Temodal

Hello Billie,
My Mom was diagnosed with GBM 4 on May 16th. Her tumor is sitting right on top of her brain stem, so surgery is not recommended. She started her treatment at the Duke Brain Tumor Center with 6 weeks of chemo in hopes of shrinking the tumor before radiation. During the first 6 weeks of chemo, she tolerated the drug well. No hair loss, just sporatic fatique. She is now into her 4th week of radiation with stereotactic boost combined with Temodar chemo. The chemo effects have been mild, but the radiation is increasing the swelling in her brain.

Temodar is know for it's mild side effects and is (as far as I know) taken orally at home. My Mom hasn't had any nausea or loss of appetite. If the radiation is successful at shrinking the tumor or at least arresting the growth, she will continue taking the drug indefinitely. (The thing she hates the most is the decadron)

These types of tumors grow so fast that you need to consider that 3 months w/o chemo isn't necessarily 3 good months, it's 3 months that the tumor is growing and creating more deficits until the end. It’s a tough decision, but my advice is to try the drug and see how well your father-in-law tolerates it.

If you (or your wife) would like someone else to talk to who’s going through the same pain, please feel free to email me. My mom has also expressed an interest in talking to a fellow brain cancer (GBM especially) survivor - which is what she and your FIL are & will be.

elizabeth

designlab@earthlink.net

Hi, my name is Denise and my mom was diagnosed with GBM4 nearly 5 years ago. She had her 1st craniotomy 11/98 & her second 3/03. UCSF suggested she begin Temodar in May 03. She has just finished her 4th round of 350 gms of Temodar . My mother has done exceptionally well with this drug, with no side effects at all with the exception of a little fatigue for the first couple of days. Like you, we were very hesitant, we did not want her quality of life to suffer. I would highly recommend this drug to slow down the progession of this terrible disease. My mother had a follow-up MRI in July and it showed a slight decrease in the size of the tumor site which was very good news. I wish you all the best. Denise

jomareno said:

Billie,my husband has the glioblastoma tumor.surgery attempted Nov.99 only gave him 6mo's.he had 6wks.of radiation 2yrs chemo.in april of this yr.he lost use of his rt.arm & hand over night.our dr. told us about Temador.for reoccuring tumors.(not temodal) don't know if this is the same or not. we took 5 pills.this was in may.he started to feel poorly in June.His blood dropped he had 2 units 7-7 and on 7-20 he was adm.again with temp of 104 he ran temp not under 101 for 14 days and was given 4 more unit of blood during that time.to this date we have had 2 units of blood every 14-16 days.and still running a temp.every day mostly in the late afternoon& night.Drs say the temp is from the brain but they cannot find where his blood is going. we had no problem with the blood til we took the temador.

My daughter took temodal for 12 months - 5 pills per month after she was diagnosed with an inoperable grade 3 anaplastic astrocytoma. She also had 6 wks of radiation. She tolerated both well and is currently in remission - or as her dr puts it - the tumor is dormant at this time. She did have problems with her white blood count dropping during the chemo treatments. We finally figured out that she was taking ibuprofen for headaches/cramps and that was causing the problem. She quit taking ibuprofen and the problem was corrected. She simply switched to tylenol. We never imagined that such a simple otc drug could cause such a problem.