I sleep 18-23 hrs a day help!

Piptra · August 2021

A full year and 17months after the end of my chemo, I am still sleeping around the clock (no pain just tired) I'm not anemic, white blood cell count (and red) is good, thyroid is good. I know this is bad but it is abnormal? I had double mastectomy in November 2019 with immediate silicone implants (no stretchers). Then did 6 rounds of a 3 cocktail chemo for stage 2B Aggressive 3 gland invasive Lobular Breast Cancer. NO Metastasis. My Oncologist ran an abdomen and chest MRI/contrasting die CT the only thing that came back is that I have kidney stones to look forward to LOL!!!! I'm not depressed, I've been under the care of a Psychiatrist for many years and we have changed and adjusted my anti-depressions and living with depression for as long as I have I promise you I know when I'm depressed and I'm in a very good mental condition. I want to be out doing things but this sleeping is so bad that I had to take a short term leave from my office in April as I'm a top executive for a top 10 fortune 500 bank and I was literally falling asleep on conf. calls (thank goodness never caught). At first my Oncologist and Psychiatrist both loaded me up with Adderall I was taking about 80MG a day and it might as well been like a sugar pill I was jittery and my hands shook, heart beat fast but it did nothing to stop me from sleeping the 18+ daily hours. I've stopped taking those. The last conclusion my Oncologist drew before he semi washed his hands of me was to say that sometimes the tired effects of chemo can last longer with some than others and I just must be one of those others.

Has anybody experienced anything similar?????? We are desperate!

Side note: We found an obscure article online mayo clinic about a study Phoenix AZ is working on with people who 2% of the population have a condition called hypersomnia or long sleeping. But the weird thing is it's usually a childhood onset and it's not made any correlation to cancer. But the good news I reached out to them and they will accept me in their study which starts October 11, 2021. We live in Plano TX and this is of course not covered under insurance, and my pay has been cut to 70% of what it was and wouldn't you know we just purchased a second vacation home and then hubby lost his job. But God is good we have lots of equity in home #2 and can rent out as VRBO second vacation home to make Mayo Phoenix work!

Love and God Bless any help, suggestions, feedback is welcome (PS. all advance apologies for my long run on sentences and, any any/all grammar errors) LOL.

Tracy P.

GlobalGal · August 2021

Hello, Tracy.

I sleep an unusual amount too. 🥱😴.

I have been using a Cpap machine for sleep apnea for several months, but it has done nothing for my daytime sleepiness—it may even make things worse as I wrestle all night long with a full face mask and long winding plastic hose. I feel like I have a live, angry, hissing octopus attached to my face 🐙!

As soon as I eat lunch, I pass out —and, am out for hours, if not most of the afternoon.

I have had low Vitamin D and B-12, but now take supplements.

I never had chemo, so I can’t blame that.

My thyroid was removed due to papillary thyroid cancer and I take daily Synthroid.

Please keep us posted on your Mayo hypersomnia trial.

Sleepy all the time.

Global Gal

moth · August 2021

Hi Tracy, have they checked your B12 levels? Other than that I'd consider a brain MRI or CT if you haven't had one.

That sounds very frustrating for you! You don't want to be snoozing all your days away.

I hope you find a solution

Anonymous · August 2021

Have you had a sleep study done? Many years ago I was always tired and thought it was due to having young kids. Turned out I had sleep apnea from having lax joints. My oxygen saturation rate would drop momentarily into the 30s. I had surgery that fixed the sleep apnea.

I sleep 18-23 hrs a day help!

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