Glioblastoma Multiforme grade 4 inoperable

Hello,

My grandfather is 65 years old and was recently diagnosed with GBM.  At this point Doc tells us that giving him radiation treatment can increase edema by 20%.  Family is in limbo with decision making as far as chemo/radiation?

My sister's GBM was debulked Dec. 2007 and she began radiation and a chemo pill five days a month. She had a decent quality of life for about a year when it returned. When it did, she did IV chemo and that was rough. When they couldn't give her anymore treatments, the cancer became extremely aggressive. She's paralyzed on one side of her body now and sleeps around 20 hours a day. She does not seem to be in pain except when we try to get her up and that's our pulling on her, etc. that hurts.

You say your family is in limbo and I can certainly understand that. Is your grandfather able to speak? If so, has anyone asked him what he wants to do?

I've heard of some elderly patients requesting no treatment other than for comfort.Others your grandfather's age have fought a good fight.

Since your grandfather's tumor is inoperable, I'd say that changes the situation quite a bit for you in comparison to what my sister dealt with. 

I expect that his doctor told you radiation and chemo would buy him some time. You might want to ask about the quality of that time versus the length. This is a huge decision you're all having to deal with. 

God bless.

Hi, and I'm very sorry to hear about your grandfather. But wait a sec, 65 is NOT OLD!!! Just had to say that. OK, now, temodar and radiation for about 6 weeks is the standard treatment, whether or not surgery was possible. Both of them cause some edema (swelling), but that can be managed by steroids. My son's tumor was so large to start with , and they were only able to remove a third of it, that we were concerned about edema and pressure which would potentially cause uncal herniation (at the brain/spinal cord connection) but it was managed by the Decadron and not a problem. Of course once those six weeks are over, it's a good idea to very slowly taper OFF the Decadron because it has its side-effects too, like muscle weakness.

I wonder in cases like your grandfather's if maybe Temodar and Avastin, or Carboplatin and Avastin would be the best first go. Avastin reduces swelling and can actually shrink them too. See if his doctor would consider this. (Whoever is going to the appointments with him should read up on all this stuff!)

I wish your family lots of time together.

Sarah

mother of Andy 27 dx gbm/pnet 1/09

Find another  cancer center. Fast!  You can get recommendations here based on where your GF lives.

Larry

My husband was diagnosed on 5/09 with inoperable GBM IV.  His NO is at Sloan Kettering in NYC.  He has undergone the 33 days of chemo and radiation and now is on Temador 5/23 day cycle.  He just had his 5 month MRI at Sloan and everything was stable with no new growth.  Your grandfather is only a few years older so don't give up.  Not that I am saying there are not bad days, but we have enjoyed a vacation and he has gotten back out on the golf course a few times during the last month, he may even try skiing in a few months (bought the helmet last week).  So life can still go on.

I've decided that this disease is not a death sentence but a change in life style.  We have learned to rest during the chemo treatments and then enjoy the rest of the month. 

One last thing, coming to this message board has been wonderful.  I read every post faithfully everyday.  It helps to know there are others out there dealing with the same problems and concerns that I have.

Thank you, everyone.

Wife GBM IV dx 05/09

My dad had a tumor they could not operate on and at age 69 but strong as a bull and despite a stomach anuerysm that also required surgery, went through the full course of radiation and chemo and then 5 of the 6 cycles of follow up chemo.   

He was tired but the decadron managed almost all of his physical symptoms and he did not have any cognitive problems.    Even with the treatment, they thought he would get six months and we are still here at 13.5 months now.   

Having said that, there are times I wonder if all of that was for our selfish reasons of wanting to make sure a really good bye was said and for a miracle cure so I do appreciate why no treatment could be a completely legitimate option.   

I agree with everyone -- 65 is not old. Isn't 60 the new 40 and 50 the new 30? I sure hope so since I will be 50 this week!

Research the top brain tumor centers in the country -- MD Anderson, Cleveland Clinic and Duke's Preston Robert Tisch Brain Tumor Center. My husband receives treatment at Duke -- convenient to us and fabulous.  There are many out there that will want to help your grandfather. You cannot give up hope nor can he.

Amen -- GBM does not = death sentence. Just a new normal.

Best of luck. You are all in my prayers.

Holly

Husband dx 2/09

On 10/14/2009 luckywife wrote:

I agree with everyone -- 65 is not old. Isn't 60 the new 40 and 50 the new 30? I sure hope so since I will be 50 this week!

Research the top brain tumor centers in the country -- MD Anderson, Cleveland Clinic and Duke's Preston Robert Tisch Brain Tumor Center. My husband receives treatment at Duke -- convenient to us and fabulous.  There are many out there that will want to help your grandfather. You cannot give up hope nor can he.

Amen -- GBM does not = death sentence. Just a new normal.

Best of luck. You are all in my prayers.

Holly

Husband dx 2/09

Oh, I didn't mean that the three I listed are the only best ones out there just the top ones I can think of. I am sure more suggestions will be forthcoming from others on this site.