One patient with glioblastoma still alive nine years later
by jmcgehee on Wed Jun 13, 2012 09:49 AM
I am an active 71 Year old male diagnosed with EC in March 2012. I have just finished my 7thweekly chemo session (carboplatin, taxol and 5FU in a 3 hour session followed by a portable pump for another 24 hours). Besides the expected fatigue, I really only have two side effects: low red cell count, which is being treated, and sleep deprivation. I only sleep an average of 4 hours at a time then catnap off and all day. Since one of the Oncologist’s recommendations is to stay well hydrated, I also have to get up and urinate at least once during my sleep cycle, which doesn’t help.
I’ve tried all the milder sleep aids from melatonin up through Ambian. I am afraid to go any stronger than Ambian. Anybody else have this problem? What worked for you?
by wenthewyntr on Wed Jun 13, 2012 10:04 AM
Hi JMC. Sounds like you are pretty normal. You have to figure that you aren't burning much energy, so sleep isn't that needed. Tiredness is unavoidable from chemo. I say, give in. Just get up and cook something, read something. Play solitaire on the computer. Don't worry about your sleep schedule. There is no normal! Collectively throughout the day you are probably getting enough hours of sleep. If it bothers you, your doc should help!
by rickjenn on Wed Jun 13, 2012 02:30 PM
When I was on chemo (5-FU only), I didn't have sleep problems, but one of the anti-nausea meds we tried was Lorazepam, which also is a anti-anxiety drug that makes you sleepy. During the period I was taking it, I slept really well without any carry-over to the morning. It may be worth a try. Best wishes, Rick
by wyldeangel on Thu Jun 14, 2012 11:44 AM
Let me begin by saying how brave you are to share your story and also to ask for help; it's difficult for most adults to do, especially men, as they are expected to be strong and resourceful at all the times. I am a cancer survivor (18 years this September) and my mom (a 16 year survivor of colon/bladder cancer) is now starting chemotherapy for small cell cancer of the lung with mets to her liver. She is 77 years old, and although scc with mets is incurable, her oncologist has told her that chemotherapy and radiation has the potential of extending her life considerably.
Sleep problems are not unheard of during chemotherapy; my mom's oncologist gave her a prescription for Lorazepam and that has helped her considerably. I was prescribed Trazodone (antidepressant that makes you sleepy, keeps you asleep and is non-addictive) and I still take it at night for sleep. I have been on the same dose now for 18 years and it works like a charm. It also helped (is helping) with the depression and anxiety of a cancer diagnosis, treatment and the fear of falling out of remission that can occur.
As for the hydration issue; I did (and still do) most of my "drinking" (for hydration, not intoxication!) during the daylight hours, and ceased (cease) consuming large amounts of liquid after dinner. I also have only one caffeinated beverage per day and that's very early in the morning. I take my Trazodone with only 3/4 cup of water (to wash it down well) 1 hour before bedtime and then visit the bathroom right before retiring to bed. This seemed (seems) to prevent a visit to the toilet in the wee hours of the morning, and makes for an uninterrupted period of sleep.
Everyone and their physiologic response to chemotherapy is so very different; I hope you might find some enlightenment and aid from my own routine...
I wish you much courage, strength and joy as you travel through your cancer journey...
by jmcgehee on Thu Jun 14, 2012 03:08 PM
I really appreciate everybody's advice. I'm going to talk more about the issue with my Oncologist when I do my Monday chemo. I seem to have this phobia about taking drugs. At this point that's pretty stupid, I know.
by jagerwin on Thu Jun 14, 2012 09:46 PM
I had only 3 rounds of cisplatin for a stage 4 tonsil/lymph node cancer, but..... I haven't slept the same since. I also had two open heart surgeries, one 2 years before, and the other one year after, the cancer treatment. So lots of anesthesia to boot. But, like others have mentioned, I also use Lorazepam from time to time. I have to take Neurontin for neuropathy, which I take at night only b/c it makes me a little sleepy as well. The two together work. I sometimes use generic ambien (zolpidem) when I need to fall asleep quickly. BUt I don't like how I sleep, even though I split pills (which is why I use the generic, so I can use just 2.5mg at a time). I find I tend to skip the dream state with the zolpidem, whereas with the Lorazepam, I do dream, so I feel better the next day. It ain't perfect, but after 3 years, I've stopped looking for sleep perfection! The odd thing is, I seem to do basically ok, even though I don't sleep much. I'm still fatigued all the time, and I do take rests during the day, but my sleep pattern is rather wonky; sometimes very short nights, sometimes 10 hours.
I hope you find some relief. And, as also pointed out, each of us responds a little differently, so indeed, "go with it".
by mtnbiker on Sun Jun 17, 2012 07:29 PM
I had breast cancer and also did chemo..You need to sleep so your body can recover and stay strong...my opinion is take what you need to sleep Ambian worked for me ..the only way your body recovers is sleeping....
PS if you need to do radiation you will sleep alot...
hugs to you,
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