Tumor Is Stable But Physical

My son has a GBM in his right frontal lob.

since August his tumor has only grown with 9%.  The tumor is stable for 5 months. I much say there is allot of edema. 

But if you look at him, he does not look well. He is very sleepy, does not eat very well and is not feeling very good overall.  He can barely walk, most have support.  Cannot bath himself, cannot eat alone.

He is on 10 mg Decadron a day. He is on alternative medication.  I am sorry but I will never but him on Themadol again.

I want to know if anyone else is experience this. Physical he is not doing well.

Actually I am very confuse about his state.

My husband was Dx in Dec 07 and he has gone through the surgery, removing most of the tumor then radiaiton & Temodar which did not work and now is on Avastin and CPT 11. He has had 5 treatments of this regime and is due for another MRI soon.

He is usually good in the morning, slow moving but can move alone then by night time he needs the wheelchair to go back to bed. His short term memory isn't good but long term memory is fine.

I have to say his appetite is really good (he's gained 10 pounds) but a lot of the weight gain could be because he is on 12 mg. of decadron a day. They tried to bring him down to 8 mg. but he had a seizure because of the edema. He takes 1500 mg of depakote and 500 mg of dilantin to control the seizures.

My dad had similar symptoms before they put in a shunt to remove the buildup of excess fluid. Weak, tired, sleeping all the time, disoriented, etc. With the shunt he has improved quite a bit.  

Talk to the doctor about his symptoms.  The Decadron certainly can be causing him to be sleepy, etc, but it could be a build up of fluid as was the case with one of the other responders to your message.  Only diagnostic testing will tell for sure.

You say he is on alternative medicine - would be helpful to know what he is on, to see if that could be contributory  to him not seeming to do so well.  Everybody's body chemistry is different.  Just as some prescription meds and chemotherapies are good for some people but not others, the same can be true for alternative treatments. If you are getting guidance from someone about this alternative treatment, let them know about these problems - they may have encountered them before and have answers for you.

Don't let the doctor give you any problems about investigating why he is so lethargic and unable to do things for himself.  If you don't want to go back to the other treatment - that is your right.  Some doctors will say that if a patient will not take conventional treatment there is nothing more they can do for them, but that is nonsense.  Patient's and their families have a right to choose, and the medical establishment is not justified in denying care just because a patient has exercised that right to choose.  Tell the doctor you expect him to keep working with you on this while respecting your wishes, and that if he does not you will report him to his employer and the medical board.  If you don't get help from this doctor, or if he says there's nothing he can do, get a 2nd opinion.

If the doctor wants to do more tests, I would let him.  If they say it is fluid pushing on the brain and they want to insert a shunt, I would think that is a reasonable solution.

Good luck, and the best of health to your son,

Sincerely, Tre

For the excessive cerebral edema I've heard of them doing a shunt. And also times when looking at the MRI you can see a cyst form (fluid filled with edema) that is in the cavity where the tumor was resected. They go in with a needle and take out the fluid its a pretty simple and minimally invasive procedure. I'm not sure if you sons was removed if this could be the case.

I'm sorry to hear about the Temador. Did he not tolerate it well? Has your neuro-oncologist brought the idea up for Amvastin?

I get so angry at this Cancer because so little about it and available treatment options are known. And the Medical community has neglected to put resources into investigating GBM and new treatments.