Glioblastoma --My Fathers Battle

OK....my father was diagnosed 4/20/2007 with GBM IV Left temporal lobe.  He was operated on with nearly a 100% perfection rate.  He did radiation and temodar.  This past August my father had his last Temodar treatment.  It was time for him to start the next round of Chemo and he had just started feeling better and did not want to take it and go back to feeling ill again.

Please bare with me and hear me out......

When my father got sick (he is 65) he made me (an only child and primary caregiver) promise to never just allow him to "exist".  That is just not him.  Once my father became ill his life went down the tube.  The amount of doctors that he had to see on a weekly bases was unbelievable!  You need a doctor for this and a doctor for that and each doctor was just writting out prescriptions for this that and the other thing and it got to the point that he literally almost DIED!  I found him laying on the side of his driveway one morning and thought that he was dead.  It turned out that his General Doctor gave him 2 prescriptions that interacted with a drug that another doctor gave him and it depleted his sodium level.  We knew that something was wrong and took him to another Dr. for bloodwork but no one ever checked his Sodium level, which for anyone who knows about sodium levels his was at 114 when he was rushed to the E.R. and spent 4 days in ICU.

So anyway.  We spent an entire summer at every doctor for every test and my father had had enough.  He went for his final MRI in September which came back No Change.

That was the last time that my father has been to a Dr.  We went out to Dinner together, to a very nice restaurant this past Friday evening.  He is better today than he was this entire past summer.  He is however on 2mg's of Decadron daily.  He became very ill in the end of Nov. and into December.  We had some left over and 2 refills left of it.  He refused to go to a Dr. (nobody tells my father what to do--nicest man you would ever want to meet, but at the same time he is who he is).  So we gave him the smallest amount of Decadron (1mg). 

That 1mg of Decadron turned my father right around he has been on it ever since and is doing sooooo well.  He still refuses to go to a doctor.  The doctors are either "all or nothing".  They just can't see you without this test and that test and this doctor and that.  I do not blame my father for one minute for not wanting to live out his days in peace!

I do notice however that he is slowing down a bit, and that his left shoulder is weakening.  But he is really doing so much better than what the doctors suggested, and as I said, so much better than he was just this summer.

My reason for writting is....what can I expect from here?  Has anyone had a similar circumstance?  I know that this is not the norm...but we can't be the only ones refusing treatment.  Please be honest and give me some insight.

Thank you for your time reading this long....long...message.

~Joann

*I did not proof read this because I would have changed half of what I wrote!

Joann, after my father's first surgery (12/06), he did the initial rounds of radiation and chemo and started the follow-up chemo with Temodar. But it made him so ill that he didn't want to continue, so he stopped taking Temodar.

He felt reasonably well for about 6 months, when seizures began, followed by recurrence of the tumor growth. He agreed to go back on Temodar then, but it didn't help. Tumor continued growing rapidly and he had another surgery in March. He says that's it, no more intervention, but he's still on anti-seizure medication and a couple of other meds also. 

Similar situation, I think--he definitely does not want heroic interventions if they will make what remains of his life miserable. But it is very difficult to partake of just a *little* of modern medical care. Anything he agrees to do seems to be a slippery slope toward more and more attempts at treatment, intervention, medication, procedures, etc. 

I'm so sorry that you and your dad are going through this. My dad is about the same age as yours, too; he's 67 and like yours had never been sick before this came along. Good luck to both of you.

It's amazing how sometimes I read these posts for weeks and find very little I can relate to, then out of the blue I am compelled to respond to multiple posts...

 My mother was diagnosed w/ GBM in Oct '06. She was then 67. I just wrote the synopsis of her journey in a thread something like "Right (brain) Tumor.. No Problem", so I won't bore you by repeating it. She too was tired of the trips to the doctors, MRI's bloodwork, waiting for the pharmacy to get the rest of the Temodar in stock and sleeping all the time. She's been off chemo for 10 months. It's not that she's regained anything that has been lost, but there is more peace and stability in her life (and she sleeps very little other than night time). The anticipation of MRI's and gut wrenching waiting for results is gone. She weaned herself off Decadron and Dilantin (under Hospice's oversight). Just takes one Tylenol as needed. We've settled in for whatever the future brings. Yes, she sought a referral to Hospice when she decided to stop treatment and was given a poor prognosis, but this has been a most pleasant surprise! Mom is visited by a nurse weekly,  social worker and chaplain at least monthly and we've even started to use respite support so our family can continue to live in the big wide world for which the acronym GBM means very little...

Hi, I finally surfed long enough to get to this forum of fellow GBM1V experts in training.  We certainly learn more than we ever wanted to know.

My Dad was dx'd in Dec 2007.  He is 73 years old.  He had a partial resection of 90% approx.  He recuperated from surgery very nicely and even went thru 6 weeks of radiation and temador with minimal side affects.  He is now on 5/23 for April and May and will be MRI'd again at that point.  We felt we had a reason to celebrate after his mri at the completion of treatment indicated things stayed the same or possibly shrunk a bit.  However, since that celebratory day, things seem to have gone down hill.  I realize the 5 days of temador in April was a much larger dose but I cannot attribute his current symptoms to that necessarily. 

Besides the personality changes we have seen from pre surgery to post surgery.  Which is difficult to deal with on its own.....all of a sudden my Dad has no interest in anything.  He is exhausted.....does not know what day it is or what time it is. Has no appetite whatsoever and refuses to keep hydrated????  Has no desire to eat or drink. 

Understand this was a very independent man who still worked full time up until his surgery on 1/3/08.  Very into his computer, quicken programs etc. but has no concentration for it now.  Golf lover no longer. 

He has been weaned off of the steroids and anti seizure (never did have a seizure) for at least 3 weeks. Last radiation was 3/5/08?? We are scared. The Drs do not tell you what to expect --is this something he can bounce back from toward some quality of life?  Sorry this is so long. I hope someone can share insight.  I dont even know what dr to discuss this with. Surgeon? no  Oncologist? Maybe but he is very technical -

Help?