Lonesurf

[kpjpmom]

Anyone have any experience with this drug? My oncologist is going to try this drug next as he does not the nueropathy to get worse in my hands and feet. What are the side effects that you have experienced? I am a 3 x cc patient. Current CEA is at 839. I have an inoperable tumor in my spine at the tailbone.
Thanks for any help
Kpjpmom

[Lund5505]

I too would like to hear any experiences with this as this will most likely be my next step

[CRguy]

You may wish to check out this search list from a few folks who have talked about it ...... BUTT
I am assuming you meant Lonsurf (( aka TAS-102 ))

search.php?keywords=lonsurf&fid%5B0%5D=1

Cheers
CRguy

[momof3]

My husband started it the beginning of January. He took 4 pills a day for 5 days, had a break for 4 or 5 days, took them again for 5 days and then a longer break. He is due to start again on Tuesday but is in the hospital so I'm not sure what's going to happen.

He also has bone mets...only bone mets. He no longer wants to know what his Cea is so I don't find out, but in looking over some other labs with the nurse I just saw it...ugh. Over 1000. He's in a lot of pain. Since taking lonsurf he's needed three blood transfusions...getting one right now. His wbc is 1.2 right now and he's needed more calcium infusions than I can keep count of. He's hospitalized because when he came in on Friday for calcium, he had a 102 temp. With the low wbc they want to rule out infections. I think it's tumor fever and I also think the calcium is dropping because of the cancer in the bones not because of chemo but who knows. I guess it's way too soon to say if the lonsurf is helping or not but I worry that we are wasting time with it and maybe something else would be more effective. Very hard to say because there just isn't a lot of info out there...esp for someone with bone mets.

I wish I had something positive to offer you, but wanted to share our experience so far.
Good luck to you.

[fwilkins]

My daughter received Lonsurf for 3 months and had progression. Her oncologist at MDA informed us that out of 700 something patients only 35 responded. I would never want to discourage anyone from trying a chemo in which they might be a responder, but felt I needed to share our experience. On the positive side, it was a very easy chemo for her. She had to travel to Denver from Houston to get the Lonsurf because it had not been approved at that time.Her CEA continued to rise during treatment, but because the doctors said that CEA did go up on some patients, but they were stable she completed the full 3 months.For us, and many others, the CEA was a good indicator that she wasn't responding. My daughter wishes that she didn't stick with it as long as she did so be very aware of your CEA readings. Wishing you the best in your decision!

[Dana123]

I suggest you also go to the Blue Hope Clinic facebook page of colontown.org (part of Chris4Life.org) as there are multiple people on there taking Lonsurf and discussing it. Colon Cancer Alliance facebook page also has discussions.

http://www.chris4life.org/colontown/

Here's some info on Lonsurf:
ttp://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm463650.htm and https://www.taihooncology.com/us/newsroom/press-releases/Taiho-Oncology-Inc-Announces-FDA-Approval-of-LONSURF-for-Refractory-Metastatic-Colorectal-Cancer

[H is for Hawk]

In the phase 3 clinical trial, overall survival for those who received Lonsurf was 7.1 months compared with 5.3 months with the placebo. The median progression free survival in the Lonsurf arm was 2 months versus 1.7 months with the placebo.