Dad just started Carbozantinib, any tips?

Good morning, SA98. 

I am Jamie one of the online champions. Insomnia and lack of sleep is a really big issues for so many of us having cancer and the treatments that follow. I also suffered with this for weeks. 

There are a few things which can help with sleep. I understand sleeping medications is not always the answer for many people either. 

I personally tried to not force sleep, this just got me more frustrated and annoyed. So I would just accept I am not going sleep and my body will decide when it was ready. 

I also learnt new routines, so last hot drink at 6pm, not eating past 7pm so my stomach was not full, and switched the tv off at 10pm and recorded the rest to watch later the following day. I then found a few good podcast to relax to with ear phones and relaxed with a dimmed light on, or no light at all. All to make the bedroom more relaxing and less stimulating. 

I sprayed my pillow with a calming scent each night and this helped to calm my mind and re programme it as such to relate it for a time to relax and sleep. Could also try a radio station to a show which talks or plays some chilled music. I made sure any tablets, medications I may need during the night I could get at the side of me. This stopped me having to go to the kitchen or another room and meant I was able to stay in bed and just have all to hand. 

He could try some more relaxing pass times like doing a puzzle which is calming, reading a paper book as tablets and mobiles are okay but they use a background light. So again stimulates the brain more.  

These are just a few ideas and each one does take a week or two to become a routine, as with anythig to do with sleep takes commitment, adapting and being flexible. 

I hope this helps, and with my reply I am sure some others will come along with some other suggestions too. 

Please let me know if you need any other support and I wll be more than happy to do so. 

All the best, 

Jamie

Hello SA28

I have taken Cabo since I was diagnosed in 2021.

you can read my profile for more background.

I was started on Cabo at 60mg then 40mg but now on 20mg. So there may be option of changing strength.

I feel quite tired a lot so often have breaks but as I am taking meds for my Parkinson’s so it’s difficult to ascertain which meds the side effects are due to.

have had sore feet which are sorted by a podiatrist.

I have trouble getting off to sleep but find listening to a meditation help there is a good selection of different lengths on Insight Timer for free.

wishing you and your family best wishes.x

Hi SA98,

Sorry to hear your dad is going through treatment, like Gill ABD, I was treated with Cabo and found it to be a good drug. I was also started on 60mg and went down to 40 and finally 20. The main problem I had was a sore mouth/ tongue, it also meant I couldn’t eat anything spicy!! I used Benzydamine mouthwash to help control the symptoms. My feet were fine but my hands got sore. The only other nasty side effect was dreadful wind (sorry!). My advice would is not to be a hero when it comes to dose reduction, my cancers were kept in check just as much as they did when I was taking the 60mg.

As for steroids, for me it was very simple, take the steroids first thing in the morning, that way you have the best chance of them being out of your system before bed.

hope this helps

Best Wishes 

Graham

Hi - I was on a short spell of steroids and I was regularly reading medical white papers and the internet at 3am.  I am not sure whether this was due to the steroids or the stress of the situation.  I drank tea in bed whilst browsing the net.  Eventually I would sleep, but I didn't suffer adverse effects the next day.  

Thank you so much for your response! This is all really helpful, i really appreciate it 

Thank you Graham! I will pass this info on, i hope you are keeping as well as you can be