trifluridine/tipiracil (lonsurf) with bevacizumab (avastin)

Hi,

Hope you’re well. 

My partner had 3 months scan after 3 cycles of lonsurf and bev. We have not heard from oncologist and he is due next round of cycle on Tuesday, so unless we hear from oncologist on Monday, then he will have the 4th round. We assume there’s no progression and lonsurf and bev are keeping it in bay. However this last round was very tiring and demanding, he was asleep most of the day. 
How is your treatment going? 

Hi Jlikescats , hope you're well. I am feeling good, still on Avastin/lonsurf. Started intermittent fasting (16/8) and that has solved all my GI issues! Last scan was mid-August and although it showed no new metastases, the ones in the lungs have grown slightly. No change in treatment yet, unless the next scan shows more progression (due Nov 3rd). In the meantime I am flying to Germany to get a personalised autologous cell vaccine, trying to see if my immune system can join in the fight!

Hi all,

I'm due to start lonsurf and bevacuzimab next week after 18 months off treatment due to my cancer stabilising. I've previously had cetuximab/folrifi followed by folfox so this is my third line of treatment.

I'm interested to find out how this new treatment compares to those. I was taken off cetuximab after pretty severe rashes, and then folfox due to worsening, permanent neuropathy in my hands and feet. 

I run regularly and would love to keep this up but appreciate tiredness seems to be an issue with lonsurf/bevacuzimab.

One question - do you typically have steroids alongside either drug as I did with my previous treatments? Any other observations would be helpful. This forum string has already proved very informative! Thanks.

Petes

I have now had 10 cycles of Lonsurf and bevacuzib and prior to that I had 45 cycles of Folfiri until my nodules started growing again. Since being on Lonsurf there has been no change and a couple on my adrenal gland have actually shrunk. 

Yes the longsurf bevacuzib regime does make me fatigued especially about days 18-20 of the cycle. but otherwise I think the side effects are less than on the folfiri. I do not have Steroids. After the first 2 cycles they reduced the time of my drip down to 30 minutes so with the flushes etc usually in and out in 65 minutes. 

I have to go in 48 hours prior to the intended treatment for a blood and urine test wereas on folfiri I just had a blood test locally.

Regards Francis

Hi Francis,

This is really helpful thanks. Seems like I may have to do the blood and urine test as well so that's new for me and may mean extra trips to the hospital. It's encouraging that the Lonsurf seems to be working for you.

Take care,

Pete

I do my blood at my local community hospital (takes me 15 min max as just around the corner vs 2 hrs at The Christie where there's always delay) and the urine test is just a dip stick so I do it when I arrive for treatment.

Thanks Cecile. I normally do blood tests locally so would like to keep it that way if possible. We'll see!

I saw my onco yesterday, just before my treatment. I've had terrible hip pains that come suddenly and then disappear for weeks. Did a scan mid-August to check and there was nothing there, did an MRI last Sunday and it looks like a new metastasis on my hip bone . The onco is going to check with colleagues to see if radiotherapy is an option and I will discuss other treatment options next time I see him. In the meantime I am off to Germany this weekend to collect and have a 1st shot of a personalised vaccine, let's hope that helps .

Hi Cecile. Hope you are doing well. Im sitting at the hospital right now about to get avastin plus lonsurf. This is for my dad. Was just reading the thread. And literally like reading your stories it’s like reading our story. Very sad that the cancer is the reason we all are here talking to each other. But also it’s nice to meet people who are in same situation where you can get little more hope fighting this evil. I really hope every one here guys who needs to get well soon I really hope that will be very soon. 

and also was wondering any updates on the vaccine you planning to get. And generally how you feel