Dad Diagnosed with Gliobastomas

Sad for Dad · Regular Joined: 20 Jul 2009 Posts: 11

Hello Everyone, my name is Lori and my Dad was diagnosed with a brain tumour call Gliobastomas stage IV on June 12 of this year. A couple of weeks earlier, my family and I noticed that he was forgetting simple things like what he did that day, what he had for dinner.

I asked him one day what was wrong after he was not able to answer any questions and frustrated he told me he was having problems remembering. This was on a Friday. On the following Monday, I managed to get him a doctors appointment in the afternoon. Once there, the doctor thought that maybe he had a stroke or perhaps there was a clot and sent him for a CT scan. On the Thursday afternoon he had a CT scan and then was told prior to leaving the appointment that he was to come back the following morning for another. On the Friday (June 12th) the doctor told my Father that he wished he had better news and let us know that he had a brain tumour. My Father as always had a "joking" look on his face and shrugged his shoulders. That is the day my world crumbled and it also was the 20th year anniversary of the passing of my Mom from cancer.

The following week, we met up with a Neurosergeon who said the tumour was inoperable but said a biopsy had to be done quickly. A week later, my Father was prepped for surgery. After about 2 hours, the surgeon came to the waiting room with more bad news. It was malignant and was about 3cm by 5cm and a stage IV. That is the day my world crumbled even more than it could.

My Father stayed in ICU for two days and remained in the hospital for 5 more. He finally came home. What a great day. Two days later we met with the Oncologist who told my Dad she would only recommend 10 treatments of radiation as the tumour was growing so quickly. This would allow him to get his "affairs" in order and might give him another month to live.

My Father declined radiation on July 4th and since then has rapidly gone down hill. His mobility on his right side has declined and his speech and memory are quickly failing him.

Today he had his first seizure and banged his head. He is currently in the hospital where they will increase his dexamethasone (a steriod) back up to hopefully increase his mobility. After the surgery they started to reduce him from 4 pills a day to 2 and will likely end up moving his dose back up again.

The doctors said he had a couple of months. My heart is breaking. My Dad and I are best friends. I've already lost my Mom and I just can't bear the thought of losing him too. Do I want to accept what is happening, no. Do I have to accept it, yes.

I'm looking for anyone's experience with this. What to expect? How long can I keep him at home?

Any insight would be so helpful. I'm so glad I found this site because I was feeling like I was the only person in the world who has been affected by this.

Thanks,
Lori

Oak · Regular Joined: 30 Mar 2009 Posts: 18

Lori, my dad got a very similar diagnosis in late feburary, early march. GBM IV, and the works. My dad is 70. He decided to do everything he could to push his life expecancy out. The tumor was in a 'good spot' for suergery and so when they did the biopsy they removed a lot. But post chemo and radiation his seizures got progressively worse and in under a week he was in the ICU. He's been unconcious now for 38 days. He had a second surgery to remove the part of his brain causing the seizures.

I feel your pain.

All I can offer is do everything you can to be there with him. There is no set time line of decline that I've found in these things, and believe me I've looked as hard as I could. There's no way to really figure out what functionality will go first and how long you can keep him at home, it'll be a case by case basis I'm afraid, based on his rate of decline and how much can be done for him at home.

I don't know what state you live in, but almost all states have at least a living will. I highly recommend having some tough talks with your dad on what he wants done going forward, if he is still with it enough to have those talks.

The only other helpful advice I can give is treat every day like it might be the last because you never know when something might change. I was lucky and got to spend the last day my dad was awake with him. He wasn't too coherent at the time, but... it may be the last time he says anything to anyone at this point, and I never realized it at the time.

I guess that's all I can say really. If there are any specific questions that people here can answer, maybe we can help? The people here are very helpful.

-Oak

Sad for Dad · Regular Joined: 20 Jul 2009 Posts: 11

Oake, I'm so sorry to hear about your Dad. I hate the "C" word as I'm sure everyone else does especially after losing my Mom to this.

I think that my Dad's inner will to live has given up. Since the passing of my Mom, he has yearned to go and be with her. It is his life objective. My Dad is okay with what is happening to him because he knows he is going to a better place. This does put me just a smidge at ease.

As for Wills, etc, my Father is a planner and has everything done.

I do agree, everyday is a gift. I've always been very close to my Dad - we have such a special relationship which is hard to find these days.

kenobewan · Regular Joined: 10 Jun 2009 Posts: 25

Hi Lori,

I too feel your pain and realize that this is double for having already lost your mum.

Is he being treated at a brain tumor treatment center? If I had the money this is where I would go for my treatment. I am surprized they are not suggesting Avastin or another treatment.

I know that this is not an easy time, but I would want to be aware of all the available options. In my case, I feel that is it important to stay positive and in control.

I wish you all the best in this trying situation.

Sad for Dad · Regular Joined: 20 Jul 2009 Posts: 11

Kenobewan,

He is not being treated. He has decided not to take treatment. I have to accept that. I told him I was okay with that which I think made him feel at ease. Again, I think he wants to go to be with my Mom.

Lori

[quote="kenobewan"]Hi Lori,

I too feel your pain and realize that this is double for having already lost your mum.

Is he being treated at a brain tumor treatment center? If I had the money this is where I would go for my treatment. I am surprized they are not suggesting Avastin or another treatment.

I know that this is not an easy time, but I would want to be aware of all the available options. In my case, I feel that is it important to stay positive and in control.

I wish you all the best in this trying situation.[/quote]

sonia · New User Joined: 30 Mar 2009 Posts: 5

Hi Lori

So sorry to hear you've joined this brave but battered community.. my mom (age 67) was diagnosed with a GBM in Jan 2009... her tumor was also inoperable but she had the radiation & Temodar treatment. After the biopsy she lost complete motion on her right side (arm & leg) and has been bed ridden since January. We have her with us at home, and she is in diapers as she has lost the ability to tell us when she needs to pass motion / urine. It is a sad sad disease but as a daughter, I can live with each day like this. Our prognosis too was 4 - 8 months, and (touch wood) we are into our 7th month and mentally, she still seems ok. Her next MRI is in a few weeks and I guess we'll know more then.

As everyone else says, honestly take one day at a time. I sleep at night thankful for a full day with her, and wake up each morning with a nervous knot in my stomach, not knowing what the day holds.

My mom's vision has also been impacted by the radiation so TV / music / reading are not an option for her... she just enjoys having us (my brother, sis in law, nephew, dad and her sister) take turns to sit in her room while she is awake. We've rented a hospital bed so that she can eat her meals sitting up, but other than that, it's a lousy life for her, someone who was hosting a party for 40 people 2 weeks prior to her diagnosis.

My best wishes to your Dad.. and all the very best.

Sad for Dad · Regular Joined: 20 Jul 2009 Posts: 11

Still waiting on word from the hospital. The doctor wants to have a meeting to talk about care and where we go from here. My Dad is a very proud man and I am not in the mindset yet that he needs to be in the hospital.

I am hoping that they increase his steriod today which I'm praying will bring him some relief.

More to come but thanks for your kind words.

brainman

Lori, I am so sorry about your father's brain cancer. My mother died due to a GBMIV just under 11 years ago now. She was older (79) and in already poor health so she opted not to do any treatment other than the biopsy. She only lived 2 months after the official diagnosis. Although the details of your father's story are different, I can certainly remember how I felt back then and imagine how hard this in on you too. It all sounds so familiar Sad

.

Is your father also receiving any anti-seizure meds? The steroid will decrease the swelling which in turn will help decrease the seizures but he might need to be on anti-seizure meds as well. I have been on them since my diagnosis (1992) and will be on them for the rest of my life. Just something to talk about his your father's neurologist.

It is possible that your father may not need to be hospitalized. Home healthcare and, if appropriate, hospice can provide great assistance to him at home. Hospice will only called if the doctor thinks your father might not live more than 6 months.

You and your father are in my thoughts and prayers.
_________________
Jim
Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
http://cancerforums.net/viewtopic.php?t=2405
My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029
Twitter: @JimHawkins54

Sad for Dad · Regular Joined: 20 Jul 2009 Posts: 11

My Dad passed away yesterday after only a 7 week ordeal with his brain tumour. He is in a better place without any pain or discomfort.

brainman

Oh SFD

, I am so sorry to hear that your father died. My mother also died peacefully and without pain. I guess that is the only good thing about brain cancers (if there can be anything good).

I will be thanking about and praying for you as you put your life together after such a big lose.
_________________
Jim
Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
http://cancerforums.net/viewtopic.php?t=2405
My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029
Twitter: @JimHawkins54

tawny111 · Regular Joined: 04 Jun 2009 Posts: 37 Location: usa

so sorry about your father, i was sad for my dad as well, he sounds like your dad so much!
His age and decisions got us in a mess......he was post stroke 1 year which left him permantly paralyzed (that was bad enough), his parkinsons was advancing quickly and then the surgeons talked him into major brain surgery at the age of just turning 84!!!!!!
"they" told him he'd have an easy operation (GBM 4, 5 cm.), they took out 80 percent, when he came back to the Nursing Home, it was no longer him.....he lasted less than 5 weeks post surgery.....and i suffered greatly with the age factor and major surgery,
the surgeons made it sound like a walk in the park kinda thing, it certainly should have NEVER done this with his disposition.
well, i am sorry for going on and on,
you have my prayers, yes, our dad's are at peace now.
amen
tawny

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