Starting Temodar - Please Help

I am scheduled to start my first round of Temodar next week and am very scared. I am newly diagnosed with a grade III astrocytoma. Any information or suggesstions that you can give me would be greatly appreciated. Will I lose my hair? I know that may sound really vain but I have seen the looks that people give when someone with cancer walks into a room for the first time after they have lost their hair. Will I be able to work or will it make me to tired? The doctors are being optimistic about the medication but I have heard about some of the side effects and was hoping to get first hand advice.

Thanks

I lost no hair while on Temodar. The only hair I've lost was from radiation.

Make sure your oncologist gives you a good strong anti nausea drug. I took Zofran about 30 minutes before taking my temodar. I did this at night and then went to bed 30 minutes after taking the Temodar.


I took temodar for 5 days a month. The first 3 days of taking the pills I was fine but days 4 & 5 I was very tired. I was tired for a couple days after the cycle but then got my energy back before it was time to repeat the process again.

While I Temodar I never got sick. My stomache got a little rummbly every now and then but I would just take some anti nausea meds.

Other then fatigue those last couple days of taking the pills and the couple days after, the only other side effect I had was constipation every now and then. Nothing some over the counter drugs couldn't fix.

Best of luck to you.

My wife was dx with an operable GBM June 1, 2005 and is currently on Temodar/Gleevac combination. She has done really well with Temodar and continues to work, exercise, and feel good. There is some mild nausea with Temodar which Zofran easily controls. Also, she has had zero hair loss with Temodar. The very best thing you can do for yourself is to keep active, eat well, and rest when your body needs it. Good luck!

I've been on Temodar for 16 months...it hasn't been a picnic but I'm still kicking. Following the instructions closely and best of luck.

My husband was on temodar for a month and had to come off it because his blood counts went way down, his platlets were down to only 6000 out of 140,000 min his white count was down to .04 out of 4 which is the low side and his red count went way down also. He was considered neuprophenic and was hospitalized for two weeks, he had to stay in a room by himself and we had to be very careful when we were with him. He had nothing to block infections or bleeding. He finished his radiation and when we go back to the oncologist we will discuss whether or not we will go back on temodar. We have been reading and following Fred Eichorn of the ncrf.org. He was recommeded by our family doctor and has had wonderful results. Good luck and God Bless.

I was on Temodar every day while taking 33 radiation treatments, Mon-Fri. Be sure you are on laxatives for constipation and Zofran for nausea. You should have your blood checked weekly for Platelet count as mine got so low I started to have spontaneous internal bleeding, mostly bruises. I got two platelet transfusions and stopped the Temodar for a while, once I got my clean MRI last August, I started a preventative Temodar course of treatment that is every day for a week, once a month for 18 mo. Start the laxatives (Senokot-s, or a generic which I use, Senna-S from Kroger, cheaper and works fine) After you take the last Temodar for the week, continue to take Zofran for one or two days as the effects of Temodar linger, and continue on the laxatives for 3 or 4 days or you will be sorry. Not a big deal, and Temodar is so much easier than "the drip". You're lucky as I am that Temodar exists. I hope you have a good oncologist who is monitoring you weekly and later monthly. Mine is Dr. Robt. Albright at Good Sam Hospital in Cincinnati. He's fantastic!
I'm in full remission and expect to be around for years. Good Luck, there is hope!!!!
Paul
p.s. all my hair loss was before I got cancer :-)

My 28 year old son was fighting Melanoma, as his counts were extremely low from treatment, he got an infection, it went to his heart, endocarditis, the infection broke off and caused a small heart attack ( damaged valve) they would not operate to repair the valve, said he would not survive the surgery, he passed away from congestive heart failure, after all the treament we went through to be this cancer, an infection got him.

His cancer started from a mole on his side, he went several places, one his brain, 3 small spots, after 2 rounds of Temodor the spots were gone, however it came back on his side.

I start a 42 day course of radiation and Temodar on 8/23 for inoperable grade 3 astrocytoma in the left temporal lobe. So I am a month behind you.