Strange symptoms

[LilyMir]

Hi everyone, the past 1-2 weeks I have been feeling a lot of fatigue. As you may recall, I am on Tagrisso targeted therapy (since Sep 2022), my last CT scan was Dec and was NED as they reported after which they told me my next scan won't be until July!

This (new) fatigue is bizarre, I feel sleepy with very heavy eyes. It resembles the feeling  you get when you have not slept for days. I however have been sleeping, not great, but OK (I think). I intentionally try to sleep earlier and wake up later but I cannot shake this "sleepy too tired I just want to nap" feeling. Today I could not stop yawning as I was out with my kid for hours! Not yawning since I came home though. Really bizarre (and it does not help when you google and get results that yawning can be a symptom of a brain tumour!).

Of course I am so worried now, recalling how fatigue was my only symptom before diagnosis (though it was not the sleepy type then). I called my oncologist and she is not returning my calls (yeah, lucky us in BC!). I tried the on-call emergency oncologist today out of despair but he seemed not too worried as he put it. He told me he does not think it is an ER kind of thing (unless I start having shortness of breath at rest) and that he will email my oncologist in case she wants to do tests (she never called me so far and my past experience is that she does not care, even when I had severe side effects of chemo!).

I also mentioned this to my family doctor and he did not seem to make much of it, he though prescribed anti-acid medication after asking me if I get acid reflux (I do sometimes but not often and it is manageable for the most part with TUMS) and he said reflux can cause fatigue...

I cannot help being concerned as this is not normal for me, I have never felt this sleepy, on and off during the daytime (it comes and goes). I don't feel like having much energy either, not even for gentle yoga (I used to have better energy, at least sometimes).

Has anyone here had such symptoms? I am not sure if it is Tagrisso related, cancer related, or mental health/anxiety related. So depressing.

[Tom Galli]

Lily,

Chemo, including Targeted Therapies, can often cause fatigue as a side effect. Onset can vary. Some experience fatigue after the first treatment and in others there is a delay in onset. 

I had an onset of intense fatigue after my third line of Taxol and Carboplatin. My oncologist suggested I complete a sleep study and the study showed I was experiencing sleep apnea, and chemotherapy may or may not have caused this syndrome. I started using a CPAP and my sleeping dramatically improved and fatigue waned. 

A couple of years ago, I again experienced a dramatic increase in fatigue during the day. Now using the CPAP, my doctor gave me a pulse oximeter that I taped to my finger to record 02 saturation reading throughout the night. The oximeter sent these readings through WIFI to my physician's office for analysis. The data showed that my O2 saturation rate was dropping below 90% during the night. My doctor prescribed supplemental O2 during sleep and that solved the problem.

I hope you find the cause and more importantly the solution.

Stay the course.

Tom

[Karen_L]

Fatigue can be a side effect of Tagrisso.

BT (before Tagrisso), I had huge fatigue after radiation. It sounds counterintuitive, but exercise helped keep it at bay. Once I was able, a brisk walk was helpful. Also, not napping for more than an hour during the day.

FWIW, I didn’t have fatigue before my brain tumor was found. And, Tagrisso penetrates the blood- brain barrier so is the go-to for brain protection. 

Even now, if I miss a regular exercise day, I can be overcome by fatigue. I think there’s some stuff on Lungevity or GO2 about dealing with fatigue. That might be a bit more specific to a lung cancer person, thus more helpful. 

Do you have nurse navigators in your medical system? These are folks who can field questions like this and get you information. Or social workers at the center where you were treated? There are both at my cancer center so if I had a concern that I felt wasn’t being addressed, I might turn to them. 

Hang in. 

 

[Justin1970]

Hi lily 

So sorry your going through this, the fatigue is terrible I'm so tired its unbelievable they said its all to do with the treatment to my brain tumor and could possibly take up to a year to get over it but I don't think I felt like it before i found out about the tumor so i wouldn't worry to much until you get some answers from the oncologist, I really hope you start feeling better soon,

Take care Justin x