Husband Sleeps 18 hrs a day with Temador. Is this totally expected or is part of this depresson?

steve68 said:

sleeping/temodar/radiation
Hi peacefulheart,

It's great that your husband had successful surgery and a good iniitial MRI. Sounds like a good foundation to build on.

I don't know the answer to your question regarding the cause of the sleepiness, but I can share my experience which was pretty similar. I am 45 and had whole brain radiation from end of november through december 2009, together with temoda a similar regimen to your husband. (I was not a surgery candidate). The doctors and literature will warn you of "fatigue" as a side effect or radiation and temodar. Although this was accurate, I found that a more accurate description would have been "sleepy," "groggy," "deadened" and "depressed/joyless." It was as if I lost my appetite for food and everything else. My mind was very quiet, and I slept a lot (but not nearly as much as your husband). Now about 2 weeks after end of radiation I am beginning to "wake up" and it is an enormous relief. I share your fear that the treatment can deaden you to a point that you wonder if it makes sense. In my case, it just took time. I hope the same will be true for your husband.

I think everyone struggles with the difficulty of separating from each other the physical effects of the illness, the psychological effects of the illness, and the affects of the treatment. It's just hard to tell what is causing what. I have come around to the point of view that you can't always distinguish one from the other. All the factors are real, and in play and you can take steps to address them all. There may be multiple causes at work at one time. So consider attacking on all fronts. Exercise, therapy, writing, cultivating a sense of purpose can all be helpful for depression. I'd get some input from the neuro-oncologist about the sleepiness -- they've likely seen a lot of it and may be able to adjust medications to help.

Good luck to you.

steve68 said:

sleeping/temodar/radiation
Hi peacefulheart,

It's great that your husband had successful surgery and a good iniitial MRI. Sounds like a good foundation to build on.

I don't know the answer to your question regarding the cause of the sleepiness, but I can share my experience which was pretty similar. I am 45 and had whole brain radiation from end of november through december 2009, together with temoda a similar regimen to your husband. (I was not a surgery candidate). The doctors and literature will warn you of "fatigue" as a side effect or radiation and temodar. Although this was accurate, I found that a more accurate description would have been "sleepy," "groggy," "deadened" and "depressed/joyless." It was as if I lost my appetite for food and everything else. My mind was very quiet, and I slept a lot (but not nearly as much as your husband). Now about 2 weeks after end of radiation I am beginning to "wake up" and it is an enormous relief. I share your fear that the treatment can deaden you to a point that you wonder if it makes sense. In my case, it just took time. I hope the same will be true for your husband.

I think everyone struggles with the difficulty of separating from each other the physical effects of the illness, the psychological effects of the illness, and the affects of the treatment. It's just hard to tell what is causing what. I have come around to the point of view that you can't always distinguish one from the other. All the factors are real, and in play and you can take steps to address them all. There may be multiple causes at work at one time. So consider attacking on all fronts. Exercise, therapy, writing, cultivating a sense of purpose can all be helpful for depression. I'd get some input from the neuro-oncologist about the sleepiness -- they've likely seen a lot of it and may be able to adjust medications to help.

Good luck to you.

dsharlee said:

Sleeping all day on temodar
I'm a 57 y/o female and completed surgery for GBM (L parietal lobe area) in July 09, radiation and temodar in Sept-Oct 09. Then I started the same protocols that most GBM patients follow - higher doses of temodar for 5 days, 23 days off, etc. With the highest dose starting on the 2nd cycle, I was sleeping most of the day and night - and groggy, foggy, as others describe, little or no appetite. I was also miserable and also questioned whether to continue this therapy, which at best will most likely buy me another year or two.

I spoke with my neuro-oncologist (at Johns Hopkins, one of the best brain tumor centers ever, in my opinion). She completely understood my feelings about quality of life vs. strict adherence to the standard protocol, and she has slowed down my cycles just a bit, and lessened the doses. Much improvement! Will it make a difference in the effectiveness of the treatment? Maybe, maybe not - but in my opinion, it's worth it. I can now travel a bit without feeling sick all the time.

Why don't you talk to your husband's oncologist about this? Sleeping all day would make anyone depressed.

peacefulheart said:

Chemo Fatigue
It sounds like both our husbands are at the same place right now with treatment. We see his oncologist on Monday to get the results from his recent MRI. His MRIs are every 2 months. What about your husband's schedule? I will ask on this next visit about how long this 5 day cycle will continue. I imagine it will depend on what is going on with the cancer.

I admire you and your husband's energy. I did get my husband out last weekend to spend time with friends and tomorrow we are going to a Super Bowl party. I'm seeing signs of hope! I'll be anxious to hear what the resuts are on the 18th. Please let us know. I pray it is good news.

Cathy