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 

[KatherineL]

Hello, I have just recently come acrosd this thread. My mother had stage 4 bowel cancer and a BRAF gene mutation which meant that her cancer didn't respond to standard chemo. 

My experience with my mum taking Lonsurf is purely negative. My mum was off all active cancer treatment for 1 month prior to starting Lonsurf. She looked great, was walking around well (assisted by a walker in big crowds/long distances) out and about frequently with friends or the movies and she and my Dad had just come back from a weeks break in Qld. 

My mum took Lonsurf (2 weeks on) and the 3rd week (first week break) my Dad said she was extremely fatigued and required oxygen all the time. 27th July 2021 she was taken to A&E due to breathlessness and here she was diagnosed with blood clots on her lungs - a serious side effect of Lonsurf. 

My mum had a history of thrombosis and had been on blood thinners for years (pre-cancer) her oncologist took her off blood thinners when she was on her targeted therapy as a side effect was eccessive bleeding, but never put her back on blood thinners (could the clots therefore have been avoided??)  

I started doing my research on Lonsurf and in a clinical trial 88% of patients who went on this drug for the treatment of metaststic colotectal cancer had a worsening of their disease and death. It has a 12% efficacy rate and from what I have read oncologists should not be prescribing this to patients whose cancer is so far spread that treatment really is not going to achieve anything.  This drug has so many negative reviews and forums on the nasty side effects it is alarming.

What angered me the most was my mums oncologist never gave her the ability for informed consent as when she suggested this drug to my mum she only said 'it will give you nasty side effects' no specifics and when my mum ended up bed bound 24/7 from Lonsurf and spent 7 weeks in hospital I asked the oncologist some questions around this drug and about my mums rapid deterioration physically from this drug and the oncologist looked me in the eye and said 'your mother was only on it for 2 weeks and that was clearly enough, it was going to be futile' 

This death along with some very frightening behaviour I witnessed in the palliative care ward accelerated my mothers death. 

From what I have seen/read about Lonsurf I would be making sure if your oncologist prescribes it that you challenge them with some questions