Low Grade Glioma

I have been taking Temodar since Oct 2004. For 2 years I took 400mg per day for 5 days with 23 days off. It was horrible, but the tumor remained stable. Then the DR started 200mg for 10 days with 18 days off. That was much better,but still not great. For about 18 months I have been on 100mg per day for 20 days with 8 days off and the tumor has remained stable. My quality of life is decent but, I have chemo brain. The DR has offered to let me stop taking chemo. He states I would have a 1/20 chance it will grow. I would like to know if anyone has any advice on this?

Did you have surgery initially?  Are the serial MRI scans all stable?  If after 5 years of stable MRIs and no signs of recurrence, if your physician feels it's safe to stop, this may be the right time to do it.  Few doctors would leave you on treatment for a low grade tumor for so long if there were no indications of recurrence.

 

On 10/15/2009 Lorre G wrote:

Did you have surgery initially?  Are the serial MRI scans all stable?  If after 5 years of stable MRIs and no signs of recurrence, if your physician feels it's safe to stop, this may be the right time to do it.  Few doctors would leave you on treatment for a low grade tumor for so long if there were no indications of recurrence.

No! Surgery was not an option. I have scans every 3 months and it has remained stable,but the tumor is still there.

That sound like good news, try to take it as a good thing.  Stable is better news than what you could have recieved.  You may have months or years of stability.  Live well and full, try to stay healthy and positive.

Power to you

God Bless

 

Conrad

Thank You Conrad. I am very scared to stop the Temodar. I am trying to make the best decision. I feel very lucky to be able to make this choice,but I have been told that if the tumor starts growing then Temodar will not stop the new growth. Does anyone have any experience with this?

Yeah, I did the temodar 350mg 5 days on 23 off for 12 months.  The tumour actually shrunk to smaller than when I was originally diagnosed and in August 09 an MRI revealed a small amount of enhancement indicating some activity.  So now I am doing 30 treatments of radiation along with 150mg of temodar each day ( radiation only mon-fri) tomorrow will be treatment 20 for me.   I am hoping to shrink the tumor down more or make it go away for a while.  I know it will come back but because I have an Oli II, they are supposed to be slow growers, I might get some years 1-5 before having to deal with it again.  And by then they may have something more effective and lasting to treat with.  You can tell by now that I have faith and am a cup 1/2 full kind of guy right ;-)

Take your blessings where you can, hang in there and keep in touch.

You've been on Temodar for five years? That surprises me as I understand that being on Temodar for a long period of time can result in other cancers (i.e. - leukemia). 

Sorrry, must have been a miscommunication there.  I did not mean that I will be on Temodar for 5 years, I was saying that I was hoping for some years of stability or progression free survival 5 years would be an awesome gap before having to resume some sort of treatment/procedure.  And maybe five years will be enough for someone to find a cure or something to manage this like diabetes. Heres hopin.

 

Conrad

Hi, My brother was on Temodar 5/23 since 2004. I think it is unusual to be on it that long. His platelets dropped last Nov. and they started several additional drugs to deal with it. He stopped taking Temodar in early spring and his platelets came back up to normal. He has a grade 2/3 astrocytoma. He is now trying Avastin and will be going in for scans after a period of treatment. So far, the Avastin has been very tollerable. Hope you are well and strong! My best to you.