.Comment 001
mY SON WAS DX WITH GLIOMATOSIS CEREBRI 9-29 He is 14 years old and we have been in hhospice care for 5 weeks. I am trying to learn more about this disease and to hear from other people affected by it. Tavana Brown - Zachary Lopez's mom iesf@electrotex.com
Comment 002
My 13 yr old grandson dx with gliomatosis cerebri on 1-9-98 in his left frontal lobe. Had six weeks of radiation and 1 year of chemo -tumor shrunk some and had no progression. Justin O'Neill-from Bmt,Tx area. Would like to receive info and will send info we have to you on this disease. Contact me at met@electrotex.com
Comment 003
My husband was dx with geloma tosis cerbri in Feb. 99 it has infultrated 2/3 of his brain, His initial sympt. were headaches and vision problems. the nuro surgen did a biopsy March 15 which confirmed the initial dx. he removed some bone, but had to do another surgery the same evening to remove a larger portion of skull due to swelling. He had a very rough time for a week but is home now, He is on his 4th round of cemo, last p showed no change in the tumor. He will have another MRI on Sept. 1 and see the surgen on the 3rd. We do not want radiation done due to them having to do the whole brain Nancy ncbwdb@aol.com
Comment 003
correction to e-mail address ncdwdb2@aol.com
Comment 004
correction to e-mail address "again" ncbwdb2@aol.com
Comment 005
my best friend,Tracy,was diagnosed with brain Cq in April of '92.During the last month of her pregnacy,she developed headaches.She was seen in a few local E.R.'s during some episodes, and was accused of "only wanting drugs".C.T. WAS NEG,MRI WAS SUSPICIOUS(FOR C.P.),AND A BIOPSY CONFIRMED GLIOMATOSIS CEREBRI.SHE WAS GIVEN A PROGNOSIS OF 2-5 YEARS.SHE LIVED 5 YEARS AND 1 MONTH. SHE DID CHEMO AND RADIATION.SHE WAS A VERY THIN 3 BEFORE SHE GOT SICK-120 LBS. WHEN SHE WAS 9 MOS. PREGNANT. DURING HER ILLNESS SHE MANAGED TO WORK FULL-TIME AND RAISE A FAMILY.LOOKING BACK NOW,I THINK SHE SUCCUMBED TO ANOREXIA. SHE WAS PROBABLY 65 LBS WHEN SHE DIED.ONE DR. FROM COOPER MED CTR THREATENED TO START "TUBE FEEDING" HER AT HOME IN OCT '94. SHE DIED MAY 7,1997.I MISS HER DEARLY,AS I KNOW HER YOUNG CHILDREN DO. THAT'S IT.
Comment 006
Comment 007
cappy@21stcentury.net i am curious to learn how pt 011te113.html is doing. does anyone out there know of the latest treatments for gliomatosis cerebri? the prognosis? PLEASE help if you can. Thank you.
Comment 008
My father is 51 years old and he has been diagnostic the gliomatosi cerebrii. He hasn`t any symptoms. Please we need help because we don't know any thing of this tumour. We have search in internet and have not found anything. We want to know the terapies, survival, and talk to other persons who have the same problem to explain us his experience. Please help me !!! ORIOL(july 2000)
Comment 009
My wife 31 years old has ben diagnosed with a difused gliomatosis, benign and low grade over a large area of her brain (white matter) - especially the talamus. First symptons: no blatter control (impossible to urinate) and (later) headaches. Diagnosis could be establsied only after a brain biopsy of the front/middle part of the brain. Radiation doens't seem to be a good option as the entire brain area would need to be radiated (secondary neuroligical effects). Specialists in Switzerland now recommend treatment with Temozolomide (temodal) which has had spectacular results in another case. Please let me know if you have any experiences to share with respect to temozolomide in case of difused gliomatosis. It will be extremely important to share thisinformation as only few clinical tests are available for this desease with this medicine. Please write back to: sonnevel@iprolink.ch
Comment 010
Our son was diagnosed with Gliomatosis Cerebri on 2/28/01. We were told the average life span of this disease is 2 months to a year. We are almost at our 1 year mark. Unsuccessful radiation was done and now getting ready to start 9th round of Temazolomide. So far tumor has been kept at bay on this chemo. Next MRI scheduled for 2/19/02. Any comments please send to miraclebob@aol.com. Thank you, Heidi.
Comment 010
Our son was diagnosed with Gliomatosis Cerebri on 2/28/01. We were told the average life span of this disease is 2 months to a year. We are almost at our 1 year mark. Unsuccessful radiation was done and now getting ready to start 9th round of Temazolomide. So far tumor has been kept at bay on this chemo. Next MRI scheduled for 2/19/02. Any comments please send to miraclebob@aol.com. Thank you, Heidi.
Comment 011
My name is Lisa and my daugher is April. She is 19 yrs old. She has had gliomatosis cerebri since birth. She has had a hemispherectomy. Like others with this condition, I can't seem to find anyone to talk to about this. It is so rare. Please contact me, I would like to know others experiences. Thanks melheim@charter.net