Temodar advice/info

oystertaco24

I know many people tolerate
I know many people tolerate Temodar well, but I was not one of them. My oncologist, knowing that I'm young and otherwise healthy, wanted to try me on the strongest treatments she could get, knowing that I'd be likely to tolerate them. I got the highest Temodar dose allowable. I was fine on the daily Temodar during the six and a half weeks of radiation, but I couldn't handle the five-day cycles (in which the dose was tripled!). I was fine for, say, days 1-3 of the two cycles I tried, but getting up on day 4 just didn't happen. From day 4 until about two weeks past that, I was pretty ill. I missed a lot of work and spent the majority of this past summer on the couch. I was vomiting almost daily (even embarrassed myself by throwing up at two of my favorite restaurants), and my white blood and platelet counts were so low I nearly had to start getting transfusions. To make things even better, my tumor (grade III anaplastic oligodendroglioma) grew despite this supposed pounding! Once it was determined the Temodar wasn't working, I had to have blood drawn at least twice a week to ensure my platelet and white blood counts were going back up to a certain point before they could try something new. That took nearly a month!

I tried the Zofran for nausea at first. It worked on the nausea, but made me so horribly constipated that I will never take it again. Kytril seemed to help on the second cycle, though.

Apparently, my insurance requires that Temodar be tried and deemed ineffective before they'll pay for any other chemos. It turns out that my oncologist didn't really want me on it at all and wanted to go right to the Avastin, but BCBS said otherwise. Awesome! Thankfully, the Avastin seems to be working much better. Temodar seems to be fine for many people - but unfortunately, I was not one of them!

momsworld

oystertaco24 said:

I know many people tolerate
I know many people tolerate Temodar well, but I was not one of them. My oncologist, knowing that I'm young and otherwise healthy, wanted to try me on the strongest treatments she could get, knowing that I'd be likely to tolerate them. I got the highest Temodar dose allowable. I was fine on the daily Temodar during the six and a half weeks of radiation, but I couldn't handle the five-day cycles (in which the dose was tripled!). I was fine for, say, days 1-3 of the two cycles I tried, but getting up on day 4 just didn't happen. From day 4 until about two weeks past that, I was pretty ill. I missed a lot of work and spent the majority of this past summer on the couch. I was vomiting almost daily (even embarrassed myself by throwing up at two of my favorite restaurants), and my white blood and platelet counts were so low I nearly had to start getting transfusions. To make things even better, my tumor (grade III anaplastic oligodendroglioma) grew despite this supposed pounding! Once it was determined the Temodar wasn't working, I had to have blood drawn at least twice a week to ensure my platelet and white blood counts were going back up to a certain point before they could try something new. That took nearly a month!

I tried the Zofran for nausea at first. It worked on the nausea, but made me so horribly constipated that I will never take it again. Kytril seemed to help on the second cycle, though.

Apparently, my insurance requires that Temodar be tried and deemed ineffective before they'll pay for any other chemos. It turns out that my oncologist didn't really want me on it at all and wanted to go right to the Avastin, but BCBS said otherwise. Awesome! Thankfully, the Avastin seems to be working much better. Temodar seems to be fine for many people - but unfortunately, I was not one of them!

My daughter
My daughter was on Temodar for 6 weeks during radiation treatments. We found that the temdodar made her very sick and tired all of the time. She is 13yr. We had her first MRI 3 weeks after her treatment cycle ended and the tumor had come back, even during treatment. She had her 3rd crainiotomy 3 days after the MRI. The surgeons removed the tumor again and said that there was nothing let for them to do. Well as a parent I was not willing to accept that answer, so We headed to Boston Mass to the Dana Farber/Jimmy Fund Clinic. They have given us options to consider. My daughter is now on a 5 drug regimen. She takes 3 oral chemo meds everyday and everyother week she does IV Avastin. These meds together are supposed to stop blood flow to cells(good and bad). Hopefully this treatment will stop blood flow to her tumor cells and they will die. She has to be really careful with germs and wounds as they will not heal fast because of the meds. She is now being tutored at home and carries hand sanitizer where ever she goes. For the nausea, she uses kytril. works so much better than zofran for her. At this point I am willing to do whatever I can to save her life. My daughters diagnosis is AA3 and unfortunetly i have been reading some sad stories lately, but i am not giving up. She is all I have. I already lost a baby at birth and she was born 7 weeks early. Shortly after that I had to have a hysterectomy due to complications. I know the lord is taking care of her, myself and anyone else who has to suffer from the awful disease named CANCER

cindysuetoyou

momsworld said:

My daughter
My daughter was on Temodar for 6 weeks during radiation treatments. We found that the temdodar made her very sick and tired all of the time. She is 13yr. We had her first MRI 3 weeks after her treatment cycle ended and the tumor had come back, even during treatment. She had her 3rd crainiotomy 3 days after the MRI. The surgeons removed the tumor again and said that there was nothing let for them to do. Well as a parent I was not willing to accept that answer, so We headed to Boston Mass to the Dana Farber/Jimmy Fund Clinic. They have given us options to consider. My daughter is now on a 5 drug regimen. She takes 3 oral chemo meds everyday and everyother week she does IV Avastin. These meds together are supposed to stop blood flow to cells(good and bad). Hopefully this treatment will stop blood flow to her tumor cells and they will die. She has to be really careful with germs and wounds as they will not heal fast because of the meds. She is now being tutored at home and carries hand sanitizer where ever she goes. For the nausea, she uses kytril. works so much better than zofran for her. At this point I am willing to do whatever I can to save her life. My daughters diagnosis is AA3 and unfortunetly i have been reading some sad stories lately, but i am not giving up. She is all I have. I already lost a baby at birth and she was born 7 weeks early. Shortly after that I had to have a hysterectomy due to complications. I know the lord is taking care of her, myself and anyone else who has to suffer from the awful disease named CANCER

Thank you for the update
Hi, Momsworld.

I have been wondering how you and your daughter were doing. I have a hard time finding updates with the way this network is set up.

I have been praying for you and your daughter for months now, ever since your post when you said that there had to be something else and you were going to get another opinion. I'm very glad that you did go to a different doctor(s). I hope that this new treatment helps your little girl. She has been through so much for a 13 year old....she has been through things no adult wants to face. I hate it for her and for you...I hate it for all of us.

I admire you for your fighting spirit and your trust in the Lord. I pray that He will continue to give you strength, and that your daughter's condition will improve and that this new treatment will kill off any lingering cancer cells. Please keep us on this site updated on how things are going for you and for your daughter. You are not alone in this battle.

Love, blessings, and peace to you,
Cindy in Salem, OR

sfg1017

RLR said:

Temodar
Hello:

I am 56 and have had glio blastoma grade4 since Dec 08 and had surgery in Jan,09. I have been on Temadar ever since that time. The biggest thing I can tell you to help is to drink a LOT OF WATER and I mean a LOT. Before I was drinking a lot of water when taking the pill I would get sick and vomit every night. When I say a lot I always drink about 2 to 3 -20 ounce glasses of water after taking the chemo. I always take it at about 6:00 to 7:00 pm along with the anti-nausea pill and drink the water before 9:00 or 10:00 pm. I have never gotten sick after doing this.
As you can see I have been on chemo for 1 1/2 years now and my Doctor says will be on it the rest of my life.But it has been working very very good for me!
Good luck

Temodar recommendations
RLR, I am so glad I saw your post. My husband was diagnosed with a GBM on 9/1/10, had surgery 9/6/10, and completed a 6 1/2 week course of radiation and a lower dose of Temodar. On January 7, 2011, he started the 28-day cycle of Temodar on days 1-5 and topotecan on days 2-6. He was doing great, taking his Zofran an hour before his chemo and then on day 7, just threw up out of the blue...no real warning. Yesterday he was just tired all day and only worked half a day, but didn't throw up. He continued to take his Zofran. Today he got up and felt good. He ate 2 poached eggs and and some fresh fruit and immediately got sick afterwards. He hasn't eaten or drunk anything since. He got sick again this afternoon. The nausea is not an all-day event...it just hits him. Did you or any others on this site experience this sickness after completing the 6-day cycle? I have encouraged him to drink the water like you said but he has not. I feel so bad for him. Thank you to anyone out there.