Father Update -

Oak · Regular Joined: 30 Mar 2009 Posts: 18

Well, so here is the summary - My father was diagnosed with a GBM IV in Febuary after a biopsy.

As the Chemo and radiation treatments progressed (Done to try to buy a longer quality of life, with the understanding that it was likely only buying a bit more time and that GBM IVs in a 70 year old man are terminal) seizures started to occur with greater frequency.

A few weeks after the radiation treatment ended the seizures were so bad that he was hospitalized as they tried to control them. He ended up unconscious, and still seizing as they gave him phenobarbitol, among other anti-seizure meds. By the time he maxed out on five different anti-seizure meds it was clear that the medicines weren't going to stop this. After about 4 weeks unconcious and seizing the doctors suggested another brain surgery to remove the part of the brain causing the seizures.

There wasn't much choice, so the surgery went ahead. The seizures have stopped. But two things post surgery. The first is that they did another biopsy at the tumor site while they were in there. They found vascular infiltration of the GBM IV, which was explained to me as 'the tumor is growing' Unfortunately he is too weak to take any chemo until he's awake. That brings us to problem two.

He's still out cold. The doctors say that it will take him at lesat a few more weeks to reagain base line awareness and he won't really be 'with it' for probably one to two months after he 'wakes' because of the surgery and seizures and all. They won't treat with chemo until he's strong enough as they say right now if they tried it the chemo would kill him.

He's been out cold for almost 40 days. The longer he is out cold the less likely he will regain 'meaningful' conciousness. The tumor is regrowing and we can't do anything to even slow it until he regains his strength.

This is a rough spot. The only saving grace is that he is still out cold so not suffering in any real way. Although those around him are....

By the time they can do any more treatments I worry that it will be far too late to really stop anything. The odds of him having a real ability of even talking with us shrinks the longer it takes him to wake up. Most days are status-quo now, as we just wait to see if he even will wake up.

We played the odds at every turn, took the best statistically based chances, tried to get the longest life we could with the best quality. But so far we have not been lucky.

For those who read this, and are dealing with GBM IVs I still think we made the right choice on chemo and radiation, but it is a risk. We were unlucky.

kenobewan · Regular Joined: 10 Jun 2009 Posts: 25

Hi Oak,

I feel your pain. Don't get me started on how they treat older people in many hospitals Mad

. I was one of the younger people on a rehab ward for 5 weeks. Who are they to say that a older person's life has any less value?

This is a tragic situation. It is such a shame that his seizures escalated out of control and that drastic measures had to be taken Sad

.

I hope that you talk to him and are able to make him feel loved. While the chances are not great a positive environment is the only way to effect a positive change in his cognitive status. People have come through worse, if it was my family I would not want them to give up hope.

I wish to thank you for sharing your Dad's story. It can't have been easy. We all need to remember that there are serious risks involved. I hope he does wake up, even if it is to say goodbye. Unfortunately there are still not enough options for treatment available. It is my hope that in the future (hopefully sooner rather than later), brain cancer will be stablized like many other chronic diseases.

My best wishes to you and the whole family.

brainman · Posted: Wed Jul 22, 2009 3:16 pm Post subject: Re: Father Update -

[quote]This is a rough spot. The only saving grace is that he is still out cold so not suffering in any real way. Although those around him are.... [/quote]

Oak, often this is sooo true. Even when a person is not totally unconscious as your father is, it is often those around the sick person who suffer the most. Having been on both sides, I can say that I would much rather be the patient.

Thanks for the update.
_________________
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
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