Let's Talk about Sleep!

Dear Philly,

 I had similar sleep patterns during my first year on Ibrance. At the time I chalked it up to depression and the long Wisconsin winter. In retrospect I think it was just what my body needed as I was NEAD for several years afterward. Being as how it is spring and you don't sound depressed, I think/hope your body is insisting on what it needs just now and I wouldn't worry about it. For me it only lasted for a matter of months and I was back to "normal". ( still wake up many times during the night.)

With love from Wisco,

Jo

Going to bed at night is an ordeal. I rarely get 2 hours straight sleep, mainly due to hot flashes. I throw the covers offpull them back on every 45 mins or so. Im often awake for half an hour or so at a time. 3 weeks ago my onc said I should stop Tamoxifen, have 3 weeks wash out then start femara. I expected the flashes to ease, but they haven’t. I started femara today. She gave me a script for I box of temaz and said I just needed to get back into a good sleep pattern and I’d be right - I could have them 2-3 consecutive nights a week. Well on the nights I’ve had them I’m still waking almost as frequently with hot flashes, but I must say I go back to sleep almost immediately and although I NEVER feel refreshed in the morning, I actually feel calm, which is good. The nights I don’t take them r still hopeless. Im dreading the end of the box because she has no intention of another script. I’m jealous of the people who sleep Orr prescribed ongoing sedation. I’ve tried going to bed earlier but it just makes the night longer and is unbearable!

Bella, If hot flashes are what's wrecking your sleep, maybe you get an rx to help with flashes. I started taking venlafaxine (Effexor) shortly after starting Faslodex and it helped a lot. There are other drugs that help with hot flashes too, ask your mo.

IChangedMyName, it could be the Lexapro or the combo of Lexapro with melatonin causing your issues. I had "somnolence" (ie extreme sleepiness) when I tried Lexapro for hot flashes years ago and had to get off it for that reason. I also take melatonin and the combo may have made that issue worse. They both impact serotonin levels. I never had the option of sleeping 12 hours with work but probably could have easily done that every night.

Jensgotthis, how did you move your bed time down from 11-12 to 9-930? I know that would improve the quality of my life drastically but I have been a night owl from birth and I struggle with that and am having a tough time making changes despite efforts. It brings me a great deal of anxiety and guilt. My supposed bedtime is 11 to awake at 7am but I rarely make it to bed at that time. I consider anything 12am or earlier a success for me personally and even that is rare. I need time to do a few things after my DH and son go to bed. Work plays a part too because I know I only have a few hours at night to get done whatever personal matters I need to get done until the next night after my son is asleep.

JFL, I do miss those precious hours after my son has gone to sleep and I can get things done (like dishes) or have some chill time. I don't get home from work/picking him up from aftercare until 6:30 or 7. I've had to be okay with slacking off of chores a bit but feel okay with it as I know they'll still get done. To make the actual transition, what I have found helpful is to listen to an audio book for about ten min once I'm ready for sleep. I have a few things I use once my eyes are closed that range from a relaxation exercise (my toes are heavy and warm etc) or if my mind is spinning I do (really) long division problem in my head. On the rare nights I don't fall asleep quickly, then I read in bed. I have a kindle and use the nightshade setting and sometimes I'll fall asleep mid sentence. (Kindle has fallen on my face only a couple of times 🤦♀️

I think my reaction to Lexapro is not the most common although somnolence is listed as a side effect on the label and is a known reaction in some people. More technically, serotonin is the precursor to melatonin. Most people with low melatonin levels have a serotonin deficiency. When serotonin levels are increased, one’s body may as a result produce more melatonin. The higher levels of melatonin plus the melatonin supplement combined may be too much in some people and require a melatonin dose adjustment

High Dose Melatonin Therapy - An Ideal Adjuvant Anti-Cancer Therapy

https://www.youtube.com/watch?v=Roh4lQXneQg&list=PLIQ39sMYH78ur5o-FDFfd4aNJo36NFWAV&index=2&t=0s

I agree, just roll with the idea you need extra sleep right now! It is true, never will you have the opportunity to sleep guilt-free for 12 hours a night. Sounds amazing right now thinking about it. I started taking melatonin years ago as I have had night owl insomnia my whole life. When I heard it may help with breast cancer, either by reducing estrogen or through some other mechanism, I jumped up to a relatively high dose and have remained there - 5mg. Were it not for the potential cancer benefit, I would be taking 1 - 3 mg max.

This is so interesting. I recall reading about an MBC trial where patients took 10mg but haven't heard of more than that. I am curious to learn more about this . . . . Did you notice a difference in your sleep, feel groggy or have other side effects when your first started that amount? Did you phase into 20mg? What time do you take the melatonin?

I'm so glad you brought this topic up, IchangedMyName! I have been wondering about the same thing for the last week or so... I get into bed at about 10pm, fall asleep by 10h30, and unless a kid or a dog disturbs my sleeping I open my eyes at about 7am, but will sleep until 8h30 (I homeschool, so our days are later and slower anyways), which means I sleep about ten hours a night. Before cancer and treatments I would average about 7-8 hours, so it seems my body definitely needs more rest, even though I don't have active cancer at the moment. I think listen to your body, and enjoy the goodness of sleep!

I take 20mg of melatonin every night too. I think the brand is Pure Encasulations. I’ve taken it for the past 5 plus years.

I’ve always had insomnia but now it is worse with hot flashes and coughing.

It used to knock me out cold taking it an hour before bed but now I’m use to it but I still take it for the anti cancer benefits.

I take 25mg of ttazodone with it to help with hot flashes.

I have a prescription for lexapro but I’m too afraid of additional side effects so I haven’t take it.

I go to bed early but wake up through out the night. My first awakening is at 1 am. Then I’m done sleeping by 4 am. I feel so tired during the day but just drink coffee. Most days I can manage however some days on Ibrance/letrozole I’m not able to get by with coffee and I struggle with my day and functioning.

Novagirl because I sleep so poorly I try to stay up as late as possible as I cannot bear to be awake from 4 am or so. My theory goes that the earlier I go to bed the earlier I’ll wake up - I’d rather be awake from 6am than 4am! But some mornings 4am is still it, I just watch my iPad until a decent hour to arise. I’m not a coffee drinker so I drink a LOT of tea before midday trying to become more alert, but alas it doesn’t work. I switch to herbal tea after midday, but this doesn’t help sleep either! I’d love to have a sharp brain again ...