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Dad has glioblastoma stage 4

bjoh249
Posts: 1
Joined: Jun 2017
My dad is 66 and was recently diagnosed with glioblastoma stage 4. They were able to remove his tumor but they say it grows back aggressively and quickly. He is in rehab right now and we hope he will be back home within the week before he begins chemo. We are hoping for a year left with him. No doctor has given him a set time to live but my mom tells me that no one has survived this disease and his age will mean he won't have very much time with me. I am trying to do my part as a son to help. The doctor we talked to at the clinic where he will be having his chemo said there were no clinical trials for him because of where the cancer was located and the fact that there were two of them side by side. If anyone can give me any information that might help him beat the odds that would be great. Any new treatments, anything. I could also use some inspirational survivor stores from people his age who may have beaten the disease, or lived longer than a year and was able to get back to normal in the mean time. The brain cancer site for people in his category and age range were mostly a bunch of downers from the children of parents who died quickly from the disease with a couple of inspirational stories thrown in. The sad stories on the site were mostly from the 2010-2012 year range so maybe something new has come along since then for this disease and people his age.
lthenderson
Posts: 19
Joined: Feb 2017

Books have been a great way to help me process the battle with cancer. They have provided much insight on what to expect and how to make the most of the time we have left. Some are even tales of survival. I have read probably a dozen of them in the last couple years. Off the top of my head, some of the better ones are listed below. The one entitled Pear Shaped is a survival story of stage 4 Glioblastoma.

 

So Far, So Good: A Memoir of a Brain Tumor Patient and His Caregiver by Kathy Beechem

Chasing Daylight: How My Forthcoming Death Transformed My Life by Eugene & Corinne O'Kelly

Being Mortal: Medicine and What Matters in the End by Atul Gawande (I highly recommend this one the most.)

Pear Shaped by Adam Blain

danieldavid
Posts: 3
Joined: Jun 2017

The Brain That Changes Itself - Norman Doidge, MD

danieldavid
Posts: 3
Joined: Jun 2017

The Brain That Changes Itself - Norman Doidge, MD

danieldavid
Posts: 3
Joined: Jun 2017

Since being diagnosed with inoperable glio 4 last fall I too fell into a depression.  three things to help:

1.  A loving, caring support group - friends, family, church  members, etc. MOST IMPORTANT!!!

2.  A relatively new (5 years) treatment called OPTUNE: Novocure is the company that makes it .  It is basically a cap that goes on your head supplying low-level electrical stimulus which attacks only the cancer and allows the chemo to work better.  Your oncologist should be able to refer you.

3.  "The Brain That Changes Itself"- this book literally saved my life by showing me that the brain can learn to heal itself, over time.  I have regained some function in mobility from a basically "dead" right side of my body.  Highly recommended.

I also found that it helps to keep the brain as active as possible so I am blogging on CaringBridge/Daniel website, resumed practicing piano, and FORCE myself to do my PT/OT exercises.  

If you respond to my CaringBridge posts, that will put you in touch with me.

GOOD LUCK!

 

 

 

 

 

 

 

clgoelzer
Posts: 6
Joined: Jul 2017

My husband battled his GMB IV for 14 months before it beat him. He unfortunately had numerous complications which were unexpected. He ended up having a stroke after his craniotomy so that was a big set-back. He did end up getting some quality of life back for about 12 months but the confusion never left him and he needed continual assistance with most things. From our research, I can tell you immunotherapy is more widely available now and if possible can you take him to a brain tumor center? They know a lot more about what can be done and what's available. I did learn that not all experts can know everything and that they differ in how they'd approach a specific case. I have heard about survivor stories, though they are rare. You have to hope your dad can be one of those!

All the best to you all,

Cathy

Joann73
Posts: 2
Joined: Sep 2017

My mom was diagnosed in march 2016. She had the surgery, followed by radiation and chemo.  Then followed with maintenance chemo for 1year. She has gone through these 18 months fairly strong and healthy and able to live a normal life.  She just had an MRI a couple weeks ago and there is growth. We don't know what will happen in the upcoming months.  You may still have some time, we had 18 months I didn't think we would have.  My mom and I made sure we got all her affairs in order way a head if time, before things got to bad. Make the best of every day! Thinking of you.  

Solelis
Posts: 1
Joined: Sep 2017

I recently met an old men (74 years old). He had a glioblastoma 7 (!!!) years ago and he is in remission. He had a surgery (big scar on his bold head)

It is very encouraging. 

 

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