Temodar with Radiation Question

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Temodar with Radiation Question

by khiggins on Wed Apr 15, 2015 08:03 PM

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My husband was diagnosed 4 years ago with a grade 2 Oligloastrocytoma and underwent radiation only.  Then in Dec. of 2014 we discovered growth on a follow-up MRI.  After surgery in Feb. of this year, it was determined that his tumor is now a grade 4 GBM.  They recommended radation (again) and a daily dose of Temodar, which is 1/3rd of the regular dose.  We just got the Temodar (long story) on day 12 of radiation.  My husband is scared to death to take the Temodar because of it's side effects (and because he's spent the last 2 years of his life eliminating all processed garbage in his diet).  The doctors say that there's little to no side effects when taking such a small dose.  But I want a first hand experience.  If you had daily Temodar during your radiation therapy, what was your experience?  How did it affect you?  How was your quality of life?  Any shared experience, good or bad, is much appreciated.  Thank you.

RE: Temodar with Radiation Question

by wordslee on Thu Apr 16, 2015 08:18 PM

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On Apr 15, 2015 8:03 PM khiggins wrote:

My husband was diagnosed 4 years ago with a grade 2 Oligloastrocytoma and underwent radiation only.  Then in Dec. of 2014 we discovered growth on a follow-up MRI.  After surgery in Feb. of this year, it was determined that his tumor is now a grade 4 GBM.  They recommended radation (again) and a daily dose of Temodar, which is 1/3rd of the regular dose.  We just got the Temodar (long story) on day 12 of radiation.  My husband is scared to death to take the Temodar because of it's side effects (and because he's spent the last 2 years of his life eliminating all processed garbage in his diet).  The doctors say that there's little to no side effects when taking such a small dose.  But I want a first hand experience.  If you had daily Temodar during your radiation therapy, what was your experience?  How did it affect you?  How was your quality of life?  Any shared experience, good or bad, is much appreciated.  Thank you.

Hi, I am sorry to hear that yours is under  the same torture as my mother, she is having Temodar though, I am worried becasue she is already about 70 years old. the doc just gave her sth to reduce her feeling of vomiting, but sorry I am not very sure of the name because I am not with her now...sorry also that I could not even be a devoted daughter. But i think you can just ask your doc  to do sth as the main difficult thing for it might have sth to do with this aspect.

or, at least, I just want to show my support to get your message seen by people who so happen to be around here!

The best,

Wordslee

RE: Temodar with Radiation Question

by Cynthialynn on Sat Apr 18, 2015 05:29 AM

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I was diagnosed with stage 3 Oligoastrocytoma in Sept 2013. I had surgery, 6 1/2 wks of radiation, and 1 year of chemo. Taking chemo for one year is a breeze compared to recovering from surgery (in my situation). Chemo was everyday during radiation and changed to one week of every month after that. Chemo made me feel slightly tired during radiation but not too much of a big deal. Chemo after radiation didn't have me feeling the best on one week of every month but I still went to work, still exercised, and ate decent meals. The main issues with chemo, for me, were bathroom and nausea. But those are totally helped through proper meds. I have been off chemo for almost one year now and my life is TOTALLY back to normal :)

RE: Temodar with Radiation Question

by raycatcher on Sat Apr 18, 2015 11:44 AM

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On Apr 15, 2015 8:03 PM khiggins wrote:

My husband was diagnosed 4 years ago with a grade 2 Oligloastrocytoma and underwent radiation only.  Then in Dec. of 2014 we discovered growth on a follow-up MRI.  After surgery in Feb. of this year, it was determined that his tumor is now a grade 4 GBM.  They recommended radation (again) and a daily dose of Temodar, which is 1/3rd of the regular dose.  We just got the Temodar (long story) on day 12 of radiation.  My husband is scared to death to take the Temodar because of it's side effects (and because he's spent the last 2 years of his life eliminating all processed garbage in his diet).  The doctors say that there's little to no side effects when taking such a small dose.  But I want a first hand experience.  If you had daily Temodar during your radiation therapy, what was your experience?  How did it affect you?  How was your quality of life?  Any shared experience, good or bad, is much appreciated.  Thank you.

My Husband just finished his Temdor/Radiation a week and a half ago. Surgery GMBgr4 1/15...(previous low grade astrocytoma 4/13....just watched). He did fairly well..lots of fatigue. Really not many side effects. His resistance was down and got a cold that had him coughing for 3+ weeks and stayed on the couch most of the day.He is bouncing back now as the weather is finally getting nicer. So I guess he was lucky not to have too many side effects. We go for his followup MRI in 3 weeks and I am praying it looks good. He will be doing temodor 5 days a month as far as we know. Good luck to you and your Husband.

RE: Temodar with Radiation Question

by JenniferONeal on Sat Apr 18, 2015 12:36 PM

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Our experience with the daily metronomic dose of Temodar was night and day to the 5 days/month dose.  When my husband went on that larger dose following radiation, within a couple of days he was lying on the coach barely able to do anything, completely exhausted, only started feeling better just before he needed to start taking it again.  We were switched to Avastin.  In retrospect, it may have been radiation damage that he was dealing with--his primary tumor didn't return until a year and a half later (most of which time he was on Avastin).  After his second crainiotomy he took daily Temodar and was also nervous given his prior experience. This time it was so much easier. He had to take Kytril for nausea (we tried Compazine and that didn't do the trick), ate a high fiber diet with lots of broccoli and fresh fruit, tried to walk whenever he could, and drank plenty of water. He was really fine with all of that and went to work as normal, only complaining from time to time about mild fatigue. A secondary inoperable tumor appeared as time went on and that did not respond to anything. But during the 28 months he lived with GBM, he was remarkably well and able to continue to do the things he loved, all up until the last few months. All the best to you on this road--Blessings, Jennifer

RE: Temodar with Radiation Question

by trudig on Sat Apr 18, 2015 08:10 PM

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In 1/15 I was diagnosed with GBM, but final pathology determined to be anaplastic oligodendroglioma III.  I just did the standard treatment of six weeks of radiation and Temodar.  The initial Temodar regimen was 140 mg, 42 days straight.  I had no issues.  I'm in my "off" month and will soon have another MRI followed by six 5/23 cycles of Temodar at about 350 mg.

RE: Temodar with Radiation Question

by DianneMF on Sat Apr 18, 2015 11:07 PM

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My 24 yr old daughter was on the similar radiation/chemo regime at UPenn for 6.5 weeks She did fine on this during that time. Her side effects consisted of fatigue, severe constipation & some nausea. After all of this, it was her overall blood counts that where most concerning & prevented her from the adjuvant Temodar for many weeks. Please be vigilant with this & monitor carefully with your neuro oncologist

RE: Temodar with Radiation Question

by wordslee on Sun Apr 19, 2015 05:29 AM

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On Apr 18, 2015 5:29 AM Cynthialynn wrote:

I was diagnosed with stage 3 Oligoastrocytoma in Sept 2013. I had surgery, 6 1/2 wks of radiation, and 1 year of chemo. Taking chemo for one year is a breeze compared to recovering from surgery (in my situation). Chemo was everyday during radiation and changed to one week of every month after that. Chemo made me feel slightly tired during radiation but not too much of a big deal. Chemo after radiation didn't have me feeling the best on one week of every month but I still went to work, still exercised, and ate decent meals. The main issues with chemo, for me, were bathroom and nausea. But those are totally helped through proper meds. I have been off chemo for almost one year now and my life is TOTALLY back to normal :)

congratulations!

and thank you!

RE: Temodar with Radiation Question

by SusieSeminole on Sun Apr 19, 2015 06:55 PM

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On Apr 18, 2015 5:29 AM Cynthialynn wrote:

I was diagnosed with stage 3 Oligoastrocytoma in Sept 2013. I had surgery, 6 1/2 wks of radiation, and 1 year of chemo. Taking chemo for one year is a breeze compared to recovering from surgery (in my situation). Chemo was everyday during radiation and changed to one week of every month after that. Chemo made me feel slightly tired during radiation but not too much of a big deal. Chemo after radiation didn't have me feeling the best on one week of every month but I still went to work, still exercised, and ate decent meals. The main issues with chemo, for me, were bathroom and nausea. But those are totally helped through proper meds. I have been off chemo for almost one year now and my life is TOTALLY back to normal :)
My husband had the surgery for right frontal lobe GBM April 14th. He has barely wanted to get out of bed since then. Is this normal? He only walks from the bedroom to the family room a couple times a day. And just wants to sleep the rest of the time. I am afraid he is getting weaker by the day. Any suggestions on what I should do?

RE: Temodar with Radiation Question

by DianneMF on Sun Apr 19, 2015 07:02 PM

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I think honestly it sounds pretty normal; he is recovering from a type of surgery that is very different than others. The brain & body need time to heal. Call your neurosurgeon if you are worried. Your husband is probably on painkillers anti seizure meds as well as steroids & they all can contribute to fatigue. Be patient. Let him rest. Try & have some healthy food choices like fruit or veggie smoothies available & a calm quiet environment available to him so he can feel safe & comfortable
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