Gmb Anyone In Arkansas

Anyone in Arkansas going through GBM??

Yes, my husband has had a third recurrence with initial diagnosis 13years ago. Started out as an anaplastic Oligo and now its GBM sitting on the left motor strip. We are not happy with treatment from UAMS and using MD Anderson via phone and our local oncologist to begin chemo as this seems to be the only option. He has actually done very well the last 13yrs considering all... until now. This is his third recurrence. We had great experience the first two times at UAMS , very competent crew but the crew we had this time very incompetent. Our initial neurosurgeon moved off , sure wish he could come back to Arkansas. What about you, tell me your story. Cynthia

My husband found out in November 06 that he had GBM in the center of his head.  Stage IV.  We had surgery on December 06, 2007.  He did great and has handled the 6 week of radiation and chemo well.  We went back in March and they said the tumor was still the same size it was after surgery.  Due to the location, the could not remove it all.  We started back on chemo for 5 day cycles for 6 months.

We've never been able to seen the same doctors at UAMS since surgery.

They keep telling us that he's getting the standard protcol.

We have no idea if this is good, bad or what.  It's so flustrating.

We just went back again last week but of course the surgeon was not there to read the MRI, so we have to go back May 5th and hopefully we'll find out something.

He's still able to work 10 hour days however he's very tired every day.

I've not found anyone in our area who's ever had this.

He's only 42 and has so much life to live yet! I want to know that we're doing everything possible.

What kind of insurance do you have? I would certainly suggest a second even third opinion. This third recurrence we have had to do this as the care we received this time from UAMS was very incompetent, our past two times with UAMS we were very confident with their skills and suggestions and this time we are like you, feeling very lost. uncertain. I will be filing a complaint in the near future, a very long one. Anyway I can help let me know, you can do a self-referral as I did with MDA follow this link: https://www2.mdanderson.org/sapp/contact/selfreferral/index. they have helped us out very much and return my calls the same day! Hang in there Cynthia

My sister is in Little Rock and has been battling GBM since Jan '07.  Dr. Adada, at UAMS, is her neurosurgeon.  I am an R.N. and must say that his bed-side manner impressed me.  I also believe his skills are superior.  He was able to remove Debbie's precariously positioned tumor after a well-known surgeon (in private practice) would not even attempt the procedure.  I forget the name of Debbie's oncologist (at UAMS) but my sister seems confident about the care she is receiving there.  The only drawback, at this point, is the amount of time it takes for appointments/tests, etc.

Debbie was also seen at M.D. Anderson but did not get in a clinical trial there, so is now taking Avastin/CPT-11 at UAMS.  Because she is not part of the clinical trial, her insurance company (BCBS) will not pay any of the costs of the chemotherapy, which as you probably know, is $6000/dose and she has been getting a dose every 2 weeks since Sept '07.

So, this enemy, this monster called GBM, is never satisfied.  It has no mercy and doesn't settle for taking one's health and life, but it also drains all financial resources.

I've probably rambled on and given you too much information. 

How are you doing?

Donna