dealing with steroids

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Brooklyn1234
Brooklyn1234 Member Posts: 97
edited November 2019 in Chemotherapy - Before, During, and After

Hi,


I am doing weekly taxol and am five rounds in out of 12. The dexa has been causing some pretty terrible insomnia. Yesterday was a chemo day and I didn't sleep at all last night. It seems to be getting worse each week. I suspect my body is not fully clearing the steroid in a week's time, and so it's building up week by week. Yesterday they dropped me from 20 mg to 10 mg but I still had my worst night ever. I am taking melatonin and benadryl for sleep. I probably don't drink enough water in the days after chemo so I will do better on that, and I plan to try to get more exercise that produces a sweat, hoping that will help clear it out. But my oncology clinic has been reluctant to prescribe sleeping pills.

Anyone in the same boat? Any tips to share? I live in a place where cannabis is legal but so far small doses of CBD oil haven't done anything.

Thanks!

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  • CBK
    CBK Member Posts: 611
    edited October 2019

    Yup those steroids will keep you up at night!! I had a terrible problem with them. Then I crashed about day 3 to 4 I think it was! Ugh 😑

    I would think your MO could prescribe something. Mine was a fan of Ativan.

    How many mg CBD are you taking and for how long? You may need more or more time for it to build up in the system. It can take a bit to do it's job. I love CBD!!

    I truly feel for you, those steroids were tough for me!

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  • Ingerp
    Ingerp Member Posts: 2,624
    edited October 2019

    My body actually seemed to adapt to the steroid as tx went on. I did always take Zofra for a few days. Mytummy never felt bad but it does make you drowsy. I know it helped me sleep.

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  • Brooklyn1234
    Brooklyn1234 Member Posts: 97
    edited October 2019

    Thanks CBK. I'm only taking about 5 mg of CBD in gummy form. I will go up to 10 tonight and keep increasing up to 20. Will ask my MO for Ativan, that's a great idea!


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  • CBK
    CBK Member Posts: 611
    edited October 2019

    Brooklyn-

    That’s a really low dose ... so you can def. go up. Looks like you are CBD saavy!

    I take CBD raw oil form. Endoca is the brand I use. And I have also used NuLeaf. I’m still tweaking right dosing, but I’m at around 25mg a day. I thought I read somewhere suggested dosing for insomnia was 40mg, but don’t quote me on that!

    Some people suggest that the combination of CBD with Ativan could increase effects. I don’t have a problem taking both at times. And my MO is ok with it! I’ve had a very rough time with my friend Arimidex and CBD is the only thing that’s helped me! Sleep, joint pain, hot flashes, better mood, and less anxiety!

    Good luck Brooklyn. I really hope you can get some relief! And wishing you luck on finishing off your treatment soon. 🤗

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  • Brooklyn1234
    Brooklyn1234 Member Posts: 97
    edited October 2019

    I will definitely increase it. Wow, didn't even think CBD could help with hot flashes. These were bad before I started chemo, and now have become much worse. I'm really hoping I don't get my period back when this is over -- that would be a major silver lining!

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  • CBK
    CBK Member Posts: 611
    edited October 2019

    Brooklyn

    I had double whammy peri-menopausal with ovary yank and placed on Arimidex six weeks PFC. Yeouch! I was Brca +

    You are lucky you found CBD early in the game! I just found it a few months ago! It’s been such a help beyond.

    Stay in touch. And you can always DM me.


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  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited October 2019

    My oncologist regularly prescribes ativan for when you are dealing with the steroids. It really helped and it also helps with nausea.

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  • Brooklyn1234
    Brooklyn1234 Member Posts: 97
    edited October 2019

    Thanks, will do!

    (Tripled the CBD dose last night and got SEVEN unbroken hours of sleep!!)

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  • CBK
    CBK Member Posts: 611
    edited October 2019

    Brooklyn

    That’s awesome! The power of CBD.

    I’m sooooo happy you got some relief. May it continue.

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  • DogMomRunner
    DogMomRunner Member Posts: 616
    edited October 2019

    I took melatonin with the cbd and that helped

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  • kaaadams
    kaaadams Member Posts: 43
    edited November 2019

    I felt like I was sitting on a live electric wire on Dexamethasone! Had horrible insomnia too, but slept like a baby about 36 hours after the last dose. I'm taking 8mg twice daily the day before my Taxol/Cytoxan, and the pharmacist told me take the second daily dose at 2-3 pm or it'll keep me up all night. I felt like I may need psych hospitalization by day #5 of it, but that was the last day till next chemo. I get T/C every 3 weeks, so get a break. Let your MO know and prescribe something for sleep and take the Dexa in the AM and, if you need it twice daily, early afternoon. Hope that helps. Exercise too helped me get my daytime ya-yas out. Here's to sleep!

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  • Brooklyn1234
    Brooklyn1234 Member Posts: 97
    edited November 2019

    Interesting that some of us get dexa orally and some by transfusion. I wonder what the difference is. For me, it's just the one infusion before taxol, and that has been enough to destroy my sleep. I'm now on 10 mg of timed release melatonin and 1 mg CBD oil, and it isn't working, even several days out from the steroids. I'm actually starting to wonder if it isn't just the steroids. I've got hot flashes and trouble sleeping from menopause and maybe the shock and stress of the diagnosis is also playing into it......plus this week I have been sick with a sore throat and chest congestion. Overall, I am at a real low point right now.

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  • Brooklyn1234
    Brooklyn1234 Member Posts: 97
    edited November 2019

    Update: after nothing worked well enough (10 mg melatonin, benadryl, CBD oil, epsom salt soaks), I finally asked my MO for an ativan perscription. Last night i took 1 mg and I slept for an UNBROKEN 8 hours!!!!

    This is the best sleep I've had since diagnosis.

    My hesitation all this time was that there are possible links between benzos and dementia, which runs in my family. But then again, chronic lack of sleep is also linked to dementia. And a full night's sleep will help me to exercise, have the energy and gumption to prepare healthy foods, socialize more, and many other things that also fight dementia.

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