On 7/9/2009
scaredandconfused328 wrote:
Hello,
I am new to this site however am in much need to support. My boyfriend has just been diagnosed with Gliomatosis Cerebri (based on CT/MRI scans).
We have not had a biopsy. Can we demand one? Is there clinics/treatment centers that have a proven record of treating this condition?
I have read EVERY article of information available so I don't need to know the definition/grim prognosis.... What I need is advice, direction... Specific chemo/treatment available....
***He is experiencing violent headaches and vomiting... any remedies/advice as to how to handle besides more medicine???
Thanks so much for any response!!!
Good afternoon - like you, my muscle man was diagnosed with gliomatosis cerebri. I am so sorry - no one should have to go through this. It was a difficult and complex prognosis and for us, it has ended up being more of putting many factors together to determine this diagnosis. On biopsy, histologically he was graded with (3) Grade III astrocytomas. However, the problem with the biopsy is that since GC is comprised of many different type of cells, that is just what the biopsy picked up. They could biopsy (from what I understand from our NO) another spot and find different cells and possibly get a different diagnosis. It is rare and because of that, there isn't alot of research papers out there to tell you much. A nurse myself, I have access to many different medical search engines and have found little. As I have read more to see the differing symptoms (e.g. Parkinsonian like symptoms, inflitrative tumors often bilateral, etc. etc.) it is a like a checklist for him and he checks off on everything! For us, the biopsy says one thing but his symptoms say something totally different. What is funny is that from the very beginning, even though they had determined that the sample had AA cells, our NO and neurosurgeon kept telling us that they thought it was probably a glioma.
We are being treated at MD Anderson and I can tell you what they are doing for us. First - we got massive radiation for 7 weeks. They basically irradiated almost 2/3 of his brain. Two of the infiltrative tumors are inoperable, he could have had debulking of the large, parietal tumor but declined since it was closed to his motor strip. He was worked out his entire life and the gym and free weights were his addiction. He is 60 years old and before diagnosis, he had the body of a 30 year old with a muscle mass that was like WOW - and only 5% body fat plus he was a sprinter. So - he was in the best physical shape he could be in and had never been sick a day of his life (the irony of it all!). The radiation kept the tumors stable but did not shrink them (as the evidenced based practice states). We are now being treated with Temodar (finishing cycle #2 at maximum dosage tonight) and will be getting a MRI next week to determine the next game plan. My understanding is that they treat GC in the same manner a Grade IV gliomas. We have been blessed - no headches at all although initially extremely high ICP and a midline brain shift. We are on Dexamethason (big dose!), Keppra and Dilantin for the focal and Parkinsonian like seizures/symptoms and of course, Temodar and Zofran for nausea. His personality changes continue to exhibit themselves and I just try to remember that he doesn't mean what he says. I always have hope but continue to be prepared for the worst. HIs overt symptoms began in September 2008, full focal seizures in Feb 2009, intial diagnosis with AA in Mach 2009 and in June, I was told that it was GC.
I strongly urge you to continue to research, write down your questions and find a really good neuro-oncologist with a strong cancer center. We are blessed as we live 15 miles from downtown Houston and MDA. When I found out I got myself a psychotherapist, a homeopath, scheduled an appointment wiht my own personal MD, increased my yoga practice and prayer. I have had time to get used to this but I still get very angry and scream (usually in my car - no telling what the neighboring drivers must think). None of us know why we were chosen to walk this path, but the lessons of love (and I can honestly say I really know what love is now) are immense.
You are the only other individual on this site so far that shares our diagnosis. So - my name is Gina and I am here for you. Please feel free to ask any questions that you may have - if I have an answer I will tell you what I know. This beast is a difficult creature to deal with and each individual responds to treatment and the disease course in their own way.
The hardest part for me is that I always knew from the beginning that muscle man and I were dealing with something very strange and very rare but those fears weren't realized until recently. The loss of control for both of us has been overwhelming. Take care and I am here -- gina