did we know what they were gonna come back with next. When the results finally came in they told us she had a mass on her brain on the right temporal lobe. They couldnt tell us if it was malignant or not but they needed to send her to another hospital University. Now, this hospital was scary for us as we lost our father in this same hospital 3 years earlier. So we took her down to university and they proceeded to do an MRI and full body CT scan to see if the tumor was primary or secondary. When they did this they then told us that the tumor my mom had was indeed GBM. We were all devestated to have to go through this with her she was only 51 years old. The Dr. said that there is not a cure it always comes back in most cases and the life expectancy is 2 years. She had surgery to remove the tumor 3 days later and went into recovery for 1 month. We all took our turns spending the night at her place so she wasn't ever alone (she was also in the process of selling her home). In May of that year she began radiation and Temador. After being on temador for 1 month they took her off due to low platelets, low white blood cells and all of her other counts were way off. She continued with radiation until July, However, the radiation was causing massive back pain. she couldn't shake it it was terrible to see her in that much pain. So they contiuned to keep her off temador. After radiation in August she went back in for a follow up MRI. That MRI showed no sign of recurrance. We were all so thrilled to hear this news her and I both cried on the phone with happieness. As the months went on all of MRI's were negative and her numbers were going back up except for her platelets. They Dr. couldn't understand why. She then had to go in for a bone marrow test. I will tell you it was so hard to watch her go through this she was crying with pain. why they don't put you to sleep for this is beyond me! The results from that came back normal. No Leukimia. 

After that test was another MRI in November everything was going great, I got engaged that month she was starting to act like herself again. Until the monday after thanksgiving. We got the news that the tumor had returned. She was so devestated she cried and screamed why is this doing this to me. I felt the same way. Why did it pick her? Doesn't God understand this is the only parent I have left? why does he want my parents so bad and so young? We decided to put her on avastin at that point and see if it would cause and shrinking. she began treatment in early december and continued until March of 2012. They did another MRI in February to see how the tumor was responding. In the report they noticed significant shrinkage. She was estatic we all were! Until March of this year she began having numbness in her left side again and drooping of the face. We instantly thought stroke. However, the Dr. said the tumor was now unresponsive to the avastin and it was no longer nessecary to continue treatment. She was having massive swelling and it had crossed the mid-brain which ruled out surgery. I knew at that point it was definatly time to start preparing for the worst. The Dr. said there was nothing more to be done and she would not make it another year. So from that point on we just decided to let her live out her life however she wanted to. She was then put in Hospice care from that point on out. In april she began losing the ability to walk on the left side of her body. each week it would get dramatically worse. She was falling all the time and depressed. As we got into may Walking became more and more difficult until it was determined we had to put her in a wheel chair. She kept talking about things that were not there, she was eating like crazy, mostly due to the steriods she was taking. I kept her with me everyweekend I helped her shower, dress, get her in and out of the car feed her. take her out. Her care ended up becoming a 3 man project I needed my now husband, to carry take her up to the bathroom. She hated that she was this way. I felt so bad that I couldn't help her more. As we neared the end of May she started getting massive headaches like were as painful as a 10. She was getting sharp pains going through the right side of her leg, The tumor was starting to take over the right side of her body now. We then had to put her on oral morphine to help contral the pain. She started feeling pretty good. The first weekend in june was the last weekend she was able to come and stay with me and my brother at my house. The crazy thing is the nurses all told us she had about another 6 weeks left. But my brother and I knew this wasnt true. She was going so fast and it was scary. That monday morning when she left to stay at my grandma's (her mom's) house I hugged her and told her I loved her, she said she loved me back. She did the same to my brother. She cried and so did we she knew this was the last time she would see us. That following Tuesday I was getting updates that she wouldn't get out of bed, she wasn't eating at all. They finally got her up and out right before I got there and she couldn't even open her eyes to see me. She patted my face she knew I was there. We put her back in bed to rest. She could no longer swallow food. When I left that night to go home I knew something was very wrong. The hospice nurse just said her vitals were good and strong and she was ok. The next morning I had gotten a call at work that she was having a stroke. I rushed out of work and drove as fast as I could to my grandma's house. By the time I had gotten there she was gone. I had never felt so lost in my whole life to realize she would not ever see me get married (which was the next month) see my children. She was my best friend she knew me better than anyone. She is with my dad is what I kept telling myself but it wasn't fair she was only 53. 

I write this story not to scare or upset anyone but to let anyone out there know who has gone through this. You are not alone. My mom was a beautiful soul inside and out and she is no longer suffering. Selfishly I want her back but she is much happier now with my dad where she wanted to be the day he parted. All I wanted was for someone to help me understand and to find a story that could relate to mine. For those of you still fighting this battle keep fighting! Done let this horrible disease win! I hope they find a cure for this so no one else has to endure the pain that I had to when GBM took my mom! 

RE: Lost- A journey with GBM

by ravirajagopalan on Sun Sep 09, 2012 09:30 PM

Quote | Reply

Hi there, sorry to hear about your mom. Wish you the best in dealing with this and good luck in your marriage.

 

For background, my wife was diagnosed with GBM last September (it will be one year on the 15th), had surgery, radiation and chemo. Hoping for the best in our case - and for all those who are dealing with GBM.

RE: Lost- A journey with GBM

by john.f on Mon Sep 10, 2012 12:37 AM

Quote | Reply

After reading that my heart just sank. My family is going thru this also. We are still at a good place at this point and heading to Duke for a 2nd opinion on what to do next. Hang in there I fear the same thing as your going thru myself. I just keep saying this.

Always look on the bright side of life and I start to whistle the tune and sign along!

john

RE: Lost- A journey with GBM

by oakisland on Mon Sep 10, 2012 01:42 AM

Quote | Reply

We just ended our journey aslo. Ours only started in May and ended in August. But it will never end. I love and miss My Rog so bad . Brain Cancer Sucks, no matter who you are . He was only 53 too.  Left us all here to want him back. We went to the best University ..The Preston Robert Tisch Brain Tumor Center, came back with the same plan that the local dr had and advised against. I hope and pray that there is something besides radiaton, temador and avastin out there. Find a cure!!!Please.. Don't let anybody else lose what I have lost.

RE: Lost- A journey with GBM

by mollie924 on Mon Sep 10, 2012 02:39 AM

Quote | Reply

You are right - you are way to young to have lost both of your parents in such a short time.  My sister's husband passed away from a massive heart attack.  There was no time to say good-bye or talk about how much the family loved him.  Sometimes I think that losing a loved one that way is worse than having the time to tell the person how much they have meant to you all these years and spending time together. My husband and I spend alot more time together because I want to have those memories. One thing I would recommend is that you get grief counseling.  I think it would be a big help. 

RE: Lost- A journey with GBM

by Ducks-n-Row on Mon Sep 10, 2012 02:19 PM

Quote | Reply

Kamckenna,

As another stone is tossed into the still pond, the ripples are felt by all........

HOPE

Damon

Dx Nov 07......no regrets

RE: Lost- A journey with GBM

by loveiseternal on Mon Sep 10, 2012 11:51 PM

Quote | Reply

So sorry that you have lost both of your parents and that your mom had GBM.

I lost my husband in June and my two sons, ages 14 and 11, lost their father.  Read my profile for the gory details.  We went through the same roller coaster you did--up and down, up and down. 

I think that the treatments for GBM are harsh and inadequate.  My husband had one good week a month on temodar and he was completely miserable on Avastin.  The long term efffects of the decadron were terrible, so much so that he weaned himself off of it even though he knew that it probably meant that he would have less time. 

Better treatments and a cure are solely needed.  I have been praying to God, Randy (my husband), and St. Jude (the patron saint of hopeless causes) that there would be a major breakthrough for GBM soon.  Stories like yours break my heart but I have much empathy.  I told someone that I felt like my heart was being broken over and over again, and the pieces of my heart that were laying around were being ground down to sand.   That was how hard it was!  But like you, I am glad that he is no longer suffering. 

Let's all pray for a cure!  I plan to do some fundraising for GBM research as soon as I recover and regain my strength.  God bless you in your healing.  I'm sure both of your parents are watching out for you,  Sally 

 

RE: Lost- A journey with GBM

by Jaxees on Tue Sep 11, 2012 02:29 AM

Quote | Reply

We just found out today that my FIL has IV GBM... what's scary is his symptoms are what most discribe as end stage. It happened almost over night, the Drs thought he had a massive stroke. That was Friday. They biopsied Friday, sent him home Saturday, told him to come back in today... and he was told there is no treatment and he was giving 6 months as a time frame. His tumours are massive with the biggest being  in the thalamus. He can not use his left side, needs to be carried up stairs, within 36 hours, he can not stand on his own and has trouble forming some words. he has lost a drastic amount of weight already.
  On top of this I just found out 3 weeks ago my mom has 12 brain tomuors that spread from her supposedly cured lung cancer.
  Both are just 71. This seems so surreal.

    Original poster, so sorry for your loss... your parents were so young. :(

RE: Lost- A journey with GBM

by CarmensWife on Tue Sep 11, 2012 06:36 PM

Quote | Reply

Kamckenna,

You story was so very beautifully written, your mother was a lucky woman to have had a daughter as loving and caring as you. I am just truly sorry that you lost your mother to this monster. I am doubly sorry that you also lost your dad.

My heart is breaking for you, you are so young. and you sound like until a few years ago, life was wonderful for you and your family.

Ill keep you in my prayers, as Im sure you have a rough road ahead of you. Honey, i wish i could say something to ease your pain, but no words can. God Bless you and your family, and i am so sorry.

In it together,  Linda

RE: Lost- A journey with GBM

by Mimione on Sat Sep 15, 2012 06:58 AM

Quote | Reply

On Sep 09, 2012 7:04 PM kamckenna wrote:

Hello Everyone, I have been reading this board and wish I would have found it sooner. It could have helped me to talk with others about this horrible disease! First off let me say each one of your stories have touched me in someway those who are fighting to beat this diease and others who have sadly lost loved ones. I want to share my Mom's journey with the disease because when she was first diagnosed we knew nothing about it. My siblings and I searched the internet daily looking for ANYTHING that could help my mom fight this disease. Let me begin with a little background. In 2008 my Father passed at the age of 52 to a brain anyuerisim it was sudden he was here on friday and passed that saturday night. My mom and him had been married for 29 years and it was a devestating blow to me and my family. I am currently 27 years old and he passed when I was only 23. Somehow my family managed to pick up the pieces and move forward, until March 30 2011.

On this date my mom started experiencing numbness on the left side of her body. She couldn't understand where it was coming from. So she got dressed for work that morning and decided whatever was going on wasn't a normal thing because it would not go away. So she drove to my sister's house and asked her if she could take her to the hospital because she was worried. So my sister took her to the hospital I left work and went right over. When we got there the Dr's decided to do a CT scan of the brain (for possible stroke). Little did we know what they were gonna come back with next. When the results finally came in they told us she had a mass on her brain on the right temporal lobe. They couldnt tell us if it was malignant or not but they needed to send her to another hospital University. Now, this hospital was scary for us as we lost our father in this same hospital 3 years earlier. So we took her down to university and they proceeded to do an MRI and full body CT scan to see if the tumor was primary or secondary. When they did this they then told us that the tumor my mom had was indeed GBM. We were all devestated to have to go through this with her she was only 51 years old. The Dr. said that there is not a cure it always comes back in most cases and the life expectancy is 2 years. She had surgery to remove the tumor 3 days later and went into recovery for 1 month. We all took our turns spending the night at her place so she wasn't ever alone (she was also in the process of selling her home). In May of that year she began radiation and Temador. After being on temador for 1 month they took her off due to low platelets, low white blood cells and all of her other counts were way off. She continued with radiation until July, However, the radiation was causing massive back pain. she couldn't shake it it was terrible to see her in that much pain. So they contiuned to keep her off temador. After radiation in August she went back in for a follow up MRI. That MRI showed no sign of recurrance. We were all so thrilled to hear this news her and I both cried on the phone with happieness. As the months went on all of MRI's were negative and her numbers were going back up except for her platelets. They Dr. couldn't understand why. She then had to go in for a bone marrow test. I will tell you it was so hard to watch her go through this she was crying with pain. why they don't put you to sleep for this is beyond me! The results from that came back normal. No Leukimia. 

After that test was another MRI in November everything was going great, I got engaged that month she was starting to act like herself again. Until the monday after thanksgiving. We got the news that the tumor had returned. She was so devestated she cried and screamed why is this doing this to me. I felt the same way. Why did it pick her? Doesn't God understand this is the only parent I have left? why does he want my parents so bad and so young? We decided to put her on avastin at that point and see if it would cause and shrinking. she began treatment in early december and continued until March of 2012. They did another MRI in February to see how the tumor was responding. In the report they noticed significant shrinkage. She was estatic we all were! Until March of this year she began having numbness in her left side again and drooping of the face. We instantly thought stroke. However, the Dr. said the tumor was now unresponsive to the avastin and it was no longer nessecary to continue treatment. She was having massive swelling and it had crossed the mid-brain which ruled out surgery. I knew at that point it was definatly time to start preparing for the worst. The Dr. said there was nothing more to be done and she would not make it another year. So from that point on we just decided to let her live out her life however she wanted to. She was then put in Hospice care from that point on out. In april she began losing the ability to walk on the left side of her body. each week it would get dramatically worse. She was falling all the time and depressed. As we got into may Walking became more and more difficult until it was determined we had to put her in a wheel chair. She kept talking about things that were not there, she was eating like crazy, mostly due to the steriods she was taking. I kept her with me everyweekend I helped her shower, dress, get her in and out of the car feed her. take her out. Her care ended up becoming a 3 man project I needed my now husband, to carry take her up to the bathroom. She hated that she was this way. I felt so bad that I couldn't help her more. As we neared the end of May she started getting massive headaches like were as painful as a 10. She was getting sharp pains going through the right side of her leg, The tumor was starting to take over the right side of her body now. We then had to put her on oral morphine to help contral the pain. She started feeling pretty good. The first weekend in june was the last weekend she was able to come and stay with me and my brother at my house. The crazy thing is the nurses all told us she had about another 6 weeks left. But my brother and I knew this wasnt true. She was going so fast and it was scary. That monday morning when she left to stay at my grandma's (her mom's) house I hugged her and told her I loved her, she said she loved me back. She did the same to my brother. She cried and so did we she knew this was the last time she would see us. That following Tuesday I was getting updates that she wouldn't get out of bed, she wasn't eating at all. They finally got her up and out right before I got there and she couldn't even open her eyes to see me. She patted my face she knew I was there. We put her back in bed to rest. She could no longer swallow food. When I left that night to go home I knew something was very wrong. The hospice nurse just said her vitals were good and strong and she was ok. The next morning I had gotten a call at work that she was having a stroke. I rushed out of work and drove as fast as I could to my grandma's house. By the time I had gotten there she was gone. I had never felt so lost in my whole life to realize she would not ever see me get married (which was the next month) see my children. She was my best friend she knew me better than anyone. She is with my dad is what I kept telling myself but it wasn't fair she was only 53. 

I write this story not to scare or upset anyone but to let anyone out there know who has gone through this. You are not alone. My mom was a beautiful soul inside and out and she is no longer suffering. Selfishly I want her back but she is much happier now with my dad where she wanted to be the day he parted. All I wanted was for someone to help me understand and to find a story that could relate to mine. For those of you still fighting this battle keep fighting! Done let this horrible disease win! I hope they find a cure for this so no one else has to endure the pain that I had to when GBM took my mom! 

Hello, Just wanted to say how very sorry I am for your loss. I lost my mom to this disease one month ago today. She passed away exactly two months after diagnosis. It is a horrible disease for both the patient and the family. My thoughts and prayers go out to you.
10 Posts | Page(s): 1 
Subscribe to this message board discussion

CancerCompass Survey

If you were considering traveling for cancer treatment, which headline would you find more interesting?

Get $75 for taking a research survey

We care about your feedback. Let us know how we can improve your CancerCompass experience.