› Forums › General Melanoma Community › Still NED & Fatigue Issues
- This topic has 22 replies, 10 voices, and was last updated 2 years, 2 months ago by
gmschmidt.
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- June 21, 2019 at 4:39 am
Hi friends new and old!I am not on here as much as I used to be, due to work and life being busy with lots of non medical issues for once (finally). Wanted to share an update that I had my regular scans last week and it was as boring as ever. Never seen the word “unremarkable” written so many times on one report. With each scan this whole survivor NED thing gets easier and makes life feel a little more normal again.
I am sure I have mentioned my issues with fatigue that have continued long after treatment ended. I deal with major daytime sleepiness, feeling like I am never rested, feeling like I am in a brain fog a lot, and get migraines a lot more than I ever used to. After a year of blood tests, different specialist visits, couple surgeries, I finally decided to get a sleep study done. My PCP and I were thinking the sleep study would be the last resort as I don’t snore, I fall asleep and stay asleep well most nights, and don’t have any other factor that would indicate a sleep disorder other than being super tired all of the time. I spent the night at Stanford a couple of weeks ago. Was quite an experience, takes forever to get hooked up to all the wires and such. The room was very nice, just like a nice hotel room. Comfortable bed. Fell asleep as they recorded all the data. Well.. drum roll…. I have obstructive sleep apnea!! Mind blown!! It’s not super bad apnea but enough for the sleep specialist to recommend I start on CPAP therapy. So, this is gonna be a new weird thing I have to get used to. Haven’t gotten the CPAP machine yet, but I am really looking forward to feeling the difference once I start using it. No clue when this sleep apnea thing began. I was never like this prior to treatment. Is it related?? No clue, probably not, don’t see how it would be. In any case, for those of you dealing with any of those sleepiness-brain foggy-crappy-feeling symptoms I’ve been dealing with… I would say it wouldn’t hurt to get a sleep study! You just never know. I am grateful to have a real answer to this problem besides taking drugs to give me energy.
I am always thinking of everyone who is currently going through the trenches, those of you newly diagnosed and scared, and those veterans who continue to be rock stars in the community.
Hang in there if you’re in the rough of it and keep rockin if you’re wearing your NED badge too.
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- June 21, 2019 at 12:36 pm
My last treatment was 08/2018 but the fatigue has been a problem since the fall of 2016. It is horrible and effects my entire life. Nothing helps. I take or drink so many “energy boosters” but am a sleep at my desk by 8:30. Even though I would never do it but suicide comes to mind when I am trying to figure out how to deal with it.-
- June 21, 2019 at 2:53 pm
I know what you mean about those thoughts. Living this way is horrible. Have you ever had a sleep study done? -
- June 21, 2019 at 3:19 pm
Sleep study done. I have the double whammy, side effect of insomnia also. My oncologist prescribed me every sleep medication and a couple of other meds and nothing worked. In my researched I found you can’t overdose on melatonin and I guess you can’t. So I feel dead tired but can lay down and 5 hours later I am still awake. I have tried different beds, pillows, old wives tells and about everything you can think of. Sleep study didn’t work because I never went to sleep. Anyway, being tired and NED is better than being full of energy and melanoma any day. I guess the worse part was trying to get people to understand how bad the fatigue was. The mention of suicidal thoughts entering your mind when searching for a solution in my case really made people understand because even being told you are stage IV with 7 tumors in your lungs didn’t phase me but the fatigue is. Please don’t worry, God didn’t save me from melanoma for me to kill myself. Plus I have to many life insurance policies that wont pay if I do. -
- June 21, 2019 at 3:37 pm
Dang, insomnia is a major pain in the a**. I dealt with it for many years. Now I can fall asleep just fine… but wake up feeling like I never slept at all. Feels like I get cheated every night. I hope that the insomnia will eventually fade away for you too. I agree being NED with no energy is definitely better than having energy with the mel beast running amok! -
- June 22, 2019 at 3:11 am
I had insomnia for a few years before melanoma came into my world. It was present for the beginning of treatment and then somewhere around my second year of treatment I started to finally be able to fall asleep within 30 minutes of going to bed and started staying asleep for most of the night. I’ve been so run down and exhausted for over a year and a half now, it’s been no problem for me to sleep well. Not sure why I had insomnia before, but I think anxiety had a lot to do with it. So, I didn’t really do much as far as changing my sleeping habits or anything… I just eventually got so exhausted my body corrected itself… or perhaps went the other direction. Hopefully the CPAP will balance me out now. -
- June 23, 2019 at 10:21 pm
Glad young longer have insomnia. I guess the benefit of significant fatigue is that it can yield significant sleep! (How’s that for a stretchy silver lining?) Wishing you continued NED status. and best of luck with the CPAP. I’ll bet you’re more than ready to have your energy back. -
- June 25, 2019 at 1:49 am
Hi! You may have already tried this, but I have been reading about how cognitive behavioral therapy for insomnia (CBT-I) can be beneficial. I recently finished reading “Why We Sleep” and it discusses the shortcomings of traditional sleeping pills/medications, while mentioning CBT-I as one of the more promising treatments available. I experience occasional insomnia, typically when I just can’t shut off my brain, specifically the “what ifs” related to my husband’s melanoma diagnosis. I’m currently implementing all of the sleep hygiene strategies you have tried, but my next plan is to seek out a cognitive behavioral therapist if this is unsuccessful. -
- June 26, 2019 at 2:08 am
I had great success with CBT after years of insomnia and before I had melanoma. I wonder if the components of CBT differ per therapist. Maybe i can find a new way of implementing the same ideas. Will look at the book you mentioned. Thanks again.
Currently cross-eyed with sleep deprivation,
Lisa
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- June 21, 2019 at 1:25 pm
I have had the exact same problem. I did a year of treatment that ended August 2018. I sleep hard, but have constant sleepiness during the day. I also had a sleep study. It came back as mild sleep apnea. I know without a doubt that it’s related to the immunotherapy drugs, but can’t find a doctor that agrees with me. I did not have this problem before starting on the treatments. Don’t get me wrong, I am VERY grateful for my NED status. But want my energy back and am concerned how this affects my job. I am not glad that anyone else is experiencing this, but was thinking it was just me and now know it’s not.-
- June 21, 2019 at 2:55 pm
I know the feeling of being relieved that you’re not the only one with this issue. It feels isolating in real life as everyone around me has regular amounts of energy and I am over here passing out at 2pm. Did you ever get prescribed a mouth guard to wear at night? I know for mild sleep apnea cases that can be helpful. -
- June 21, 2019 at 8:37 pm
Oh that’s great. Hopefully you can start to feel a difference after using it.
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- June 21, 2019 at 2:04 pm
I was wondering about you recently! So glad you are doing well!-
- June 21, 2019 at 2:55 pm
Thanks Michelle! I hope you are also doing well 🙂
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- June 22, 2019 at 6:03 pm
So happy to hear you’re still doing the NED dance! I’m hoping the sleep apnea machine will be the solution you’re looking for and your fatigue quickly fades away. Thanks for always checking in…you know how welcome the good news always is!-
- June 22, 2019 at 6:21 pm
Thank you Amanda, hope you are doing well!
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- June 22, 2019 at 7:56 pm
Hello Jenn! Super excited to read you are NED! Congratulations!!! Your apnea thing, do your doctors think it can improve and eventually go away? I’ve been exhausted lately because I’ve been able to get back to work and the phone just rang like crazy! I’m taking July off and will fix my house! Anyway, congrats again. You are another beacon in this night called advanced melanoma.
As for me, I’m going for my 3 year scan in August. And I will also get a genetic investigation going, just to see. No scanxiety just yet. Been having different other things show up since melanoma diagnosis like inguinal hernia, higher uric acid levels (pre-gout symptoms in big toe, knee), mild BPH, recurring weird throat obstruction, some weird spring periodical but very short-lived (2h) urticaria flashes and all the internal incidentally findings with the scans (liver hemangiomas and cysts, pulmonary granulomas, rib benign chondroid lesions…) I’m listing these things for the newbies that are confused with what scans reveal. Ive had at least 8 different whole body scans so far (MRI, CT and Pet/CT) and about 4 different radiologist look at my insides. Some report the same findings, some report different new things, some are mute. It’s really disconcerting at times but this is how it is.
I’m hoping to not light up anywhere again and stay NED like you Jenn. I also have a much better support system around me finally so that helps a lot.
My best wishes for the coming summer! Be well. Big kisses!
Marc-
- June 22, 2019 at 8:29 pm
Thank you for the well wishes Marc, I too hope you continue to stay NED as well. As far as the sleep apnea thing goes, it is unfortunately a chronic condition and there isn’t really a cure or a way to “grow out of it”. If I were heavily overweight or had factors that I could control that contributed to it, then that would be the route to go. But, since I am just a weird anomaly and am otherwise healthy, it looks like it’s gonna be something I live with for the foreseeable future.Hope you enjoy your time off in July and will keep positive thoughts for a boring scan in August for ya!
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- June 25, 2019 at 10:44 am
I was dx’ed with apnea and have been using CPAP for just over a year. I noticed a difference from the very first night! I use the smallest ‘air pillows’ type mask and it works great. Took a week or so to get comfortable/ used to the routine. Well worth it! -
- June 26, 2019 at 12:55 am
That is very encouraging to hear, thank you! I have my appointment to get the CPAP and learn how to use it in two weeks.
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