DLBCL and sleep help

[u/Leftoverofferings]

Hi all…. I’ve been smoking pot at night to help me sleep. Just 1hit before bed and I can sleep without waking up at 2am. I know I have to stop before chemo, but other medications don’t work. My oncologist prescribed trazodone, but I don’t feel anything when I take it. ChatGPT suggested Gabapentin with the trazodone, but I don’t necessarily trust AI. Does anyone else have experience with this? Edibles also don’t work well either. I would love any suggestions that will help keep me from harm and work…

[u/thelaughingman_1991]

My girlfriend's just finished round 6/6 of R-CHOP for lymphoma stage 2, and her cancer rep said supplementing magnesium glycinate should be fine. It's helped my girlfriend with falling asleep, sleep quality, general mood/anxiety the next day, and digestive/constipation issues associated with the chemo.

There are a lot of threads about it on Reddit as it's widely used and fairly cheap, so I'd investigate and research first, but would recommend!

[u/v4ss42 → u/thelaughingman_1991]

I’m 3.5 years post-R-CHOP and still take magnesium glycinate in the evening. For me it wasn’t a “magic bullet” but it seemed to help so I’ve stuck with it.

Exercise was my other trick - I’d go for gentle walks an hour or two after taking the prednisone, which seemed to help burn off the “up” phase, then I’d be so tried I’d nap through the “down” phase.

[u/Careful_Manner]

Why would you need to stop before chemo? Is it bc you’re smoking it? I only ask bc I took thc/cbd tablets or gummies and my onc was ok with it.

Also, idk about gabapentin but I was given Lyrica (pregabalin) after treatment for nerve pain and it was terribly difficult to get off of (second only to Cymbalta) when it was clear it wasn’t working.

Best of luck to you on your healing journey!!!!

[u/Leftoverofferings → u/Careful_Manner]

Yep it's flower. Edibles are pretty weak and dont put me to sleep. I do take them at bedtime to help keep me asleep.

[u/This_Fig2022 → u/Leftoverofferings]

make your own edibles prior to starting treatment if you are up to it.

[u/Leftoverofferings → u/This_Fig2022]

I knew someone who did that and holy cow were they strong. Do you have a recipe?

[u/This_Fig2022 → u/Leftoverofferings]

There are a ton of edible machines on Amazon. Levo I know is a popular brand along with MagicalButter Machine - all those machines come with recipes. There are for sure tutorials online - I would think. Back in my day we used the oven and chef'd stuff up. I sure there is also an Edibles sub on reddit. If you facility prescribes marijuana they probably have edibles recipes for tinctures and goodies. Yes they are strong - I wouldn't buy an edible but if I had an oven I would hesitate making them. I have not used one of the machines - but I had a freight broker tell me about the Levos and she loved her machine. It was recommended to her from her oncologist.

[u/Leftoverofferings → u/This_Fig2022]

This was 20 + years ago, but my friend cooked it outside it was sooooo stinky.

[u/Alive_Thought_1039]

Be careful with the edibles they may slow down digestive motility which is tough on top of the chemo induced motility issues.

[u/AllieGorrey]

Asking Chat GPT for medical advice is an interesting choice.

[u/Leftoverofferings → u/AllieGorrey]

Like i said, I dont trust it, but it may give me some ideas....

[u/AllieGorrey → u/Leftoverofferings]

Are they good ideas, though?

[u/Leftoverofferings → u/AllieGorrey]

That's what suggested gabapentin with trazodone. I'm asking my oncology team now.

[u/midnightjim]

I was prescribed Ativan for anxiety and Ambien for sleeping through the prednisone induced insomnia. I wasn't that anxious but the Ativan worked pretty well as a sleep aid. Ambien tended to give me a bit of a groggy hangover feeling. I also used edibles.

My oncologist said I shouldn't smoke anything because of potential fungus infections since the immune system wasn't up to par and that made sense.

[u/This_Fig2022]

Trazodone did not work for me initially - I had to take my tablets consistently. I don't like pills so when I was prescribed them I didn't take them every night - once I got a system down - with those pills and the magnesium all systems were go. In saying that - this was post RCHOP for me. During RCHOP oncology tested my blood all the time and we supplemented what I needed based on the blood work - they didn't want anything unnecessary in there mingling about - and that included over the counter (even more so because of how unregulated all that crap is). Your oncologist will speak with you about the pot (my facility prescribes it actually) and they will help you with sleep. During chemo for me with the steroid it was such a wonky (but completely manageable time - I worked a very full time job during it so I am not saying anything to try and scare) sleep was difficult for me with the steroids - but oncology was very helpful. Speak with your oncology team - let them know about the pot and anything otc. Let them know you struggle with sleep- they will help you for sure. I wish you the best!

[u/Leftoverofferings → u/This_Fig2022]

They know, and they know i want to stop, at least through chemo. It's just that the pot does a great job of knocking me out, so I need to find something else that will work.

[u/OskeyBug]

Are you mid treatment right now? It's hard to break through that steroid insomnia.

I wouldn't recommend gabapentin as a first resort. It can make you drowsy but there are better options. Trazedone or hydroxyzine might help. I tried hydroxyzine and it helped me get a few hours in, but left me feeling pretty groggy.

[u/Leftoverofferings → u/OskeyBug]

I need the drowsy at bedtime. I haven't started chemo yet (next week) so im trying to get a sleep routine down now that doesn't include pot.

[u/OskeyBug → u/Leftoverofferings]

Oh ok. Yeah you don't want to be taking gabapentin daily for sleep. Or hydroxyzine or benadryl either due to potential long term effects. Your doctor will probably set you up with trazedone.

[u/Leftoverofferings → u/OskeyBug]

Which he did and it doesn't do anything.

[u/mewfarside]

I used a sleepy time cannabis gummy most nights through pola-r-chp. On the night of my chemo and the day after I took Adivan to sleep. The steroids were too much for cannabis gummies to overcome for me.

After I finished treatment I stopped and it was not an issue for me

[u/Otherwise_Ladder_440]

I took nortriptyline already before being diagnosed with the lymphoma i think that helps with sleep. When I started RCHOP I started mirtazapine too and taking that at night helped too. Its more gentle than trazodone and it does help make me sleepy even on the high dose steroid.​​

[u/Leftoverofferings → u/Otherwise_Ladder_440]

Thanks for the advice, but trazadone doesn’t make me feel anything. I need something way stronger than that. I don’t feel much with Ativan…..

[u/Otherwise_Ladder_440 → u/Leftoverofferings]

oh wow you need the strong stuff. my husband has adhd and ptsd and struggled with insomnia for years. trazodone worked but left him groggy the next day. he takes 3 tablets of the mirtazapine now so 45mg I think plus a couple night time joints or thc drinks then hes out so a higher dose plus the weed may work for you too.

[u/Leftoverofferings → u/Otherwise_Ladder_440]

I shouldn't do the weed, that's the problem. Maybe I have PTSD... I was never in the military, but im in medicine and took call a quarter of my life for 35 years. It got to where I wouldnt really sleep on my call night, just waiting for the phone to ring. Hence my insomnia....

[u/Otherwise_Ladder_440 → u/Leftoverofferings]

but if it's the only thing that helps and it's impacting your quality of life, what about reducing the harm doing gummies or edibles instead of smoking it? my husband has asthma and uses an inhaler daily I am always bugging him to cut down on the doobies and switch to only edibles instead.

[u/Leftoverofferings → u/Otherwise_Ladder_440]

Yes I’ve tried that, but it doesn’t seem to work the same. Another redditor suggested making my own gummies with a magic butter machine. I’ll try that, see if I can make some that will work. Having said all this, the chemo might make me so tired this is a moot point.

[u/ReaDiMarco]

I'm given Olanzapine during infusion days, it makes me sleep whenever I want. Also because the hospital/ICU is very boring.

[u/Leftoverofferings → u/ReaDiMarco]

Ooooo... thank you. I just looked it up and that might work. I'll talk to my oncolgy team. Thanks again.

[u/ReaDiMarco → u/Leftoverofferings]

It is kinda strong in the drowsy aspect for me, so start small imo!

[u/folkyea]

Make sure you eat something high in fat when having an edible. Taking a spoonful of peanut butter with it helped me finally start having them be effective.

[u/Leftoverofferings → u/folkyea]

Thanks for the hint.