Please feel free to read, share your thoughts, your stories and connect with others!
Posts: 197
Joined: Sat Nov 26, 2011 10:27 pm


Postby kpjpmom » Sat Jan 23, 2016 10:57 am

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
DX March 2011 stg 3 cc
Kidney cancer May 2011
Folfox 6months (12 rnds)
It's Back! October 2012 colon resection, kidney removed.FOLFIRI/Erbitux starts Jan.2013
Completed FOLFIRI June 2013, Erbitux continues
March 2015 Met to spine. Radiation 15 treatments
Folfri, 5fu dropped after 3x, Erbitux and Iri continued CEA rising. Moved to
Folfox, Xeloda,Avastin until Feb. 2016 oxilap. Neuropathy returns.
Xeloda,Avastin continues.

Posts: 69
Joined: Tue Jul 08, 2014 1:37 am

Re: Lonesurf

Postby Lund5505 » Sat Jan 23, 2016 4:41 pm

I too would like to hear any experiences with this as this will most likely be my next step
10/2013 dx female @54 stage IV innumerable liver mets
CEA 2600 kras wild MSS
11/2013 folfox avastin 8 rounds
6/2014 neuropathy development CEA 9.8 but won't go lower
8/2014 colon resection
11/2014 folfiri and cetuximab 9 rounds CEA 1700
4/2015 cetuximab only 4 rounds CEA down to 20 but won't go lower
7/2015 chemo break getting too toxic
10/2015 xeloda 3 rounds CEA 800 then 300 then back up to 900
1/2016 irinotecan CEA 1800 at start 2/2016 too toxic
4/2016 Cea 3200
Hospice recommended but I'm not ready yet

User avatar
Posts: 10285
Joined: Sun Feb 10, 2008 6:00 pm

Re: Lonesurf

Postby CRguy » Sat Jan 23, 2016 5:52 pm

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 :shock: (( aka TAS-102 ))


Caregiver x 4
Stage IV A rectal cancer/lung met
14 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

Posts: 213
Joined: Thu Sep 13, 2012 8:52 pm

Re: Lonesurf

Postby momof3 » Sun Jan 24, 2016 6:31 pm

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.
Husband was 46 when diagnosed stage 4 aug 2012
folfox and avastin ... then surgery april 2013
mets only to paraaortic nodes
Mets to femurs and spine found Nov 2013

Posts: 12
Joined: Tue May 13, 2014 9:08 pm

Re: Lonesurf

Postby fwilkins » Tue Jan 26, 2016 1:51 am

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!

Posts: 49
Joined: Tue Nov 24, 2015 9:31 pm

Re: Lonesurf

Postby Dana123 » Thu Jan 28, 2016 4:07 pm

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.


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
48 yo DH diagnosed/resection (rectosigmoid at 18 cm), 8/15
IIIB--T3, N2a (6/24), moderately differentiated, genetic testing--negative for mutations
CEA pre-surgery 3.5
FOLFOX began 8/15
Oxaliplatin dosage reduced at Round 8 due to WBC issue, began Neulasta for that
Oxaliplatin ended at Round 9 due to persistent neuropathy

User avatar
H is for Hawk
Posts: 103
Joined: Wed May 20, 2015 4:51 pm
Location: eastern Pennsylvania

Re: Lonesurf

Postby H is for Hawk » Mon Feb 01, 2016 7:35 pm

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.
H is for Hawk (57)
10/14 L. hemi-colectomy 3 x 4 x 1 cm tumor, 13/14 lymph nodes pos. pT4a N2B M0 stage 3 MSS
11/14 - 4/15 12x FOLFOX
5/15 PET scan: 2.5 x 1.5 cm l. colon lesion, peri surface lesion SUV 2.4, adenocar., KRAS wd, BRAF V600E mut
6/15 HIPEC
9/15 Pleural lining & liver mets, CA 19-9: 6000
10/15 Vectibix Tafinlar Mekinist
11/15 1500
1/16 200
2/16 100, add Lentinan
3/16 122
6/16 4500
7/16 20,000, CT scan - three new liver mets
8/16 6700, FOLFIRI
9/16 4900, CT scan - two new liver mets
10/16 2255 vinorelbine

Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”

Who is online

Users browsing this forum: Google [Bot] and 1 guest