Lonsurf- anyone currently taking?

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Amarie123
Posts: 34
Joined: Wed Nov 14, 2018 6:46 am

Lonsurf- anyone currently taking?

Postby Amarie123 » Mon Aug 26, 2019 10:51 pm

Hi Everyone,

I haven’t posted in a while as this year has been a long one with lots of surprises.

I was initially diagnosed as stage III but that changed to stage IV a few months ago when they discovered Mets to my liver and lungs. There have been complications also, in that I am one of the .3% that can’t tolerate Folfox as the 5FU caused vasospasms to the extent that it caused changes in my heart rhythm and would likely escalate to a heart attack (I was hospitalized for infusions plus heart meds to no avail). Next up was IROX (oxaliplatin and irinotican), which worked initially but then stopped. I also have a KRAS mutation so am not a candidate for immunotherapy. So, I was enrolled in a clinical trial of radiation and Lonsurf (also known as TAS 102). It just ended so I don’t know the results yet but if there was any success my onc plans to keep me on the Lonsurf.
Has anyone else been on Lonsurf and had positive results? I’m hopeful but also worried because if it doesn’t work, I don’t have many, if any, options left. I know there are some older posts on this topic but I was hoping for some more recent experiences if there are any to share. Thanks in advance for any input!

Amarie123
Posts: 34
Joined: Wed Nov 14, 2018 6:46 am

Re: Lonsurf- anyone currently taking?

Postby Amarie123 » Wed Aug 28, 2019 6:45 pm

Anyone?

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ANDRETEXAS
Posts: 620
Joined: Fri Feb 14, 2014 11:01 am
Location: Austin, Texas (University of Tennessee alumnus)

Re: Lonsurf- anyone currently taking?

Postby ANDRETEXAS » Thu Aug 29, 2019 1:10 am

All I can state is that a friend of mine with rectal cancer was on Lonsurf and tolerated it very well without many terrible side effects. I was only on FOLFOX, so can't give you any personal experiences. She was on it for six or so months and was switched to something else that I cannot recall. Sorry I can't tell you more. Andre
2014
2/10 - Colon resect
2/13 - DX- Stage IIIb
6 of 18 lymph nodes cancerous
3/7 - Port placed
3/11 - FOLFOX (12 rds w/full oxi)
8/14 - Chemo finish
8/25 - CT- Inc
9/5 - clean PET
12/10- clean CT
2015
3/2 - Clean colonoscopy & port removed
3/4- clean CT
9/21- clean CT
2016
3/23- clean CT
2017
2/22- clean CT
2018
3/21 - clean CT
4/11 - clean colonoscopy
2019
3/11 - clean CT
9/23 - Five-year release - Annual visits now !
Next colonoscopy - 2023

ONE DAY AT A TIME !

Amarie123
Posts: 34
Joined: Wed Nov 14, 2018 6:46 am

Re: Lonsurf- anyone currently taking?

Postby Amarie123 » Thu Aug 29, 2019 6:50 pm

ANDRETEXAS wrote:All I can state is that a friend of mine with rectal cancer was on Lonsurf and tolerated it very well without many terrible side effects. I was only on FOLFOX, so can't give you any personal experiences. She was on it for six or so months and was switched to something else that I cannot recall. Sorry I can't tell you more. Andre

Thank you for your response. From research I’ve done online there aren’t many people who’ve been on it or who’ve been on it for a long time. Since I can’t take Folfox due to heart toxicity and IROX stopped working, I’m anxious that this drug won’t do much more.

Rock_Robster
Posts: 341
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Lonsurf- anyone currently taking?

Postby Rock_Robster » Fri Aug 30, 2019 7:37 pm

Hi amarie,

I’m sorry I don’t know a lot about Lonsurf, however have you investigated Stivarga (Regorafenib) with your oncologist? There is some interesting research underway at the moment using lower doses to get a response with fewer side effects (ReDOS), and also trials combining this with immunotherapy in MSS patients (REGONIVO) that may apply to you.

Best of luck,
Rob
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets, resectable
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response, TRG 3
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & stoma reversal

Amarie123
Posts: 34
Joined: Wed Nov 14, 2018 6:46 am

Re: Lonsurf- anyone currently taking?

Postby Amarie123 » Sun Sep 01, 2019 1:52 am

Rock_Robster wrote:Hi amarie,

I’m sorry I don’t know a lot about Lonsurf, however have you investigated Stivarga (Regorafenib) with your oncologist? There is some interesting research underway at the moment using lower doses to get a response with fewer side effects (ReDOS), and also trials combining this with immunotherapy in MSS patients (REGONIVO) that may apply to you.

Best of luck,
Rob


Hi Rob,

I have read about Stiverga and it seems to be similar to Lonsurf. If I don’t have success with this I will ask my oncologist about it. Unfortunately I’m not a candidate for immunotherapy but the chemo pills are and option. Thank you for the suggestion.

boxhill
Posts: 355
Joined: Fri Apr 06, 2018 11:40 am

Re: Lonsurf- anyone currently taking?

Postby boxhill » Tue Sep 03, 2019 6:59 pm

Not terribly helpful, unfortunately, but a KRAS mutation does not disqualify you from immunotherapy, at least not from Keytruda. I would guess you are MSS, which would be the problem.

Sorry, I don't know anything much about Lonsurf or Stivarga, other than that my onc mentioned them as something we might try if I didn't respond to Keytruda. (Folfox didn't work for me, and my KRAS mutation precludes Erbitux and Vectibix, just as yours probably does.)

I do know that there is some research out there concentrating on KRAS mutations, and there are trials. I hope the one you were just on worked for you.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/4/18 FOLFOX
Neulasta 6/28
7/9/18 CT NED
11/20/18 CT NED. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met? and 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/5/19 Triphasic CT LN and spleen normal, Liver node stable
6/28/19 Pause Keytruda, predisone for joint pain
7/31/19 Restart Keytruda
9/10/19 CT stable

Rock_Robster
Posts: 341
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Lonsurf- anyone currently taking?

Postby Rock_Robster » Tue Sep 03, 2019 9:31 pm

Amarie123 wrote:
Rock_Robster wrote:Hi amarie,

I’m sorry I don’t know a lot about Lonsurf, however have you investigated Stivarga (Regorafenib) with your oncologist? There is some interesting research underway at the moment using lower doses to get a response with fewer side effects (ReDOS), and also trials combining this with immunotherapy in MSS patients (REGONIVO) that may apply to you.

Best of luck,
Rob


Hi Rob,

I have read about Stiverga and it seems to be similar to Lonsurf. If I don’t have success with this I will ask my oncologist about it. Unfortunately I’m not a candidate for immunotherapy but the chemo pills are and option. Thank you for the suggestion.

No problem at all. Only reason I suggest it now is that I understand using the dose-escalation strategy, it seems Stivarga can potentially work better and for longer than Lonsurf with fewer side effects. I think there was also some suggestion it is more effective if used before Lonsurf, but I don’t have a good source for this.

If your oncologist is feeling creative, it does also open up the possibility to combine with a PD1 inhibitor such as Opdivo (understand you’re not eligible for PD1 alone due to MSS status, but this would be heading into the experimental realm based on some early trials).
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets, resectable
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response, TRG 3
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & stoma reversal

Amarie123
Posts: 34
Joined: Wed Nov 14, 2018 6:46 am

Re: Lonsurf- anyone currently taking?

Postby Amarie123 » Sun Sep 15, 2019 8:37 am

boxhill wrote:Not terribly helpful, unfortunately, but a KRAS mutation does not disqualify you from immunotherapy, at least not from Keytruda. I would guess you are MSS, which would be the problem.

Sorry, I don't know anything much about Lonsurf or Stivarga, other than that my onc mentioned them as something we might try if I didn't respond to Keytruda. (Folfox didn't work for me, and my KRAS mutation precludes Erbitux and Vectibix, just as yours probably does.)

I do know that there is some research out there concentrating on KRAS mutations, and there are trials. I hope the one you were just on worked for you.


Thanks for replying. I’ve gotten some more clarification (I am not terribly scientific in nature so it takes a bit to process this info) and yes, I am also MSS which is the issue. The trial I was on so far seems to have had a positive effect, at least on the liver. It didn’t change in size which is what they apparently expect to see initially, with shrinkage over time - possibly even up to a year. The lung lesions doubled in size, although with the exception of one, they are all still less than 1cm. So the hope is with more time the Lonsurf will have some effect on them. My onc is working with insurance to get them to approve the addition of Avastin (currently they don’t cover the two drugs together but he will appeal), as he said there is “soft data” on the combo that is promising. Thanks for your input!

jep
Posts: 174
Joined: Sun Jun 11, 2017 7:45 pm

Re: Lonsurf- anyone currently taking?

Postby jep » Fri Oct 04, 2019 1:34 pm

My husband's oncologist is thinking about using Lonsurf to "plug the gap" while we wait for a spot to open up in a clinical trial . . . I've read through this thread and I'm wondering if anyone has any updates or further information.
Thank you all,
jep
Wife of DH (47) Stage IV CC on 5/16/17
T Loc: recto-sigmoid
T type: Adenocarcinoma
T size: 7.4 cm
T grade: G3
TNM code: T3N2M1
Pos LNs: 8 out of 20
Baseline CEA value: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps removed
PET 10/17/18: 3 pos LNs
Irinotecan + Vectobix (started in 11/18)
CEA: 1.7 (2/19)
Xeloda + radiation (5/19)
Surgery scheduled: 8/21/19 (surgery aborted)

Amarie123
Posts: 34
Joined: Wed Nov 14, 2018 6:46 am

Re: Lonsurf- anyone currently taking?

Postby Amarie123 » Fri Oct 04, 2019 2:01 pm

I just finished my second round of Lonsurf two weeks ago and start the third one soon. So far it’s been fine, with the only side effects being fatigue, minor diarrhea and mouth sores. The mouth sores were tough but I was given a prescription which seemed to help. They will do scans after the third cycle ends I believe and then assess further from there. Sorry I don’t have much more to offer.

jep
Posts: 174
Joined: Sun Jun 11, 2017 7:45 pm

Re: Lonsurf- anyone currently taking?

Postby jep » Fri Oct 04, 2019 3:17 pm

Thank you Amarie... I did a “lonsurf” search in colon talk, and your thread was the only that popped up....how long is a typical cycle?
Thanks!
jep
Wife of DH (47) Stage IV CC on 5/16/17
T Loc: recto-sigmoid
T type: Adenocarcinoma
T size: 7.4 cm
T grade: G3
TNM code: T3N2M1
Pos LNs: 8 out of 20
Baseline CEA value: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps removed
PET 10/17/18: 3 pos LNs
Irinotecan + Vectobix (started in 11/18)
CEA: 1.7 (2/19)
Xeloda + radiation (5/19)
Surgery scheduled: 8/21/19 (surgery aborted)

Amarie123
Posts: 34
Joined: Wed Nov 14, 2018 6:46 am

Re: Lonsurf- anyone currently taking?

Postby Amarie123 » Fri Oct 04, 2019 3:52 pm

A Lonsurf cycle is about 28 days, give or take.
5 days on, 2 days off, 5 days on, 2 weeks off. Bloodwork is then checked and if WBC count is ok, the cycle starts again.

jep
Posts: 174
Joined: Sun Jun 11, 2017 7:45 pm

Re: Lonsurf- anyone currently taking?

Postby jep » Fri Oct 04, 2019 4:21 pm

Thank you for that info!!
Wife of DH (47) Stage IV CC on 5/16/17
T Loc: recto-sigmoid
T type: Adenocarcinoma
T size: 7.4 cm
T grade: G3
TNM code: T3N2M1
Pos LNs: 8 out of 20
Baseline CEA value: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps removed
PET 10/17/18: 3 pos LNs
Irinotecan + Vectobix (started in 11/18)
CEA: 1.7 (2/19)
Xeloda + radiation (5/19)
Surgery scheduled: 8/21/19 (surgery aborted)

Amarie123
Posts: 34
Joined: Wed Nov 14, 2018 6:46 am

Re: Lonsurf- anyone currently taking?

Postby Amarie123 » Fri Oct 04, 2019 6:01 pm

Any time! I hope your husband has some success with it!


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