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

peacefulheart
Posts: 34
Joined: Jan 2010

My 67 year old husband had brain surgery the end of Sept. The surgeon removed 90% of the tumor and my husband completed radiation and 6 weeks of daily temador Dec. 4th. His first MRI showed great results. He is now in his 2nd month of temador 5 days (420mg daily) a month and he sleeps about 18 hours a day and has no appetite. He is becoming frustrated with his current lifestyle and is wondering if the treatment is worth it. Both of us have always felt that quality of life is more important than quantity. What have been others expierences and did it get better over time? I'm a very positive person but this is starting to get a bit depressing. It is almost like my husband is already starting to slip away although the cancer is being totally maintained.

steve68's picture
steve68
Posts: 9
Joined: Jan 2010

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.

NCAA XC's picture
NCAA XC
Posts: 25
Joined: Nov 2009

I guess they determine how much temodar is to be taken by the patients body weight?
My wife weighs 130 pounds and is taking 250mg a day for 7 days and then one week on and one week off.
She had her tumor taken out and the entire left frontal lobe of her brain as well..removed.
With just 250mg, she was sick the first couple of days, then with dietary adjustments that was fixed, but not much in the way of tiredness.
The most important thing that she did was to join a gym.
She isn't real strong or anything, but after a couple of weeks, 3 days a week, she began to notice some actual definition in her arm muscles (slight as it was) it motivated her.
Of course she has an ex-coach onher all the time, getting her motivated for either walking, the gym, seting up an art studio, paying close attention to what her plans are for the future (even if I am not interested in gardening..I act like I keep notes)
think this has done much to keep the depression away from her (and me)
I get her out of the house for several hours a day and around other people...
I think that helps....
Today, we are going to the Purdue/IU dual indoor track meet.
Just for an hour or two..just to get her out.
So, if it is depression..maybe just experiment by taking him out.
Find something that flips his switch..
I could tell by the suprising, excited look in the eyes of my wife when she bench pressed just one plate on the weight machine for the first time..that I would be taking her back..
It helps, because she is helping herself and in turn it helps me as a caregiver.

KMPonder's picture
KMPonder
Posts: 102
Joined: Dec 2009

My husband has three inoperable anaplastic astrocytomas (two on brain stem and one in right cerebellum). He has had six weeks of radiation and Temodar and finished his first cycle of Temodar at 440 mg the week of Christmas. He returned to teaching elementary school last week. This was his first full completed week since August! He says he has plenty of stamina during the day and is very glad to be back to work. I have noticed, though, he is pretty tired in the evening and on the weekends, thus far. Some days he seems more tired than others.

Cognitively, I think he is pretty much where he was prior to treatment, and all of his symptoms of dizziness, imbalance and double vision remain at bay. They have kept him on a very low dose of Decadron, which doesn't bother him. Higher dosages do NOT agree with him.

I think it's important for him to be working and feel important, even if it means a quiet, restful evening at home during the workweek. He did verbalize last week he knows he won't be able to do some of the things he had done before, but I believe he can once his strength is fully regained. He also says he feels different inside, but I feel that is to be expected. He says he's not depressed. Part of me wonders if he really is at least a touch. This is his second battle with brain cancer in his life, so why wouldn't he be depressed?! I am up and down. Faith helps us hang on to hope, and the MRI post radiation/chemo showed more than a 50% shrinkage.

I just think he's going to maintain some fatigue during this winter season while on the Temodar, but I do bet when pretty spring weather rolls around he'll want to get out and about more.

dsharlee
Posts: 11
Joined: Dec 2009

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.

KMPonder's picture
KMPonder
Posts: 102
Joined: Dec 2009

Hubby finished his 2nd 5-day cycle of 440mg of Temodar last Friday. He has been fatigued to a level I have not seen yet, but he continues to teach school full-time M-F. He started feeling a tad better yesterday, so I encouraged a nearly mile walk out of him. Rainy and dreary today. His appetite remains very good and he sleeps well at night. Nurse suggests he's using most of his energy working, but he wants to work. He's my hero.

We go back to Duke for the next MRI on 2/18, so it will be interesting to see if this chemo protocol continues for a while, as I suspect it will. I hear that many times people do it for 12 months on this 5-day cycle. I am still praying for a completely clear and cancer-free MRI!

peacefulheart
Posts: 34
Joined: Jan 2010

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

KMPonder's picture
KMPonder
Posts: 102
Joined: Dec 2009

Hi Cathy. Had a super busy week, so I am just reading this. Did you get your husband's results on Monday?

I saw an improvement in my husband's energy level this week. He began winter break from teaching (a week off), so maybe that had something to do with it, too. I think, though, it's the further distance from the onset of his Temodar cycle. I will post after we return from Duke here.

Praying you had some great news to report!

Kim

peacefulheart
Posts: 34
Joined: Jan 2010

Kim,

I am happy to report that my husband's MRI showed no new growth of cancer. Big sighs of relief, until we hold our breath again in 2 months. This is his 3rd round of chemo and what an improvement over the last two 5 day cycles. He actually is only napping a couple of hours a day and his taste hasn't been affected as much this time either. Very encouraging. Please let me know how it goes at Duke.

Praying for you, Cathy

peacefulheart
Posts: 34
Joined: Jan 2010

Kim,

What was your husbands results? I hope you have something positive to report. I'm anxious to hear your news.

Cathy

bc
Posts: 3
Joined: Dec 2009

He is most likely depressed. My husband had a grade 3 astrocytoma removed Jan 7th 2009. He did the chemo and Radiation, then Temodar every day for 6 months. He was on a clinical trial. He was on Accutane for 2 1/2 months and is now back on chemo. My husband was the energizer bunny before all this and is keeping up great. Exercise was and still is a big part of his life, and he feels soo much better afterwards. There are struggles here and there but that is just a part of life even without chemo. Depression has soo many bad symptoms by itself. I would talk to your Dr. asap about gettng him on something. Don't loose hope he will get better!!!!!!!!!!!!!!!!!!!!!

Becky_searching...
Posts: 3
Joined: Feb 2010

have they reduced his steriods? sounds like brain swelling to me ... how about nausea? headaches? Any mobility problems? .. May be from treatment but have them check for swelling... hope this is helpful..

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