Insomnia

[Garyswife]

Hello, my husband is stage 4 extensive bone meds , adrenals and now liver. He’s had all treatments-Lupron, Provenge, both chemos, zytiga, Xtandi, lympanza ( don’t recommend). PSA in the 1900 and climbing and now in intense pain 24/7. Complains mainly of leg pain. On fentanyl patch and Norco. We are having hospice meeting next week. My question is how many of you suffer with insomnia? My husband lays down normally within 30 minutes he wants back up,sometimes drenched in sweat, dressed and pacing around. Then back in bed after 30 minutes he wants back up. This goes on all night. Palliative doc put him on olanzipine to try and help. Nothing working yet. Any suggestions?

[AlanMeyer]

I'm sorry to hear about Gary's condition. I have no expertise in any of this but the first thought that comes to me is that there are several possible causes of the insomnia, and each might be addressed in a different way.

If the problem is pain, it may be a good idea to try to find a pain specialist if Gary doesn't already have one. I have been told by others that they have gotten relief from doctors who specialize in pain when the generalists and oncologists didn't have quite the same specific expertise.

Another possibility, of course, is anxiety. That's a very different kind of problem. Sometimes a counselor can help. If Gary is religious, a minister, priest or rabbi may be useful to him. But others can also help such as people who understand meditation, hospital social workers, and just good psychological therapists. Some counselors are very much better than others and it would be wonderful if you can find one that Gary can really connect with.

I find the best help for anxiety is taking the focus away from myself - reading, music, talking to other people and helping others can all be good at reducing anxiety. Having a goal for the last period of one's life can be helpful. When I am at Gary's stage I hope to be able to write down or record information about my life and about the family that will be of interest to my children and grandchildren. I think the information would be of value to them and it would be of value to me to know that my memories are not lost with me. Maybe I'll go through old photographs and write information about them on the backs, or scan them and attach texts. I know that many people in those photos will be unknown to later generations and the photos will be more interesting if they're identified. (If writing on the back of a photo, be sure to use pencil, not pen, so that ink won't bleed through.)

I would like Gary to know that people on this list are thinking of him as they face similar problems of their own, and that all of us wish him well.

Alan

[gusgold]

Xtandi causes insomnia and gabapentin works for me

[Beermaker in reply to gusgold]

I take 3 Xtandi a night, and yes, it causes insomnia and I lose 2 more hours on top of the 2 I lost to ADT. My MO asked if it was worth it, and we got side tracked when I asked my wife what she thought. (I am basically on Trelstar and Xtandi with supplements.) Unfortunately for be gabapentin messes up my mind pretty badly and my wife pretty much demanded I not use it again for nerve pains that I get.

I agree with what Nalakrats and Alan said. The counseling, or even a visiting hospice nurse (my sister does that) would likely be useful. I live in FL where medical marijuana recently became available and switched to it from street pot. It works pretty well, though not cheap. The street stuff also worked but my wife wanted me to be legal so I use the dispensary stuff now. Try it if you can. It works with anxiety, insomnia, and pain for sure. There are a lot of stories of people who started using it, and actually were able to stop using opiods.

Good luck with whatever route you use. God bless.

Marshall

[vandy69]

Good Friday Morning Garyswife,

Have been in this battle for almost six years (please see bio for complete treatment history).

My Med Onc prescribed Xanax to assist with sleep (not for depression or anxiety). I take one before bed and sleep soundly--until I have to head to the toilet! Generic is cheap.

Best wishes. Never Give In.

Mark, Atlanta

[bb66hotflash]

I take Ambien, 10 mg, Zolpidem daily. I find I can usually fall asleep in 30-60 minutes. But you have to relax and clear your mind.

[ontheroad589]

I too am stage 4, with extensive mets and trouble sleeping. Before I got diagnosed, I was fast asleep by 11 every night - now I am lucky to get asleep by 2 or 3 am, and after falling asleep I am up every hour peeing or just wandering around, also drenched in sweat. I am taking 10mg ambien, but they don't really help. Dr is trying me on Gabapentin next week - I will let you know what the outcome is.

[Hidden in reply to ontheroad589]

I call it The all night voyage to the bathroom.. Id like to see myself on time lapse. I’m sure I’m maniacal . Between the frying in the pan before and after each trip at times not much sleep. Then napping to make up for it during the day. We are exactly the same in this respect... welcome to the ranch..

[Hidden]

I take 20mg. Melatonin and a4..5 gm low dose naltrexone at bedtime also marijuana oil promotes appetite and sleep. Im praying that good sleep comes your way soon and that The pain goes away. That’s no good. I am sorry for anyone to see thier husband or father go thru this hell. Hope you have a better weekend.. God bless you both.....

[Gary94]

I take a 20mg melatonin capsule, a Benadryl and a capsule of CBD oil. It usually works but lately nothing works right after a chemo treatment. I also have a remote controlled fan pointed at me when needed at night. Usually wake up every two hours with a hot flash.

[Tjc1]

I take a .05 adivan and a seraquil. Ambian loses its umph in a short amount of time. Pretty dangerous as far as getting hook on them. Soon i was taking 1and ahalf then 2 for them to work.

Im asleep in 15 mi utes and dont wake up but once per night to pee.

Thomas

[MontyB]

Hello Garyswife,

I will try to contact you via messenger.

Take Care, Monty

[shannapetr]

Have you heard of PRRT therapy? I just learned about it. It has been in Europe for 10 years, but not here. It is coming. Very expensive, but promising!

prrtinfo.org

[MelaniePaul]

Paul and I are so sorry to hear this. And we are sending good wishes and prayers your way.

Paul too experiences night sweats on a regular basis. We were told it is or can be a sign of tumor growth. But of course it could also be anxiety or a side-effect of some of the meds he has been taking.