glioblastoma - any experience?

[DizBelle]

So, FIL (age 67) has been diagnosed with a glioblastoma (brain tumor). On July 1 he had a seizure and went to the hospital. During that stay, they didn't find anything but they are saying that effects from the seizure (brain swelling,etc) were obscuring the tumor on the scans. They spotted the tumor on a subsequent scan which was done the week of July 28. After this, they did a biopsy (around Aug 5).

He is just starting treatment today (radiation and chemotherapy). What we would like to know is if this timing is typical or if things have been moving way too slowly.

Seizure on July 1
Subsequent scan week of July 28 (4 weeks later)
Diagnosis on August 1
Start treatment on August 20 (50 days since seizure and 19 days since glioblastoma diagnosis)

Should they have looked harder right after the seizure and should the have started treatment sooner?

 

[DizBelle]

bump...

 

[Mickey Fliers]

Unfortunately, this will most likely not turn out well. My FIL was diagnosed with glioblastoma in May 2000. He did it all. Surgery (several), Chemo, radiation, stem cell replacement...he lost his battle in March 2002. This type of cancer is horribly aggressive (FIL was stage IV at diagnosis) and most patients don't live longer than 2 years.

I certainly hope your FIL is headed down a different path. This will be a tough battle and I will keep you all in my thoughts and prayers.

 

[Pooh's Pixie]

No experience, but isn't that what Ted Kennedy has?

Best wishes to your family at this tough time...

 

[DizBelle]

Unfortunately, this will most likely not turn out well. My FIL was diagnosed with glioblastoma in May 2000. He did it all. Surgery (several), Chemo, radiation, stem cell replacement...he lost his battle in March 2002. This type of cancer is horribly aggressive (FIL was stage IV at diagnosis) and most patients don't live longer than 2 years.

I certainly hope your FIL is headed down a different path. This will be a tough battle and I will keep you all in my thoughts and prayers.

How much time was there between diagnosis and the start of treatment?

Did he have any symptoms that led him to get checked?

 

[aprilgail2]

Unfortunately, this will most likely not turn out well. My FIL was diagnosed with glioblastoma in May 2000. He did it all. Surgery (several), Chemo, radiation, stem cell replacement...he lost his battle in March 2002. This type of cancer is horribly aggressive (FIL was stage IV at diagnosis) and most patients don't live longer than 2 years.
.

My godson had that and it was almost exactly 2 years from diagnosis that he passed away. He died a month after your FIL in 2002.

 

[Deb in IA]

Did your FIL have any more seizures between July 1 and July 28?
Any other symptoms, neurological or otherwise? Any significant change is his health during that time?

If not, there was probably no indication to re-scan him any sooner.

 

[DizBelle]

Did your FIL have any more seizures between July 1 and July 28?
Any other symptoms, neurological or otherwise? Any significant change is his health during that time?

If not, there was probably no indication to re-scan him any sooner.

No other seizures but he was on anti-seizure medication. He is a pretty healthy person and exercises regularly. On the Monday prior to the Tuesday seizure he played 4 sets of tennis. He plays tennis a lot and goes to the gym regularly. There were no symptoms (that I know of) that would have indicated anything was wrong with his health at all.

 

[ckmommy]

My MIL had a glioblastoma. She thought she had a stroke in Jul '03. Went to the ER and they felt the same thing. By Nov. '03 she was not able to speak that well and went for an MRI. The dr.'s that did the MRI admitted her that night and did brain surgery the next day. She had a glioblastoma (grapefruit sized). She had radiation, chemo wafers put on the tumor and another surgery in Aug. '04. She lost her battle in Dec. '04.

Not sure if this helps?? In her case, the first sign of things going wrong was 4 months earlier than the diagnosis and treatment.

 

[DizBelle]

Did your FIL have any more seizures between July 1 and July 28?
Any other symptoms, neurological or otherwise? Any significant change is his health during that time?

If not, there was probably no indication to re-scan him any sooner.

True - but what about the delay between the diagnosis (Aug 1) and the start of treatment (today, Aug 20).

 

[shortbun]

Two member of my family have had it. Both had great treament, radiation and other stuff. Both had lots of quality time with family but passed about two years after diagnosis. Both were given 6 months so we felt blessed. I really got a chance to connect with my aunt before she passed and she got to see my son who was born exactly two months before her death. Focus on the positive. Read Bernie Siegle. Love and positive environments do wonders for the whole family.

 

[mrsltg]

I lost both of my grandmothers to it. I am so sorry for your family and, especially, FIL. My only advice is make good use of time. With my maternal grandmother the family was so fixated on preserving her life because they couldn't bear to loose their mother that they adopted a "life at all costs" mentality and my grandmother suffered, terribly. I don't know the specifics of your FILs case so I don't know what sort of prognosis he's been given or what sugery will do to him. I've seen surgery fail miserably twice but that can be due to the location on the brain. Make sure the family understands what treatment will do side-effect wise before determining the best course of action.

Good luck.

 

[PoohsFriend1]

My 30 year old sister is a 6 year glioblastoma multiforme (grade 4) survivor! She still has issues with siezures to this day and you should see her pill box. She was diagnosed with a tumor-in early July 2002 and because of scheduling conflicts with drs, and other vips that needed to "attend" the surgery, nothing was done for at least 3 weeks- she ended up being admitted after something in her head ruptured, and had emergency surgery 2 days later. She went through radiation & chemo after the surgery. The doctors said 2 yrs was the average lifespan, so we feel really blessed that she is still here. They also have implied it will come back, its just a matter of time. We like to think they are wrong in this case.


Prayers for you and your family.

 

[Mickey Fliers]

How much time was there between diagnosis and the start of treatment?

Did he have any symptoms that led him to get checked?

You know, I don't quite remember the time frame from diagnosis to the start of treatment. My FIL had just turned 49 when he was diagnosed. He was otherwise very healthy. Excercised, didn't smoke, rarely drank, etc. His symptoms started as headaches, dizzy spells and blurred vision. When they first found the tumor, it was golf ball sized. He went through 3 surgeries over the course of the 2 years. The last treatment he had was the stem cell replacement in Dec. 2001. At the end, the docs said we could continue with experimental treatment, but the end result was always the same.

We knew from diagnosis that this is a cancer that kills. Few patients survive 3 years and barely a handful survive 5 years. From www.news-medical.net - "Of the approximately 12,000 people who are diagnosed with GBM annually in the U.S., half will die within a year, and the rest within 3 years. Currently, the only treatments that stretch survival limits are exceptionally invasive surgeries to remove the tumor and radiation treatment with the maximum tolerated dose - all of which leads to a painfully low quality of life."

My heart goes out to your entire family. As the DIL, I was able to see all of this from a more practical, logical point of view. My DH and MIL always held out hope. You certainly need to keep the faith and I will continue to pray for a breakthrough on this horrible disease.

 

[Deb in IA]

True - but what about the delay between the diagnosis (Aug 1) and the start of treatment (today, Aug 20).

I'm really sorry to tell you this, but if the treatments are radiation and chemotherapy, they mainly being done to reduce symptoms and prolong his time. Palliative care.

They will not cure him.

And since it is palliative, I doubt the 19 days makes much difference in the ultimate outcome.


I'm very sorry.

 

[Mickey Fliers]

My 30 year old sister is a 6 year glioblastoma multiforme (grade 4) survivor! She still has issues with siezures to this day and you should see her pill box. She was diagnosed with a tumor-in early July 2002 and because of scheduling conflicts with drs, and other vips that needed to "attend" the surgery, nothing was done for at least 3 weeks- she ended up being admitted after something in her head ruptured, and had emergency surgery 2 days later. She went through radiation & chemo after the surgery. The doctors said 2 yrs was the average lifespan, so we feel really blessed that she is still here. They also have implied it will come back, its just a matter of time. We like to think they are wrong in this case.


Prayers for you and your family.

That is wonderful!

 

[Green Tea]

try to Get him into Duke's experimental vaccine protacol