• My dad was recently diagnosed with GBM, grade IV. I'm looking for hope, support and help about this terrible disease.

    Asked by BKWG217 on Sunday, January 8, 2012

    My dad was recently diagnosed with GBM, grade IV. I'm looking for hope, support and help about this terrible disease.

    6 Answers from the Community

    6 answers
    • GregP_WN's Avatar

      I'm sorry for your dad having this disease. I do not have that type of cancer but I'm sure someone here will be chiming in. We wish you the best in this. Good luck to both of you!

      almost 5 years ago
    • Rainbowkdm's Avatar

      My husband was diagnosed with GBM on Sept. 23, 2010. He had slowly been losing use of his left side of his body. We thought it was a pinched nerve because he liked to lift weights.
      After craniotomy to remove most of the tumor, he went through 6 weeks of radiation and oral chemo, Temodar. After that was complete, he did Temodar for 5 days every 4 weeks. He continued this until October of this year until we found his tumor was growing back in one of his follow up MRI's. He got a port put in and started Avastin and Irinotekin on Nov. 7, 2011. He is on 2500 mg of Kepra daily to keep his seizures under control. He is alert, stays at home with assist from his mother who helps me care for him. Is able to get around the house without too much difficulty but tires very quickly. Because of his inability to use his left arm (his dominant arm), he does need assist with ADL's and food prep. Has been getting a little forgetful but not dangerously. That's just a brief history.
      What I have now is to say that our story is a story of hope. He should have been dead in 2010. We have been so fortunate to be together for more than a year now and we cherish every moment. I have done a lot of reading on GBM...there is not much hope to grasp for. Just taking advantage of every moment that you have. It's not fair, it's not nice, it's not pretty. Being a nurse and his caregiver, I know too much about what we are moving towards. I'm exhausted because I want everything he does to go well so I make sure what I can control, does go well. Every moment is a blessing.
      I have noticed from reading many people's stories, none of us have the same one. It all works in different ways. I think that's what makes it so hard to treat, too, is that it forms in different ways. Just keep your dad looking forward to another day, then another, then another. That's all you can do. And help out as much as you can...unless you are his main caregiver...because in that case you need to ask for help as much as you can. It is a heavy load.
      Good luck to you and your family. I hate you have to go through this. It is a horrible disease.

      almost 5 years ago
    • jbrw's Avatar

      My brother has the same diagnosis as your dad; he was diagnosed in early September. The tumor is on the left side of the brain, so it is affecting speech, memory, general thinking and decision making, and he has weakness on his right side caused by the tumor, so his leg gives out occasionally. He had surgery, and went through 6 weeks of radiation/chemo, with few side effects. He had a bad couple of days early on, but after that it was mostly fatigue. The MRI afterward showed no shrinkage, but no growth, so he decided to do at least 2 rounds of Temodar oral chemo. The first round was awful - nausea, vomiting, weakness, etc -- but after about 10 days he bounced back and was doing better than he had been. The second round had minimal effects - mostly fatigue and a couple of days of pretty much sleeping in between getting up to eat. We are now waiting until he can have another MRI to see where we go from here. The impact of the tumor on your dad will at least in part depend on where the tumor is, and what physical/mental functioning is affected, if any. My brother's speech and right side weakness have continued to deteriorate over the past four months, and he can now go out only in a wheelchair, and his speech is increasingly difficult to understand. He knows the words, just can't get them out. He gets very frustrated with it all, as you might expect. His quality of life has shrunk tremendously, yet still enjoys going out to eat with friends. As others have said, each case is different, and progress is so individual and unpredictable, that the dr's can only tell you what might happen, and what they think is happening. We go by his behavior, and what we see and hear. I've heard of people who have had months, if not years, of good living with the disease; then there are those for whom it moves very quickly. You just have to wait and watch, and be there. It is a very difficult time for you and your family, and it will be for some time. Try to enjoy the good days, and get through the bad days. You must take care of yourself, including taking time out, getting help taking care of your dad, and keeping yourself healthy physically and emotionally. When people offer help, say YES! And give them a chore -- most people want to help, they just don't know how. If you have more specific questions as time goes on, please don't hesitate to reach out to me. Blessings to you and your dad.

      almost 5 years ago
    • Cazbah's Avatar

      Ben A Williams is a GBM survivor of 16 years and has written a book about his experience and the medical establishment. It is very interesting. I downloaded it on my Kindle for $9.99. I do not have GBM - I have grade 3 Oligodendroglioma, but am considered terminal, too.
      He used a cocktail approach that he concocted himself by doing alot of research.
      Anyway, I recommend his book to all GBM patients and their families as well as other types of BT patients (like me) who are considered terminal.
      Do as much research as you can. Knowledge is power.
      The title of his book is Surviving Terminal Cancer: Clinical Trials, Drug Coctails, and ...

      Good luck everybody. Fight the good fight.

      over 4 years ago
    • Cazbah's Avatar

      I forgot to add that he also used alot of thestandard cancer medicines we are all using- chemo and radiation, but also supplemented. It is worth a read.

      over 4 years ago
    • Zacksdad's Avatar

      I was diagnosed with a grade IV GBM tumor on my right frontal lobe in June 2010. Luckily for my family, my parents and sister were able to travel to our home for my surgery at Moses Cone at Greensboro. My opinion is the tumor is like real estate it is all about location,location location if his surgeon can get a good amount of the tumor out the better your father can do in post surgical treatment. I was given a year and the longer I lived the more I spread my story of survivorship. I am no one special I just have alot of people praying for me every day and I pray too which I feel helps me cope every day. Even with all this help it is not a dance in the pansies. I look at it this way if I am breathing I am fighting which I am very good at. I can still get my wife to laugh (NEVER GIVE UP NEVER SURRENDER) That is from a movie called Galaxy Quest and it is funny as XXX.If you get chance give it a try.

      about 4 years ago

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