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.

 

  • Hi there, 

    l’m really very sorry for your loss l can’t imagine what you have been through that’s horrific l do understand as my own Mum also has Cancer - Non-Hodgkins lymphoma she was diagnosed in Feb 2017. It’s so hard to see your Mum suffering like that l wouldn’t wish it upon anyone. Your Mum fought a brave battle with her stage 4 Glioblastoma l have read about this Cancer it’s horrific. 

    My mum has also been through Chemo and been hospitalised on numerous occasions with Sepsis she was in so much pain it broke my heart to see her like that she’s had Radiotherapy too earlier this year but sadly the Cancer hasn’t gone and l don’t know what else they will or can do it’s high grade which is aggressive we have been told it’s not curable as the chemo hasn’t got rid of it. 

    We can only help our loved ones at a time like this but no one knows how it feels unless you have been through it yourself like anything in life. I agree every moment is precious so we have to cherish it and enjoy it as much as we can. It’s really difficult though l am hoping my mum will be around for a long time to come and just pray that the Cancer doesn’t get worse. 

    Your Mum would be so proud of you supporting her through all that. 

     

     

  • 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.

  • It's very sad to read your writing, particularly for me because I have the same kind of tumor (apparently). In a week, they are going to tell me the result of the second biopsy. However, I read in the face of the doctor that is going to be grade 4 rather than grade 2. Almost three months ago, I was to the gym and I fell unconscious.I was intubated for a week before being told of a possible tumor. The first biopsy told me the worst one could ever listen and read: Gliobastoma.  The strange part of this is that, once discharged from hospital, I can lead a normal life. No symptoms at all for the time being. Do they start all of a sudden? 
    Thanks for reading.

  • Hello Dear

    First thing is that every person suffering from this has a different story to tell. I am saying this on the basis of our  own experience and my frequent conversations with the family members of those undergoing treatment in same hospital. I have been reading a lot on Glioblastoma since last two years years. 

    Everything depends on the overall health and the location of that thing. Positive attitude and strength are ones best friends. So do not worry about symptoms etc. My wife never had any seizures during this period and taken all treatments normally. Maintained good hemoglobin and platelets levels. Don't discontinue your gym. You will get out of it. 

     

  • Hello all - 

     

    Iv recently been diagnosed eijt this and I was deeply saddened to read all your posts as I'm digging deep to hope I can be a long term survivor (they do exist!) I have a 2 year old abs 10 week old baby so a lot to fight for! I have read someone has this in 1994 abs is still going strong.. so fingers crossed although I'm sad your stories haven't been successful :( 

     

    holly 

  • Hi

    my daughter had glioblastoma multiforme. I so hope and pray that you will be one of the long term survivor of GBM stay strong and safe

    all the best. 

    Mum76

  • Hi Holly, so sad to read your story but so happy to read you're ready to fight it,you are a worrior woman. My mum has a glioblastoma and was diagnosed in June 2020 and told it couldn't be operated on that she had 3 to 6 months left, this came a week after her 80th birthday. She asked for chemo and the tumor has shrunk. She is still fighting,I'm so proud of her she too is a worrior. You are an inspiration to others, take care lovely lady.

    Sending much love

     

     

     

  • Hello,

    My prayers and hope to everybody fighting this dreaded disease. A very close friend of mine got diagnosed with GBM Aug 2020. His tumour could not be operated and has now gone through a round of radiotheraphy and monthly rounds of chemo since Nov 2020. Latest scan shows inflammation and thereby causing headaches, loss of sensation, issues with balance, being sick, some short term memory loss. From the experiences in this group does these symptoms subside with increase in steriods dosage? or is it turning for the worst already?  Have anybody experienced delays with MRI scan in case of inflammation ?

    Thanks & Best Wishes.

  • Hi holly 

    my sister was diagnosed with glioblastoma stage 4 multiforme few weeks ago , devastating like u she has an 8 week

    old baby at home , started radio and chemo together yesterday , we are all trying to be positive and hoping for the best possible outcome 

    sending u strength and prayers

  • Hi

    so very sorry to hear if this but also comforted to know there are others. It's been a tough few months but I'm having. To take it one day at a time. The chemo and radio finished for me a couple weeks ago and ic foubd the afte effects worse than during the treatment so I hope your sister manages to get through the treatment too! It's such a cruel time to be diagnosed with something like this so I am sending love abs positive thoughts. 

    Stay hopeful - there are positive stories of people living for Some timE and wijr our babies hiowfully

    we can be those people! 

    if you want to check in anytime please do! 

    Holly :) x