Welcome to the forum Ladybaba although I'm sorry about your husband and for the reason you're joining us.

Unfortunately I haven't been able to find any recent discussions about this within our community. I do hope someone does come forward and is able to share their experiences of this with you but you may have more success on Bowel Cancer UK.

In the meantime, if you'd like to have a chat with one of our cancer nurses about Lonsurf you're very welcome to give them a call on 0808 800 4040. Their phone lines are open Monday - Friday between 9a.m -5p.m.

I really hope you both have a wonderful time at your daughter's wedding and the lower dose of Lonsurf alongside the anti sickness medication will be more effective.

Best wsihes to you both,

Steph, Cancer Chat Moderator

Hi Ladybaba

I to have been told by my oncologist that I have to go on Lonsurf.  What I've read about this is not to good,  how is your husband doing on it.

Like your husband I have had 3 different rounds of chemo treatment for my colon cancer which spread to my Liver and is now in my lungs. 

Really apprehensive about going on Lonsurf, just need some advice. 

Hi [@Resusman62]‍ 

my husband had to stop taking lonsurf after taking 3 and half days of his first 5 days as he developed a urine infection but he had really bad sickness on the day he stopped which they said was probably caused by the treatment. He is going to try again but on a reduced dose alongside an anti sickness drug. Our daughter is getting married in less than 4 weeks so the oncologist agreed and supported his decision to wait to start treatment after that. As it's the last treatment available to him he feels he has to give it a go.

Everyone has different reactions to these treatments so hopefully things are ok for you.

good luck with it 

Hello,

I was just wondering if your husband tried a lower dose and how he got on. I had my fist round of Avastin and Longsurf but like your husband suffered severe side effects and couldn't face taking  any more Longsurf tablets after day 5. I couldn't eat or get liquids down for 3 days due to nausea and just cleaning my teeth made me vomit bile. I was also so tired I was falling asleep all day long and then a week later my hair started coming out and I developed a rash. Only 2 weeks since stopping am I starting to feel normal. I am so suprised thst 5 days of tablets can be so severe. My phone ncologist said that's it's rare to get such bad side effects with this drug. I am now trying to decide between quality of life and quantity. Not an easy decision. 
kindest regards, Lucy

Hi Lucy

sorry I can't be any help to you as my husband passed away on 21st September last year. He made it to our daughter's wedding with a struggle and died four days later so he didn't have a chance to try any other treatment.

so sorry you are having so many nasty side effects it does seem a difficult treatment to get through.

wishing you well and hoping things improve for you soon xx

I am so sorry. That must have been such a shock for you all so soon after he was offered another treatment and just after your daughters wedding. Thank you for replying. I think I sm around 90 percent sure that I am going to choose quality over quantity and not try a reduced dose. I hope you are all pulling through. You realise through a cancer journey that no words can really help. It's all just very unfair and very difficult x