Not long before I started a grueling two months of chemotherapy, I was given a long list of potential side effects that I might experience.
I don’t recall insomnia being on the list, but it ended up being an ongoing issue during my treatment.
Looking back, I’m sure there were several reasons I had trouble sleeping, which I’ll also discuss later in this article. One of the main culprits, however, turned out to be the corticosteroid dexamethasone.
Note: this article does not contain any information related to the use of dexamethasone in patients with COVID-19.
Waking in the night
Throughout my life, I’ve experienced insomnia to varying degrees. I often have what’s sometimes called sleep onset insomnia (it takes a long time to fall asleep).
My sleep was affected differently when I underwent chemotherapy though: I would fall asleep quite easily but then wake up in the middle of the night and have difficulty going back to sleep. This a form of insomnia that’s sometimes referred to as sleep maintenance insomnia.
Awake but not tired
I would typically fall asleep around 11 p.m. and wake up between 2 a.m. and 3 a.m. on many nights.
Strangely, I would feel totally awake and not at all sleepy or groggy. I’d then stay awake for between two and four hours, before eventually drifting off again – through sheer exhaustion I suspect.
Some of the other side effects I experienced (like nausea, tinnitus and low mood) were more worrying, so I didn’t seek much advice from the medical staff about my insomnia.
On reflection, I’ve come to realize there were probably several reasons I experienced insomnia during the treatment.
When I raised it with my oncologist, he suggested it was possibly due to the standard dose of the corticosteroid they were giving me to help with nausea. I think that’s only part of the story though, and there were probably other concurrent factors affecting my sleep.
Possible explanations
1. Dexamethasone
As the medical staff suggested, I think the main contributor wasn’t just the chemo drugs (Bleomycin, Etoposide, and Cisplatin), but the corticosteroid dexamethasone.
Insomnia is a known potential side effect of dexamethasone. The websites chemocare.org And cancerresearchuk.org both list difficult sleeping as a possible side effect, for example.
A 2006 study of 60 patients found that 45% reported experiencing moderate-severe insomnia. However, the researchers noted that their study was not able to show if the dexamethasone was the direct cause of the sleep problems and other symptoms, or if it was the cancer treatment itself.
When my dose of dexamethasone was halved to see if my sleep would improve, it did seem to help. I don’t think it was a placebo effect, as they didn’t actually tell me about the change in dosage for a couple of days. I know it’s not conclusive proof, but it’s interesting nonetheless.
2. Anxiety
Another key factor for me was the level of anxiety, worry and fear that comes with having cancer.
I’d often find myself awake in the night ruminating, worrying about the treatment and my chances of survival. Anxiety and stress are known to cause or exacerbate sleep problems.
3. Tinnitus
I developed tinnitus as a result of the chemotherapy, which was at its worst on the days I was receiving treatment.
I found the constant buzzing sound annoying, and it would keep me awake at times when it was particularly loud.
4. Disruption of sleep patterns
My normal routines and patterns were disrupted as I needed to go to bed and wake up at different times to take various tablets.
Keeping a stable sleep schedule is an important part of good sleep hygiene. So this disruption made it hard to sleep well.
5. Change to diet
It’s well known that chemotherapy can affect your appetite. Dexamethasone can also affect appetite, and in my case, I had unusually intense cravings for carbohydrates.
I’m sure my partner at the time must have wondered if I would ever stop asking for spaghetti for dinner!
6. Generally feeling bad
As anyone who goes through chemotherapy will know, you tend to feel unwell and just not quite yourself a lot of the time.
I believe this contributed to the sleep problems, as I would often wake up feeling pretty dreadful. I’d then find it difficult to distract myself from the sensation of discomfort I felt in my own skin.
Coping with the insomnia
Even when the dose of dexamethasone was reduced, I still had sleep problems and just tried to cope as best I could.
I tried to stay calm, and remind myself not to stress out when I had difficulty sleeping. I did simple breathing exercises to take my mind off any discomfort and help me relax.
I made a concerted effort to eat healthy food, avoid stimulants and heavy food in the evening. And I went out every day for some fresh air and daylight, even if it was just for a short walk in the park.
Essentially, I just tried to manage my insomnia the same way I would do if I wasn’t having chemotherapy.
Looking back, I don’t think there’s a lot more I could have done to improve my sleep other than taking me off the dexamethasone altogether.
I didn’t take any sleeping tablets, as I already felt up to the hilt in medication. So largely I just put up with it and tried to remember that I was going through all this to try to cure me of cancer.
And fortunately, I’m still all-clear ten years later. July 2021 marks a decade since my last treatment, so it’s a major milestone.
My advice to anyone experiencing sleep problems during chemotherapy is to talk it through with your oncologist. At the end of the day, there’s a reason they use it but they still might be able to help you with your sleep problems or other side effects.
I also recommend adopting good sleep habits in general, because every little bit does help. And work on the anxiety side of things using your support network and any other options available to you.
Your views
Have you been through, or are currently going through chemotherapy? Have you had problems with sleeping, and do you know what might have caused it?
Please share your story and thoughts in the comments below.
If you don’t feel like commenting, but are currently undergoing cancer treatment, I wish you the very best. Stay strong, and stay hopeful.
I have BC and had chemo TC today cycle three. I’m up and have been awake since 7 a.m. The last cycle I was awake 37 hours and then I crashed. I can handle one night of loss sleep, but not several. The Dex raises my blood pressure so high that I could have a stroke so my doctor only gives it to me on day of chemo. The first chemo she had me take the pills day before and one after. It was too dangerous for me.
Hi Debra
Thanks for sharing your experience. I hope the treatment goes well for you, and that a close eye is kept on the meds, which I’m sure it will be.
Stay strong
Ethan
I was lucky. The Dex I took for chemo kept me up twice for 40 hours in a row (with some naps), but I loved it. I had none of my usual anxiety and indecisiveness and got a lot of work done.
I am on the same page as you with my cancer! Keeping my end on the prize! I got my badge last week. NO ONE tells you when your hair is going to fall out! By my 2nd week, BAM it started! I just GI Jane what was left (quite A LOT) but sadly still coming out!
I just went for my 3week 2nd round chemo & DANG DEX is for the birds!!!!! I can’t sleep, go to bed @ 11-12 & up by 2AM! Sigh! Going to try Ambien tonight & let’s see! If not I may go Medical MJ just to sleep! Not to mention these intense SUPER DUPER Hot & Cold flashes to the point I have goosebumps!!!! I get I can’t go off the med for 6 more months. It’s helping to shrink the tumor! Was already 1cm!!!! So I just laugh & think “WOW!!!! This is 6 more morbid months of this! But I keep positive &”swimming”! What is else is there to do? Lay down and die? Nope! Too young we are & those of us who just roll with it & don’t call 911 when our fever is 100, or want an IV despite having a New port cath; are the ones who will be 10 years cancer-free down the road! To every lone: DO NOT stress! Just roll with the punches: you WILL fair better when you don’t stress this mess! Thank you for your blog!!! It helped me w/ my sanity!!!!!!
I was diagnosed with stage 4 stomach cancer about a month ago. I didn’t have any of the normal symptoms of stomach cancer until it metastasized and spread to my skin in the form of tumors. I am going through my second dose of chemotherapy and was prescribed dexamethasone. I have been suffering from chronic insomnia since being a teenager, but this is brutal. The first night I got a little less than three hours of disruptive sleep, the second night about two, and tonight only one. I have had numerous sleep studies and have been on nearly every prescribed sleep medication in the past, but nothing works, and the long-term possible problems with cognitive decline is not worth it to me. Before my diagnosis and treatment, I used to wake up at 4 am during the workweek to lift weights for two hours before work. This was the best remedy for my sleep problems, but now I unable to do this. I am still trying to adapt to my isolation due to COVID-19. Not to get too political, the best natural drug to help cancer patients is medical marijuana. It treats chemotherapy side effects such as nausea, increases appetite, and reduces anxiety and stress, which will lead to better sleep. In most cases, I think medical marijuana is just a legal loophole to get high, but there are legitimate uses of the drug. Cancer treatments seem to me as the harshest form of medicine on the planet, but there is no compassion from our political appointees since their loyalty and pockets are filled by lobbyists of Big Pharma and the private correctional facilities. As a federal employee, the seemingly obvious method of reducing the side effects of cancer treatments are completely forbidden, it is decriminalized by states, but not made legal on the federal level, so the harsh symptoms and lesser quality of life has to be endured until my cancer either goes into remission or I die a painful death. This post is not intended to be negative, but it points to an uncomfortable truth. The good news is that the skin tumors are already shrinking in size, some of them significantly. Combine this with my hair falling out this week, a badge of honor, I know that the harsh medicine is fighting the growth of my cancer. My mind is always focused on the finish line. I would love to run across, but if it is on my hands and knees crawling over, then so be it. Stay Strong!
Hi Patrick
Thanks for sharing your story. Having been through cancer during ‘normal’ times, I can really appreciate how difficult it must be to go through it during Covid times. I feel for you, and send you all my positive energy and thoughts, for what it’s worth.
As for sleep, I also understand. My cancer journey was riddled with sleep problems, made worse by the fact that I ended up sleeping a lot during the day because of my treatment. And like you, my exercise routine of martial arts, swimming and weights was impossible to keep up. Just going for the occasional walk was about all I could do when I was in the thick of it, and some days, just getting outside or sticking my head out the window for fresh air felt like progress!
I hear what you say about medical marijuana and pharma. I remember being advised by some friends to look into alternative treatments instead of surgery and chemo. In the end I chose chemo and surgery because I just wanted the pain and lumps to go away and didn’t believe it was going to happen with a change in my diet etc. I had brutal treatment and still have scars to show for it nearly a decade later. But I’m still here, so I’ll take those scars. I hope you also get through your treatment, both physically and emotionally. If you have to crawl across the line, it doesn’t matter. Just get yourself across that line!
Stay strong
Ethan
This post has been helpful, Ethan. Thank you and I’m glad to hear you are cancer-free! I was prescribed dexamethasone to help me with low oxygen saturation levels and breathing problems due to Covid. Almost immediately, I began experiencing sleep problems (I’m a 67 year old female, so in the higher risk group for dexamethasone sleep problems). I’ve been falling asleep with no problem at 9 or 10 pm and then waking up about 1 or 2 am. I wake up calm and there’s no tossing and turning, but just cannot go to sleep. Hence, up at 3 and posting to you. I took my lost dose of the steroid yesterday and hope as it leaves my body, some good sleep returns. As I’m sure you know, it’s tough to get well when you can’t get good sleep.
Hi Cynthia
I’m glad the article was helpful and thanks for your positive words. It must have been very stressful for you as well to need this kind of treatment for Covid. I hope you recover quickly and fully and that your sleep returns to normal too.
Regards
Ethan
Thank you so much for sharing Ethan, a trouble shared, helps you realise you are not alone. On week 6 of 12 weekly chemo, I have found that the day of treatment, I just can’t sleep no matter what I try. I tend to watch Netflix & catch up on emails. I usually head to bed around 05.30 & will sleep until 09.00. I am usually ok, during day 2 and will try not to nap. Day three is when I am really tired, but can sleep late, nap in the day & sleep at night. Most weeks after day 3, I return to a normal sleeping pattern – I got very stressed the first few weeks, but having settled into a routine, knowing what to expect has helped enormously- only 6 more weeks after 6 months of chemo left, so light at the end of the tunnel. I do have odd days where I feel low, I take myself out for a walk, even if only around the park and that lifts my spirits.
This is a roller coaster journey but it hasn’t all been negative, I have learned to appreciate the little things and have been bowled over by people’s kindness.
Hang in there, be kind to yourself and I have found taking one day at a time has helped me cope when starting this journey, I felt completely overwhelmed.
Sending lots of love to all those affected by cancer. Xxx
Sandie
Ps I have the odd glass of red wine 🍷 & have found this helps me relax & sleep too.
Hi Sandie
Thank you for sharing your experience too. I remember trying to drink the occasional glass of wine too during my treatment just to help get through it, but it always gave me awful headaches! Probably for the best anyway. But I also remember my surgeon telling me that if it helps me cope, as long as I don’t go overboard, it’s probably fine.
It does sound like you’ve had a long journey, so hopefully this is the final stretch now.
You’re so right about learning to appreciate the little things. I remember having to hold back tears the first time I was able to walk into a coffee shop without anyone supprting me, and order myself a coffee after months of being unable to walk more than a few meters at best. Such a small thing that years later I’m pretty sure I take for granted all over again now. But when I read comments like yours, it gives me a much appreciated, and important, reminder to never forget how I felt that day.
Stay strong and all the best
Ethan
Hi Ethan
I was diagnosed with bc just before Christmas 2019, not the present I was hoping for lol. I’ve had two surgeries, lumpectomy etc and have my 4 Chemo later today. I started on 8 dexamethasone yesterday for 3 days, the highest dose for me but Change of treatment so hence change, I’ve been in bed since midnight and am still awake at 4.30. I took prescribed sleeping meds but hasn’t made any difference, read a book with no results. I’m currently on sofa as tried sleep sound on app but nothing. I looked into the side effects of dexamethasone and here I am. I feel better knowing I’m not on my own in this and that it’s not just me. I will see what oncologist has to say but definitely the meds as generally am tired if I do anything and today not stopped but hey ho onwards and upwards now. Thanks for listening.
Warm regards
Dawn
Hi Dawn
Thanks for sharing your experience. Hopefully, your oncologist will be able to look into this with you and recommend ways to help your sleep if possible.
All the best with your treatment.
Stay strong and stay positive.
Regards
Ethan
Omg snap! I’m on the same 8 a day for 3 days. This is day 1 of my 5th round of chemo abs wide awake abs chemo is at 8.30am 🤦🏻♀️
I’m like this every time it’s so annoying and have terrible restless legs!
Tried the wine thing to try to relax but no good, even had 2 codeine as I fell last week and broke my arm on top of all this but no luck. At least I know I’m not alone xxxx
I started weekly Paclitaxel and Herceptin adjuvant treatment on 12/12/19 for HER2 positive breast cancer – very small tumors found during a lumpectomy. I receive Pepcid and dexamethasone infusions prior to infusion, as well as a 20 mg. Benadryl pill. I’m one of those odd persons for whom Benadryl makes me wired, not sleepy. I end up feeling pretty speedy for about 36 hours. The first night, I get maybe 2-3 hours of sleep. I go to bed around 9, MAYBE sleep an hour or two, then I’m awake. I try reading and just not worrying about it. The day after is a bit brutal: I’m sleepy AND energetic. Finally around 6 or 7 on the second day, I get really tired. The rest of the week gets progressively better, but still very, very fitful sleep. I have begun to take 3-5 mg. of melatonin and that may help some. However, I still wake up every couple of hours. I end up taking a very small bit of XANAX once or twice a week, but I don’t like to. It helps me sleep for about 6 hours. I also get mildly depressed about 2 days after treatment, and it remains 3-4 days. Whew, what a ride this is!
Hi
Thanks for sharing your story. It does sound like a ride, as is the way with cancer. I hope you manage to find a solution to your sleep problems. Hang in there and stay strong!
Regards
Ethan
Thanks for this posts reply.
First week of chemo for BC starting last Fri.. I’ve never had issues sleeping, but it has me up wide awake after 4 hrs sleep. Heartburn doesn’t help. Took some cider vinegar and water, Bach sleep gummies, and Robitussin for a cough. Still elusive. OTC sleep aid worked but ran out. Got up, took pup to tinkle. Back at it. Just went on Amazon and ordered some natural sleep aid with minimal melatonin and good reviews (sleep fairy?) Crossing fingers!
I am on treatment too and had terrible acid reflux/heartburn.. My chemo nurse suggested asking my GP for Omeprazole and I didn’t suffer with it again after that..
It’s 4am here and I’m wide awake.. Yes dexamethazone IV as part of treatment I find that sleeping on an off the next day does help and can get back on my sleep pattern the following night. Also take cocodamol and piriton helps..
Big hugs and positive thoughts come your way to my warrior sisters out there xxx
Well it’s 3:30 am and I’m looking up my chemo and prep drugs – (breast cancer) Taxol, Benadryl, Pepcid and dexamethasone – to see which causes insomnia. Clearly it’s the dex. I get it by infusion. I also blame it for 15 pound weight gain over these 5 months. I smiled about the spaghetti. I have that. The flushing and disregulation of body temperature is probably chemo induced menopause. Also I am having terrible muscle twitches, restless leg. It seems to come with the insomnia. At least with the Coronavirus chaos now I’m going to take a week or more off work, so maybe I can rest. I am tired of all this, but it beats dying.
Hi Elaine
Thanks for sharing your story. Have you asked your oncologist’s opinion about your sleep problems, and if they think the dexamethasone is playing a key role? It sounds like you’re going through a tough time, and it must be an extra worry with Covid-19. I hope you can stay home, stay safe, and still get the treatment you need.
Stay strong
Ethan
I am diagnosed with rare cancer amyloidosis. I have been for the second time for cycles of chemotherapy and now on session 2 from cycle 4 of weekly Velcade, cyclophosphamide and dexamethasone 40mg once weekly
I have severe insomnia and I did not sleep on the night of taking dexamethasone and this lasts for two nights but in the following days become sleepy all time and falling asleep even when setting on a chair and in my office during working, associated with low mood and many negative ideas as well ass unexplained nervousness for anything.
I do not have any side effect from the other drug cyclophosphamide and Velcade but my problem is with dexamethasone.
some points help to bypass difficulties with this insomnia.
-try taking dexamethasone just before hour from sleep and not in the morning, but discuss this with your doctor first.
-Explain to your family this change in your life to understand you when nervous for no reason and the change in your mode.
-do not try to sleep if you are not sleepy, go far from your bed and do something you enjoy it like reading, writing or anything else and when you feel sleepy go to your bed but be sure no will body die from lack of sleep for one or two or more nights, lucky the lack of sleep associated with good level of energy.
I personally do not have true problem with my insomnia but spend the whole night writing code of software as happy for me.
Now I am still living with very good condition after three years from time of diagnosis of amyloidosis which has been known for a few years ago as fatal cancer within 6 months from diagnosis.
Hi there
Thanks for sharing your story and your tips for coping with the sleep problems. It’s also great to hear you’re doing well three years after your diagnosis!
Regards
Ethan
As you can probably tell by the time today is dex day! This is my 3rd line of treatment with it (for multiple myeloma) as part of a triplet combination (Revlimid and Ixazomib). I have previously also had some of the drugs mentioned by others but it is definitely the dex that’s the problem as week 4 is just as bad as the other 3 but I don’t take the other 2 drugs in week 4, dex only. I started on 40mg once a week but had to reduce to 20 as side effects lasting too long. Even on 20 I find I’m away with the fairies on days 2 and 3 after taking dex. I would be interested to know at what dose (on average) does the insomnia become significant? Most comments seem to be those on similar regime to me (20-40), but one or two seem to suffer on low doses. I know many won’t agree with this tactic but I have found if I drink a bottle of red wine on dex day I do get up to 4 hrs sleep as opposed to 0-2 alcohol-free!
Hi Phil
Thanks for sharing your experience. I don’t know what dosage equates to insomnia beginning, or becoming significant. I imagine that depends on a multitude of factors and the individual person. You’re probably right about not everyone agreeing with that tactic. But I remember my surgeon telling me that ‘whatever keeps me sane and positive’ is fine by him – within reason of course. I wish I’d been able to drink wine sometimes during my treatment, but it just gave me awful headaches!
All the best with your treatment.
Stay strong.
Ethan
Hi Phil!
Fellow MM patient here with same meds and same problems. Just wondering how you are doing with your treatment and how you’re feeling?
I was diagnosed 8/11/2020 and after 2 months not much progress and the bone pain is excruciating.
Hope you are doing well.
Michele
Had dexamethasone in conjunction with TC chemotherapy for E+ breast cancer over 2 years ago. Was also given sleeping tablets. On 1st chemo cycle – for 4 nights had only 1 hour sleep/night even with tablets. Couldn’t concentrate, couldn’t use my hand to write, couldn’t read the newspaper, mind was racing, couldn’t put any of the steroid-induced energy to any use! Spoke to a local chemist who recommended I speak to cancer nurse re steroid-induced psychosis. On the next cycle, steroids reduced by 25%, sleeping tablets discontinued, haloperidol & xanax introduced. What a change! Slept soundly, & lived far more normally.
Now 2.5 years out, doing great. Just sorry I had never heard of the possibility of steroid psychosis, and lucky I have a great local chemist.
Hope this helps anyone else who doesn’t know what’s happening them – it’s completely manageable and it comes to an end rapidly.
Hi Maura
Thank you for sharing your story. It’s great that you’re 2.5 years out!
Regards
Ethan
I have my first TC chemo today for breast cancer, invasive lobular and haven’t been able to sleep due to the dexamethasone started today. My instructions are 2 tablets twice daily, day before chemo, day of chemo, day after chemo. My mind is racing, hyper, wide awake and it’s after 2 am (I go to bed routinely at10 pm.). I always have insomnia with steroids but this is worse. I will talk to my oncologist tomorrow and see if an adjustment can be made. I even took an Ativan and it did nothing! Yikes! My previous chemo was 4 years ago for ovarian cancer and they gave me steroids and Benadryl the day of chemo, not before or after. But that was in the hospital and this time I’m going to an Outpatient clinic, my oncologist’s office. I appreciate any words of wisdom.
Had struggled with insomnia but was eventually able to manage with anxiety-reducing techniques and a little Ambien. This was before my breast cancer diagnosis. Did my first round of TC and Included dexamethasone 4mg 4x on day before, day of, and the day after. In addition, dexamethasone was part of my infusion. Asked my oncologist if I could adjust my dex but she said the risk of water building in legs, lungs etc., was too great. So now 3 days after my last dexamethasone dosage, I’m still battling insomnia. Even took a full Ambien which didn’t seem to do much. I’m relaxed but hard of sleeping even though my body is desperate for a respite. This makes everything worse because your body fails to recover and you don’t get a break from thinking about cancer. Taking some comfort in seeing others post their struggles with insomnia. Wishing you all well and full and speedy recovery.
What a great site to help you. It’s just so helpful hearing other people’s problems regarding sleep.
I just find if you don’t have a good sleep, it disrupts everything you are trying achieve in order to fight this awful disease.
But this is just so informative. I’m not going round the bend. It’s so frightening at times.
But we need to take these steroids to help our illness.
Hi
Thank you for your kind words. I’m glad the site is helpful. I know what you mean – sleep is pretty essential for keeping up your strength.
Stay strong and all the best with your treatment.
Regards
Ethan
First treatment yesterday CYBORD. I’m sure it was the 40 mg of dex that has stopped me from sleeping. Since 6am yesterday I have managed only a bare 2 hours sleep. (2hours sleep in the last 32hrs) I know that I’m not worried or anxious it’s definitely the dex. I feel hyper and just not tired at all. At least this should only be an issue 1 week out of 4.
Hi Anne
Thanks for sharing your experience. Sorry to hear your sleep is being affected, and of course that you need the treatment at all. Mention it to your oncologist and see if they agree it’s the Dex. Sounds from your comment like it’s only the first week that you’ll be taking it though?
All the best with your treatment.
Stay strong.
Ethan
It is the Dex for sure. In 2013 I took 40mg 4 times a month. Now I take 15mg once per week. I am not sure why it wakes people up, but all of us chemo veterans curse it. I take it along with a zopiclone when I go to bed. Hope to sleep from 10 til 3 on average. Apparently Dex makes one manic and I assume once you begin to wake up it just makes the mind race. Haven’t heard of anything to counter the mania.
Hi Ethan Green,
Hi All,
Okay, Dexamethasone 40 mg a week along with Velcade is a blessing for me in my third week of chemo.
Last week without it, I ended up in the emergency room for acute burning pain in all my bones. Delirious. My hematologist had me put on Prednisone Streuli a medication my body rejected violently.
I must say that I suffer from insomnia since years plagued with anemia with 8 and 10 hemoglobin after a crash of 4/4/5 hemoglobin.
I can definitively feel the pain of my buddies going through chemo.
I made a new sleeping station in the living room on a big futon I softened up with covers and pillows. I play Zen music every day or night. Breathe deeply chanting Sat Nam Yogi for strength. Kundalini Yoga for awareness helps me. It might help you.
I’m not afraid of my cancer. It brings me closer to God who I must fear more than ever to receive His blessings.
Be You All well in your path of recovery.
Gwen
Hi Gwen
Thanks for your comment and your positive words. It sounds like you have a strong attitude towards your treatment. And if that doesn’t work, there’s always your amazing sounding sleeping station:-)
All the best with your treatment.
Regards
Ethan
I began chemo 4 weeks ago, and, yes I have to say I do have insomnia. This article was so helpful, because, well, it was me!! I do keep a consistent going to bed routine, do not nap excessively during the day and do get regular exercise. My nurse practioner suggested I try some melatonin. I haven’t tried it yet; keeping this for if/when I get desperate. Again, thank you for the article!!
Hi there
Thanks for your comment. It sounds like you have a good attitude towards the insomnia, and are trying what you can to deal with it. Hopefully, that will help a lot.
Melatonin can help some people, but it’s always good to have a sleep aid as a backup plan rather than a go-to fix, in my opinion.
All the best with the treatment. Stay strong.
Regards
Ethan
Been on dexamethasone since being treated for chemo. Just don’t sleep and kicks off my sinuses and headache for about week.
In for my 4th chemo today and had about 2 hours sleep….got to take another 8 tablets for another 2 days then another 2 for 3 days. Going to be a long day. I thought with chemo I would be asleep all day!!!!!
Hi Debbie
Thanks for your comment. Talk to your oncologist about the lack of sleep and ask if they think it’s the dexamethasone. I know what you mean about thinking you’d be sleeping, not suffering from insomnia! But you might find that changes as time goes on. It did for me, as I slept more later on in the chemo.
All the best with your treatment.
Regards
Ethan
Hi Debbie, I did not know that “Dex” can cause sinus issues?
First chemo yesterday with 12 mg Dex via IV. Was up at 5:00 a.m., chemo started at 9, and was unable to sleep till nearly 1:00 a.m. the next day. Restless legs, occasional fast heartbeat, and felt anxious for unknown reason. My daughter suggested maybe Dex and I feel she was right. Saw this website and realized I wasn’t alone. Normally an energetic person, I get up 5-5:30. Today I awoke at 5:15 so I got a start by walking the dog and got my day plan in order, with great flexibility. I had expected to be tired. This is one of the few websites that mentions the Dex sleepless night issue. Glad you’re there.
Hi Beth
Thanks for your comment and for sharing your story. I’m glad you found the article useful! I imagine that being the start of your chemo, there may have been some anxiety at play there too. Hopefully in time you might start sleeping better again. But at least you have an idea of what else it could be that’s causing the sleep problems. Mention it to your oncologist and see what the say about the Dex.
All the best with your chemo. Stay strong and you’ll get through it.
Regards
Ethan
I’m on Dex whilst receiving radiotherapy on my brain. Insomnia is the issue. I’m also on anti convulsions, but it’s the Dex causing the issue. I was on it 2 years ago when transitioning to new NSC Lung cancer medication. I have not received chemo yet so I know that it’s the Dex.
I started on 12 mg two weeks ago & down to 4mg during breakfast. Just started taking sleeping meds to knock me out, usually only get 3 hours sleep. Trying to up the excercise, improve diet to combat the insomnia.
Yesterday, after 10th day of 3 hours sleep, I stretched for 40 min, walked for 40. Made wife coffee at 6am, basically stayed active cleaning the house until 2pm. Could not switch off or relax. Forced myself to sit at the PC & analysed bridge notes for another 2 hours. Finally started feeling exhausted at 8pm. Took the sleeping meds at 9. Woke up at 11pm!!
Seeing Onc on In 3 days to find an alternative sleep option.
Hi Scott
Thanks for your comment, and sorry to hear you’re in the middle of such a tough time. It’s interesting that you’re able to pinpoint the Dex as the cause of your sleep problems, though I suspect there are other factors contributing. Hopefully your oncologist can work with you to help you sleep better.
All the best.
Regards
Ethan
I had my first chemo treatment on Tuesday for breast cancer and have been given dexamethasone for 3 days the first night I had 4 hours sleep last night I was awake all night till just after 7am got fed up of lying there so tried reading for a couple of hrs dozed off just after 7 and woke up at 820. Feel so tired this morning hope it improves
Hi Sue
Thanks for your comment. I would definitely mention this to your oncologist, and see if they think it could be the cause and if there’s anything that can be done about it. Unfortunately though, sleep does get affected by cancer treatment, and can be an up and down situation.
Stay strong and I wish you well with the treatment.
Regards
Ethan
Hello Sue, I mentioned these sleep problems to my Oncologist yesterday. I just don’t feel tired and sleep for only a couple of hours. My body and my eyes then give up.
The Dexamethasone contains a steroid( I didn’t know) try not to find out too much. He suggested taking the second pill of the day earlier. Today I plan to remember! to take it after my bit of lunch.
I’m being treated, since February , for Secondary breast cancer and just take the anti sickness tablets for three days after each treatment.
Good luck and I hope my chatter may be useful to you.
It has been weeks and two chemo treatments and I have not slept a wink!!! Getting very week. I have tried everthing from otc to prescription. Double some up and still no sleep, I am very miserable!!!
LJ
Hi there
Thanks for your comment. Sorry to hear you’re struggling with the sleep. Have you mentioned it to your oncologist? Are you taking Dexamethasone? It might be good to talk to them about how its affecting you and see if they can help.
Stay strong!
Regards
Ethan
Thanks for your blog, I am awake right now from dexamethasone – For the past 3 mornings, I have gotten up at 5 am; latest 6 am amazingly wide awake — were you on it continuously between treatments? —
I have been on 4 (4 mg) (ro maybe higher in hospital not sure) tablets since 11/14 but starting the taper down today. My last tablet is Friday Nov 25th and then I have 12 days before my next in-patient chemo (I have NHL)– and will of course discuss whether they can lower the dosage. By then hopefully my new growth that was being treated and my leg swelling will be down as well.
Fortunately I have been totally asymptomatic during my whole “illness” and am usually quite the sleeper so do hope this is just in response to the steroids. Any other tips welcome but of course trying to get exercise and eat well –
Hi Kathy
Thanks for your comment. To be honest, it’s such a long time ago now, I can’t quite remember if I had it every day for the 2 months! I have a suspicion it was only on chemo days which would have been around half the 2 months. Very good question! I guess my brain is slowly trying to forget all the details.
I imagine in your case it could well be playing a part, but so could worry etc. Maybe you could mention it to your oncologist and see what they say. And as you say, keep up the healthy lifestyle as much as possible.
I wish you all the best in your treatment.
Stay strong
Ethan
Hello. Thank you for the post. My mother is suffering from cancer and is undergoing chemo. She was diagnosed with breast cancer in 2009 and then 4th stage liver in 2014 . Then she was perfectly fine due to a miracle. Now again it has come back in liver and pancreas. She is under chemo and is unable to sleep and unable to eat. She doesn’t like to eat at all, finds everything tasteless. Doc said the chemo is without side effect and there won’t be any hair loss. Can all this be a side effect of chemo and will she be alright once done? Or it’s a part of the disease? Looking for your valuable input. Thank you.
Hi D
Thanks for your comment, and sorry to hear your mother is going through this. I really couldn’t say whether the appetite and sleep changes are due to the chemo or disease. I find it odd that the doctor said there would be no side effects from the chemo. I think most people have some effects, even if mild. I’d ask them again if I were you. Equally though, the appetite loss and sleep problems could be due to stress or anxiety because of the illness and treatment.
I wish you all the best
Ethan
Hi there, I’m experiencing the same thing with chemotherapy. At the beginning I thought the insomnia I have every night was natural of the change of routine or the stress involved in the general situation. But now I got interested in your comment about this drug Dexamethasone I’m taking.
I had talked with my boyfriend about this, I told him I didn’t want to take different kind of drugs to prevent the same thing (sickness) but he thought I should take everything the doctors prescribe to me! And I kept on this, I guess in the next visit to the doctor I will ask to reduce the doses of this! Thank you for the information you are sharing, much better than the comment of my giant!
Kind regards!!
Hi Loris
Thank you for your comment. Sorry to hear you’re going through chemo right now – I do hope you’re getting on ok with it and that’s it’s not too much of a struggle. I can understand your reluctance to take more medication – it seems enough just to take the chemo, I know. And I can also understand your boyfriend thinking you should take all the medication your doctor prescribes you. Both points of view are I think totally understandable and valid. However, if the drug is causing you other side effects which are impacting on your quality of life and health, then perhaps talking to your doctor about it is a good course of action. You can work with them to decide what the best combination of medication and dosage is to prevent the side effects of the chemo but also prevent side effects of those drugs.
All the best with your treatment and stay strong!
Regards
Ethan
My sister had hogkins lymphoma…the curable one. She had 8 rounds of chemo ABVD. She was to take dexamtethazone after each chemo for 3 days, It has also been shown to prevent bleomycin toxicity. Sadly, they never checked her lungs and she died fr bleo lung toxicity. Please take all meds despite their side effects. They do so much greater good overall .
Hi Karen
Thank you for your comment, and I’m so sorry to hear about your sister. I remember being told about the possibility of lung problems due to Bleomycin, but I don’t remember them telling me the dexo was to help with that. Or maybe I just forgot considering all the information I had to take in at that time. You’re right in that the meds are usually important for many reasons, which is why I suggest talking over any problems with the oncologists before taking any decisions yourself.
Once again, I’m sorry for your loss.
Regards
Ethan
I just had my first chemo today. Breast right removed and #1 lymph node. Im on this med. I always had problems sleeping since i was in the crib. My concern light headed dizzy feels like my head to explode. I go back tomorrow for booster shot. For white blood cell. Also receiving it due to I have Lupus Hep B dormant and Hep C active plus DDD. Doc will be informed about my head
Hi Sherry
Thanks for your comment and for sharing your story. I think the best thing is to keep talking to the doctors about everything you experience. It’s no easy ride chemo, so you’re bound to have side effects. It’s a case of managing them as best as possible. I wish you all the best with your treatment.
Stay strong and positive.
Regards
Ethan
My wife is going through chemo after having a hemi-glossectomy (removal of half the tongue after SCC was discovered). She not only is experiencing the insomnia, but also heightened levels of dilerium bordering on psychosis. We thought at first it was the benedryl in the chemo regime, but last week I actually watched the dilerium begin and no benedryl was given. the doctor has decided to forgo the steroid part of the drugs so we don’t create this problem again. The episode was very acute. Do you have any tips for how to “get ahead” of the nausea that is sure to be worse now absent the steroids being infused? She takes fenegren 3 times a day and I give her plenty of fluids through her peg tube, but any other thoughts would be welcomed. Hope you are progressing well in your recovery. Ed
Hi Ed
Thanks for your comment. And thanks for your positive wishes. I’m happy to report that I’m now 4 years out and so far so good. I hope your wife also has the same success in her treatment.
Unfortunately I’m no expert in dealing with the sickness from chemo. I think to a large extent I just rode it out, trying my best to cope with it as and when it got particularly bad. Fortunately the anti-sickness meds I took did a pretty good job, and although I often felt nauseous, was never actually sick. I think the main thing it just to keep talking to the oncologists as much as necessary about how she feels. In my experience they are very open to trying new medication to try and get side effects under control.
I wish I could help more, but unfortunately all I can offer is positive wishes.
All the best
Ethan
Thanks Ethan. We’ll work through this and stay positive. Glad you are doing well. Ed
You’re welcome and thank you also. Stay strong:-)
Why did they not give her Zofran & Compamazine IV plus Orally of the DEX was that bad?!?!? SMH 🤦🏼♀️ I have bottles to take when I get home & for Nbr to few days after the chemo rounds. It’s a Golden Rule! BTW, I am RN… so I do understand a bit more; however I don’t know everything about cancer. But I do know painful n/v line that! So sorry!!!!
For 2nd cycle they reduced dexamethasone from 8mg to 2mg in my drip and i didnt take any orally. I didn’t get insomnia at night time but still felt very restless in the daytime and just felt weird.
Hi Leopoldo
It’s good that the insomnia stopped. I think chemo is such an intense thing to go through, feeling restless is quite normal at times. There are so many factors at play, it’s not easy to keep a stable energy throughout. Just keep talking to the oncologists about what you’re going through and hopefully they can help make it as smooth as is possible.
All the best
Ethan
This was like reading my diary!! I wake up everyday at 230 and cannot fall asleep until 430. On Dexamethasone which i take before chemo. Trying self hypnosis now.. It worked before i did chemo so i hope it works this time..
Hi Malaika
That is quite similar indeed. I hope the self-hypnosis works for you – you might also like to check out the articles about relaxation techniques and mindfulness I posted a while ago in the sleep hygiene section.
All the best with the treatment.
Ethan
Wow this is so me.
I had chemo on Monday and up until last night I had 5 hrs sleep the whole time.
I actually took a sleeping pill last night as on Monday when I took one it didn’t work. I was desperate as was getting so weak but also buzzing at the same time
Hi Mandy
Thanks for your comment. Maybe if you think it’s affecting your sleep you could ask the oncologist what they think? You need your sleep to help you get through the chemo:-)
I wish you all the best and lots of strength. I’m 3 years out now and still going strong. It can be done:-)
All the best
Ethan