10/05 Gbm iv Diagnosis Questions on Houston

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10/05 Gbm iv Diagnosis Questions on Houston

by Cindy217 on Wed Oct 12, 2005 12:00 AM

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My husband was diagnosed with GBM IV on 10/01. He had a 4 hour brain surgery and 90% of tumor was removed. The tumor was cystic type and on the Parietal lobe the size of a lemon. He is 42 years old and has been in good health. He had been having dizzyness and pressure when standing. Our allergist ran an MRI with contract and found the tumor. We went to surgery expecting an abscess and I was given the terrible news of GBM Multiforme IV. He has already taken 5 days of temodar and in one week we are starting radiation and temador. The radiation we are going to use is on every 5th day they are going to to an Accelerated Radiotherapy using weekly Stereotactic Conformal Boots for Supratentorial GBM. I had some questions for to see what treatment has been used. I saw someone that had been to Houston for treatment. Has anyone been given this trial on radiation? Anyone that has been to Anderson in Houston what type of treatment were you given? Anything different from Radiation and Temador or in addition to this course? Thanks for any info in advance.

Gbm 4

by Rosemarie_B on Thu Oct 13, 2005 12:00 AM

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The one’s that rate hi is UCLA, Denver, and Houston in brain tumors.That don't mean thy are the only one's, I think each one has a lot so don’t think that each place can’t do some thing , But remember that can you move there and do treatment every week and do you have Insurance for that place . My wife goes to Denver she has a GBM 4 and we are at 29 months and doing great, and we did look at Houston and some others to. But the big thing is to start now don’t Waite. It is a hard road but you can do a lot with all the new things out there. Mike B.

Cindy217

by Garland on Thu Oct 13, 2005 12:00 AM

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i'll keep you guys in mind and on heart...go to another website..www.braintumor.org...and you will get a faster response and probably more persons with the experience you are looking for

Gbm

by Rosemarie_B on Thu Oct 13, 2005 12:00 AM

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I guess I have a problem with any board that the new thing is at least 6 months old. They don’t have any place where people can go and just chat and does it all the time There GBM board is 03 that tells me know one wants to be there.

Cindy217

by Luvingwife on Thu Oct 13, 2005 12:00 AM

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cindy: I am not sure what it is you are describing, but here is a great resource. www.virtualtrials.com There are links for "newly diagosed " all the clinical trials, glossary, and a description of treatment options. It is constantly being updated. Read the article by Ben Williams, it is so informative. there are links to some survivor stories that you might find encouraging. I am not sure about Rosemarie's comment about www.braintumor.org web site. The message board there for GBM has been a great tool for me, and I see new posts every day. It is the only message board that I am aware of that is specifically about GBM. The board there is much more active than this board and the messages are relative to GBM, not all kinds of brain tumors. good luck with it all. I am sure it seems like an awful lot of crap right now I am the wife of a gbm patient (diagx 5/2004). He is still working, golfing, traveling. Treatments have incl. surgery, Temodar, external beam radx and IMRT radx boost with Novalis Brain Lab. Stay positive! Luving Wife

Gbm

by Garland on Thu Oct 13, 2005 12:00 AM

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I would have the same problem...you must have gone to the wrong site or read the board incorrectly because people post on that site almost hourly. It also allows you to speak just to GBMers. Also, www.virtualtrials.com is a great site and it has a chat room.

New Gbm Patient

by Mrmarmot on Thu Oct 13, 2005 12:00 AM

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WE CHOSE to do treatment locally (Yuma,AZ). However with treatment protocol you are looking at Anderson could probably supervise what you get locally If the proper radiation euipment is available. I've nothing negative about Andderson. Comuting there might be a possibility but.Keep in mind that FATIGUE (not just tired and LOW energy is likely to be a factor and that with priatal involvement he my experience a variety of mobility issues. I HAD 3-4cm tumor removed 3/2/05. have been but get around independently using a cane since June not driving! There have been ups-downs wit about a week with walker and another with wlker and wheelchair just qftercompltion of rad (last couple of weeks with rad included 300 mg of temador as well - took better part of 3 weeks to recover They uped the steroid with MARKED improvement (out of wheel chair 4-6 days walker to cane 3-6 more. Follow steroid rx exactly!! They are'nt kidding when they say there is potential for a crash if you don't follow direcctions fOllow directions you can feel pretty normal and retain most of your independence otherwise you can get to feeling pretty yechy and its MUCH more likely for the Fatigue to jump out and bite you big time.

RE: 10/05 Gbm iv Diagnosis Questions on Houston

by John_b on Wed Feb 07, 2007 12:00 AM

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Hi,

My 38 year old wife and business partner was diagnosed with Astrocytoma stage I, 24 months ago.  They were only able to resect about 20% due to the location in the brain..We went after the tumor with stereotactical radiation with no success.  The thing doubled in size while we were treating her.  Last summer they upgraded the tumor based on scans to GBM IV.  She very quickly lost her ability to walk and became somnolent.  She has had a bilateral shunt installed to relieve pressure.

We have tried lots of alternatives like diet based cures and even the Burzynski Clinic in Houston with no success.  Even have tried rife therapy.  She became so run down from the radiation and chemicals (long-term steroid use) last Fall that we almost lost her to a systemic infection.  She was in a coma in September and they said she would never wake up...

 Well......she did wake up!  When we brought her home three weeks later we made a conscious decision to take her off the steroids.  As we have phased her off, she has steadily become stronger (started physical therapy and is beginning to walk again!)  And she is sleeping better at night.  We restarted our volunteer work with junior high aged teens last month.  Two weeks ago she was pitching a kickball game in her wheelchair!  Now that she has sailed off the end of her 6 month Hospice referral, she will need another scan.  I've got mixed feelings as we wait, but here's what I know..

 It is always worth it to keep trying.  Statistics and estimates are only meaningful to statisticians!  Quality of life can be found way into this disease.  We don't know how this will end, but in my mind, she is already a hero because of her positive attitude and desire to live and live well in the midst of this.

 Planning our next cruise in Oregon.  Never giving up!

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