Lonsurf

[belladeka]

I was diagnosed at the age off 33 with bowel cancer after trying many treatments, intravenus and oral with having the spots i have left still active over 3.5 years.

Just recently i have started taking lonsurf an oral chemo tablet which has just recently come on the P.B.S in december 2018, i started taking it about a month ago and since have  started getting chronic back pain. 

Affecting my sleep, work, relationships and getting in a vicious cycle of not sleeping and the pain is exhausting.

I am wondering if anyone else is taking this drug and if so, what side affects are you experiencing? 

[Katekat]

Morning @belladeka,

How are you doing today?

Sorry to hear about the pain you've been experiencing, that must be incredibly debilitating for you 

I had a quick search on the TGA (Therapeutic Goods Administration) information available on Lonsurf and couldn't see anthing about back pain in there. You can access the information here (just hit agree on the splash screen to access it) and check out all the known side effects.

Has anyone else had any experience with Lonsurf?

Cheers,

Kate

Online Community Manager

[belladeka]

Hi Kate,

thank you for the response but since then ive been to peterMac and had another PET scan which unfortunately the LONSURF ive been taking isn't helping and the cancer has now spread to my lungs. my next question is that people that are on LONSURF have they had the same outcome and is it best to go back to another type of chemotherapy.?

[VM]

Hi Belladeka,

How are you going? 

I spotted your post tonight, after my stepson has just started on Lonsurf. He has been stage four bowel cancer, diagnosed July 18. His adrenal lesions have grown significantly in a month 😞

I earnestly hope you are finding relief at this time

Regards

VM

[Margie00]

Hi there,

i am in hospital at the moment for control of severe lower back pain

which I think maybe caused by the chemotherapy drug Lonsurf.

has anyone else experienced this back pain and how was it treated.

Would love to hear from some one who has experienced this. My pain has settled 

now, but I would like to find the cause to try and stop it again.

Cheers. Margie