Treatment After Gbmiv Regrowth

Hey Everyone, I just wanted to post the most recent treatment plan for my father. I'd like opinions.

Here's a summary.
Dad, Age 50, Dx July 15th GBMIV Left Temporal Lobe
Surgery July 19th- complete ressection- No deficits
6 weeks of radiation with concurrant Temodol
Followed by 7 months of 21/7 Temodol
3 clear MRI''s
Most recent MRI, on April 14th shows a 1.4 cm regrowth
Radiation is not an option again
Father would like to hold off on having a second surgery. He would like to see if his growth can be controlled with Chemo.

The oncologists here in Canada have decided to keep him on the Temozolimide. However, they have stopped the 21/7 regimen and put him on the 5/23 regimen . He was currently on 210mg/day for 21 days a month and now he is on 400mg/day for 5 days a month. They are hoping to stabilize the tumor, if not shrink it.
I'm concerned.
I have read that trying to control these tumors with soley temodol is ludicrous... so I questioned the doctor's decision and they told me that from what information is available to date, Temodol is the best line of defense for GBM IV... They said that if they were to give him temodol AND another chemo in combination with it, they would be unable to give him as much temodol as they would like.
They said that they would like to give him 2 rounds of 5/23 and then do another MRI to see how the tumor looks and then go from there.

I know there is no "cure".... I just find it strange how different we are all being treated.

And its also scarey because I know how fast these tumors can grow...seems scarey to keep him on the same medication he was on when it regrew...

Any advise? He is currently on day 2, of his first round of 5/23

Thanks for your time.
Kara

On 5/1/2008 Kara-DadsCheerleader wrote:

I know... and I am so frustrated right now.
2 months seems like a long time to me.
But, dad is sooo hopeful
Problem is, he's been having these little mini seizures since the regrowth... and god, I just hate all of this.
Dad wants to do what the docs say...
I want to respect his wishes...
Frig, Dad just had another little seizure. I hate this.

What about Avastin? I agree they should be moving on to plan B.

You might try going to Duke University web site they have a brain tumor center. Dr. Friedman is very aggresive with treatment. On the Brain Tumor Site you can fill out a form and email to him and he gets back to you with in a few days with his opinion. You can also send your fathers medical records to him and he will review them as a second opinion. I don't know if this is possible since your in Canada bt it's worth a try.

Don't give up. Your being a great advocate for your father.

Kara, I have to agree with mbg.  Once a chemo stops working,  (or in our case - never started working!)  they must use try something else.

In my husband's case - dx 4/07/07 with inoperable GBM IV, left temporal / left parietal lobe - the radiation and temodar did not work at all and he had progression while on this treatment.  Therefore, the plan to go to the higher dose of temodar was thrown out the window and he was immediately put on Avastin and CPT-11.  He's been on that combo every other week since July 25, 2007 with one good MRI after another. 

I think you have said since you are in Canada, you can't get this combination?   I have no advice though on how you can get your doctors to approve this treatment.....

Warm wishes,

Barb

Agree with Barb's post and also there is another possible option with a braind vaccine. 

Have you tried checking www.virtualtrials.com

My husband was diagnosed with a GBMIV in May 2002 after some really bizarre symptoms.  He had been to several doctors and all told him it was stress.  I got tired of it all and went with him to the Dr.  By then he had siginificant weakness on the left side and trouble with coordination and extreme fatigue.

 The tumour they found was 7cm and a resection was done within 5 days of the CT scan that found the mass.  By June he had started radiation 5 days per week for 6 weeks.  That held off the tumour until February 2005 when the MRI showed regrowth.

 They tried higher dose of temodal for 5 days per month for two months (375 mg) but that did not stop the tumour progression, so they switched to 100 mg 21 days on, 7 days off.  They kept that up for 22 months.  Each MRI showed slight progression.

 The MRI in November 2007 showed more progression so they stopped the temodal all together.  In December 2007 they tried high dose targeted radiation - 5 treatments.  That seemed to slow it down.

His next two MRIs were good.  Now he is due for another MRI (in June).  He has had a grand mal seizure at least once a month since Dec.  All with trips to ER because he lost consciousness.  They never know what to do because he has been on Dilantin (usually 400mg per day) for the last 5 years (seizures post op, etc.).  He is already at the maximum dose, so they take blood - tell me the results and send him home.  He is usally wacked out for at least a week.

This time it was worse - he never really recovered his balance and coordination.  He is so shaky and seems to be physically declining almost daily.  He saw a Neuro yesterday who gave us adavan(?) to stop the seizures so we won't have to go to ER.  He told us that his physical symptoms are definitely a sign that the tumour is progressing.  He wants to wait until the end of the summer to start decadron, but we may to start sooner.  He can't stay awake for more than 2 hours at a time.

It looks like the beginning of the end.  I have lived with this black cloud for 6 years and many times just wanted to pretend that it wasn't really happening.  We could still go out as a family (4 daughters) and we were happy that we had beat the odds, but it looks like it has caught up to us.

He can't go anywhere - gets too tired.  He missed all of the high school graduations and is going to miss my daughter's University graduation this spring because the noise and confusion get too overwhelming for him and he freaks out.