Growth rate of GBM

Tom · New User Joined: 13 Nov 2006 Posts: 2

I have been told that a GBM doubles in size every two weeks. Is this true? Has anyone else heard this? If not, does anyone know - on average - how fast GBM grows? Thanks!

Sammict · Posted: Thu Nov 16, 2006 3:55 am Post subject: Re: Growth rate of GBM

Hi Tom,

Not sure where you heard this, but the one thing that is certain about GBM, is that there are no certainties.

My Dad was diagnosed with a grade IV GBM at the end of June this year. He had surgery and went through 6 weeks of treatment a month later. 4 weeks following his treatment a MRI scan revealed that the tumour had tripled in size. My dad passed away on October 27th.

It all depends on what grade tumour it is, where it's located and what effect treatment/surgery has. The biggest problem with GBM is all of the unknowns. They don't know what causes it, why some people get it and others don't. What they do know is that it is very aggressive. Prognosis is dependant on date of diagnosis. They think that my Dad's tumour had been growing for 6 months before it was discovered. Some people can live upto 2 yrs, others like my Dad don't make it past 3 or 4 months.

It is a hideous illness, and I'm sorry that you are here on this forum as I gather either yourself or someone dear to you is going through it.

If you need to talk there are lots of lovely people here that will support you.

Wishing you all the best
Sam

Tom · New User Joined: 13 Nov 2006 Posts: 2

Thanks for your reply Sam.

My son had a seizure the night of August 26, 2004 that landed him in the ER. For the next 2 months it was in and out of hospitals with a somewhat questionable diagnosis of herpes encephalitis. The infectious disease docs never believed he had herpes encephalitis because he was not "sick enough" - yet he did seem to be responding to the Acyclovir treatment, so the neurologists seemed to "go along with it." Each of about 10 MRIs over the course of those 2 months resulted in the radiologists saying that the left temporal lobe 'hot spot' - was either herpes encephalitis or possible infiltrating glioma. All the tests for h. encephalitis came back negative. Although there was always the talk of the possibility of cancer - none of the neurosurgeons would agree to do a biopsy. In fact, 2 different neurosurgeons at 2 different hospitals assured me my son did not have cancer. Was I relieved!!!

In early November of 2004, a neurosurgeon finally felt a biopsy was warranted - which resulted in the removal of my son's entire left temporal lobe, a diagnosis of GBM IV, and word that there was no hope. He died 3 months later at the age of 13.

So... a little more than 18 months later I am finally at a place where I am able to "take in" the ride we have been on and can't help but wonder if the outcome would have been different in any way if someone had agreed to do a biopsy in last August instead of waiting 2 months.

I know that GBM is very aggressive - and altho I know I can't bring my son back - I am still wondering if the docs had been more agressive if the outcome would heva been different.

Would appreciate hearing anyone's thoughts.

Sammict · Posted: Thu Nov 16, 2006 9:22 pm Post subject: Re: Growth rate of GBM

Tom,

I am so sorry, that is so so sad. It's hard enough when an adult dies from GBM, but a young boy, it's just terrible and I am devastated for you.

As we all know GBM is fatal. As mentioned prognosis varies in everyone and is dependant on treatment, so I can't answer whether your son would've survived longer if they had correctly diagnosed and given treatment. But the fact that you were never given that option really angers me and I'm sure you have a lot of anger about this, I can only begin to imagine. Have you questioned them about this??? I would want some answers if it were me, I just can't believe that in this day and age they couldn't get the correct diagnosis!

Tom if you ever need to talk, please just shout. How is the rest of your family coping?

With best wishes and sending you lots of positive energy.
Sam

jackiekeefe · Regular Joined: 26 Oct 2006 Posts: 17

Tom, I am so very sorry to hear about the loss of your son. As you have heard it is a awful disease and my thoughts and prayers are with you.

My father was just dx in september with GBM and has had a partial ressection and is now undergoing radiation and chemo. My father's treament has been very aggressive instead of your standard radiation of 6 weeks they are trying 4 weeks of radiation 5x weekly, with 3 sessions of cyberknife and chemo orally. My father also has another type of cancer in the bile duct and liver which they havent been able to treat because brain needed to be treated first. We have just received an updated MRI which shows regrowth of ressection just in under three weeks and a new growth in frontal lobe which they think could have spread from liver or bile duct it is all very devasting and hard to deal with in just a short time he has been admitted to the hosptial due to elevated blood sugar which is caused from the Decodran. Sometimes i feel there is so much a person can take in this world before giving up. I hope all is well with everyone and i am grateful to have this forum.

Jackie

LoriG · New User Joined: 25 Nov 2006 Posts: 2

Hi Tom

It is true, GBM does grow back within 2 weeks. In my father's case it did. He had his tumour surgically removed about 2 months ago, he is just finishing his last 2 weeks of radiation and his MRI from yesterday has shown that the tumour is back and much bigger. And it is inoperable. Very sad and cruel way to die. I am very devastated. He is only 54 and wants to live, and this thing has destroyed his very last days. He is weak and can barely walk.

[quote="Tom"]I have been told that a GBM doubles in size every two weeks. Is this true? Has anyone else heard this? If not, does anyone know - on average - how fast GBM grows? Thanks![/quote]
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Lori

michelesmith · Experienced user Joined: 28 Oct 2005 Posts: 72

Tom,
I am so sorry to hear about your son. I know it is hard, and feeling like you may have been able to do something makes it even harder. Most of us are either going through it now or went through it recently. For us that have loved ones that have gone on, I think the concensus is that the hope is very little. My dad passed at 56 (formerly completely healthy and strong) and the battle with treatment was only 4 months and they were not very good ones at that. As hard as it is, you can be assured that even if it were diagnosed at the onset, the result probably would not have been much different. My prayers are with you and your family.

Michele
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Michele

michelesmith · Experienced user Joined: 28 Oct 2005 Posts: 72

Lauri,
I am sorry to hear about your dad. We are all hear to help you. The days ahead are not going to be easy. Know that you can always come here and we will help to support you through this time.

My prayers are with you and your family.
Michele
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Michele

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