Glioblastoma Multiforma Stage 4 Terminal Stage

My mother was diagnosed with glioblastoma multiforme stage IV on November 2016. Her doctors told us she had 9-18 months to live. Chemo, radiotherapy and even surgery wouldn’t be a cure for her, they said they would only make her given time more comfortable. The surgery would maybe add one or two months but no more, they told us there is no cure for that type of tumor and the result wouldn’t change. I always hoped for the best, thought she would be okay and we still had years together. But unfortunately, the doctors were right. I lost her o month ago, on 19th April 2018. She was 49 years old.

She had fought with the cancer so hard, she actually lived for 18 months. She hadn’t agreed to less, she really wanted to beat the cancer. But the tumor was aggressive and it spread so fast. First, she lost the ability of using her right side, she wasn’t able to use both her right arm and leg. Physical therapy wasn’t helping because the tumor was strong. She was on a wheel chair. She had her first surgery on 13th February 2017, because the tumor was bleeding inside. If they would be too late to notice , they wouldn’t be able to rescue her. But she survived after the surgery, but her body was refusing the chemo and radiotherapy because there were already a massive edema in her brain, radiotherapy caused more. And chemo made her thrombons break. So she couldn’t get any treatments but her medicine for her epileptic attacks. But there were nothing else for us to save her, we were just waiting for the worse.

And it happened, the tumor was bleeding inside again, and it kept spreading. She had her second, and last surgery on 13th February 2018, but she kept getting worse after that.

Slowly, she lost her ability to swallow food, drinking water, and then, talking followed them. She was just able to say the simple words like yes and no but nothing more. And she started not to recognize her own family members, she couldn’t even recognize me. She was constantly screaming, she had turned into a baby, she couldn’t do anything on her own she was basically paralyzed. She was just laying in bed all day and night, screaming for no reason. I must tell you that it was so hard for me to see her like that. I knew that she wasn’t in any pain because her doctors said the dosage of the pain killers and morphine she’s been on have made impossible to feel any pain for her. She had a pulmonary embolism which caused by her first surgery, it didn’t go away with medicine so she was hardly breathing, she was using oxygen tube when needed. But it kept getting worse, she got hospitalized because there were infection in her body. She was in intensive care unit for 18 days. She didn’t wake up for 4 days straight, when she first got there. She wasn’t be able to breath on her own anymore and they were feeding her through serums. She was like in a sort of a coma, even when she opened her eyes she couldn’t talk and her doctors said she couldn’t recognize us. She was unconscious. The last three days of her was hard because the doctors said we should be prepared but there is no way that anyone can be prepared for something like this. I’ve waited for her to be okay but i knew i had to let her go. Because i didn’t want her to be in any pain. I knew she was ready to go, and somehow I just felt like she was waiting for me to say my farewell. And I let her go. She passed away that night because her heart got weaken from not be able to breath on her own and the pulmonary embolism. Her heart stopped. 

I always believed that she was going to be okay, I wanted to believe that. It was hard to watch her dying everyday slowly so I refused to believe that she is going to die. But there is no cure for glioblastoma multiforme stage 4. We've tried everything to save her life, to keep her alive. Her doctors did everything they could do, but again, unfortunately there is no cure for this cruel tumor. The only thing you can do for your loved one is to make them feel comfortable and enjoy all the time you’ve left with them. Make them happy, make their all the wishes come true. I miss my mother everyday, and I always will miss her and I wish we had more time together. Every single second is precious and you shouldn't be wasting it. Take care of your loved one, but also take care of yourself because you'll need it. And when the time comes, just let them go. Because they will be ready.

 

Parents
  • Hello,

    I am very sorry to read your post. Its really heartbreaking to loss your dear one to this incurable desease. We all know that there is no cure to Gliablastoma Gr IV but we dont want to accept. I can relate to the different phases of your life since your mama was diagnosed with this. I am also going through the same situation.

    My wife was very energetic and lively person. She was diagnosed with it in May 2017. Our happy family just couldnt believe that this could ever happen to us. She had brain surgery followed by radiations and chemo cycles. Initially we were sure that everything would be alright and our happy normal life will back again. But she developped loss of balance, headeaches, nausia etc and mri revealed progrssion of cancer. Second surgery was done in Novemver 2017. They put her on dose dense Temozolomide. Seven cycles of 21 days each. My wife took all RT and chemo doses well. But this treatment could not prevent growth of tumor. She was referred to Medical Oncologist in May 2018, who gave her Avastin intravenously after every two weeks. Surprisingly her condition started to improve and she again started her walks, preparing breakfast, tea etc. She was doing all her works without our help. MRI showd reduction in size of tumor, adema was also reduced significantly. We were again relaxed and hopeful. She was so positive.

    Next MRI done after three months showed stable condition. Following report revealed some enhancement in size. Her condition gradually deteriorated. Avastin gave her six to seven months of near normal life. Dr. included Irinotican doses. But her condition is getting worse month by month. Her left hand and leg gradually bacame weak. Now they have become immobile. Her weight has increased due to continuous steroids and other medications. Now we have a tough time making her sit , shifting to wheelchair for taking to the dining table and washroom. They have started a new drug Carboplatin. Now that treatment has came to the end as the Dr has no other option but to change the drug after every few months. Her blood counts are normal. She speaks, talks on mobile, eats and sleeps almost all the time. She is only 47 and seeing her in this condition is really difficult for me and my only daughter. She has become so responsible and takes care of our home alongwith her studies. 

    Sometime I get disturbed and feel helpless and compare with others lives. But what can be done except to give her best treatment available knowing well inside that this can not be cured. What a fantastic lady she was two years back.

Reply
  • Hello,

    I am very sorry to read your post. Its really heartbreaking to loss your dear one to this incurable desease. We all know that there is no cure to Gliablastoma Gr IV but we dont want to accept. I can relate to the different phases of your life since your mama was diagnosed with this. I am also going through the same situation.

    My wife was very energetic and lively person. She was diagnosed with it in May 2017. Our happy family just couldnt believe that this could ever happen to us. She had brain surgery followed by radiations and chemo cycles. Initially we were sure that everything would be alright and our happy normal life will back again. But she developped loss of balance, headeaches, nausia etc and mri revealed progrssion of cancer. Second surgery was done in Novemver 2017. They put her on dose dense Temozolomide. Seven cycles of 21 days each. My wife took all RT and chemo doses well. But this treatment could not prevent growth of tumor. She was referred to Medical Oncologist in May 2018, who gave her Avastin intravenously after every two weeks. Surprisingly her condition started to improve and she again started her walks, preparing breakfast, tea etc. She was doing all her works without our help. MRI showd reduction in size of tumor, adema was also reduced significantly. We were again relaxed and hopeful. She was so positive.

    Next MRI done after three months showed stable condition. Following report revealed some enhancement in size. Her condition gradually deteriorated. Avastin gave her six to seven months of near normal life. Dr. included Irinotican doses. But her condition is getting worse month by month. Her left hand and leg gradually bacame weak. Now they have become immobile. Her weight has increased due to continuous steroids and other medications. Now we have a tough time making her sit , shifting to wheelchair for taking to the dining table and washroom. They have started a new drug Carboplatin. Now that treatment has came to the end as the Dr has no other option but to change the drug after every few months. Her blood counts are normal. She speaks, talks on mobile, eats and sleeps almost all the time. She is only 47 and seeing her in this condition is really difficult for me and my only daughter. She has become so responsible and takes care of our home alongwith her studies. 

    Sometime I get disturbed and feel helpless and compare with others lives. But what can be done except to give her best treatment available knowing well inside that this can not be cured. What a fantastic lady she was two years back.

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