Lonsurf

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claz1956
Posts: 2
Joined: Wed May 21, 2014 5:59 pm

Lonsurf

Postby claz1956 » Mon May 09, 2016 3:54 pm

My husband started taking Lonsurf last week. So far he isn't feeling any side effects at all. He takes it 5 days, off 2 ,5 more on ,then off for 2 weeks before starting over. Anyone else taking it?

Nik Colon

Re: Lonsurf

Postby Nik Colon » Mon May 09, 2016 10:56 pm


Orissia
Posts: 22
Joined: Wed May 04, 2016 10:20 am

Re: Lonsurf

Postby Orissia » Tue May 10, 2016 4:49 am

I'll be starting Lonsurf soon, just waiting for the tablets to arrive at the pharmacy. My oncologist said none of his patients on it have suffered any side effects, but on a Facebook group I'm on most on it suffer fatigue.
Stage 4 colon cancer w. mets to liver
No surgeries, primary tumour & mets still in situ
MSS, KRAS wild type (normal)
2014 Folfox w. Avastin
2015 Folfiri w. Zaltrap
2016 Erbitux fail
June 2016 SIRT done; approved for TAS 102/ Lonsurf
Looking to participate in MSS immuno trial when they start recruiting, if Lonsurf fails


Married since 2007 with a 8 year old daughter.

User avatar
meatie
Posts: 419
Joined: Wed Aug 20, 2014 8:13 am
Location: San Jose, CA

Re: Lonsurf

Postby meatie » Wed Aug 17, 2016 7:23 pm

Anyone had good results with lonsurf yet?
Mother DX @59 8/14
cln+lvr res 9/14, stage 4
FOLOX+Avs 12-rd 10/14 to 4/15
Reoccurrence, KRAS mutant 11/15
Folfiri 18-rds 11/15-8/16
FOLFIRI with Ramicirumab 28-rds 8/17-9/18
Regorafenib 10/18-10/19
Lonsurf 10/19 onward
Folfox rechallenge 05/20
Regonivo (Opdivo+Stivarga) 08/20
External Peace 09/12/2022

Regan
Posts: 249
Joined: Sun Mar 02, 2014 11:58 pm

Re: Lonsurf

Postby Regan » Mon Aug 22, 2016 11:07 pm

My DH tried. First round sucked what strength he had...
Secon dose was depleted by one pill morning and evening.
All tumors grew
Then hospice
Now he's gone
Hope toy have better results
DH dx 7/12
Stg IV RC liver mets
11/12 Hrt Attk by Folfox
1/13 Liver resct
4/13 LAR-Temp
NED
1/14 revrsal
4/14 Hrnia surg 4/14
1/15 local recur, liver, lung, aortocaval region of retroperitoneum, anterior wall of distal abdominal aorta
2/15 Irinotecan
1/16 Lonsurf (fail--just zapped. Strength)
Aug 10, 2016 at rest

Pita
Posts: 637
Joined: Wed Feb 10, 2016 3:48 pm
Location: So Calif

Re: Lonsurf

Postby Pita » Mon Aug 22, 2016 11:25 pm

Regan, I'm so sorry for your loss. Prayers and hugs to you, family and friends...
70yo Fem DX: 1/21/2016 RC Stage IV-Nodules lungs
MSS-Kras Wild-Lynch Synd Neg-Lung Biopsy 1/27/16-Port 2/19/16
MRI 7/7/16 Endometrial polyp found, watching LAR 7/19/16, No Ileostomy, Stage ypT3 N1
CT 11/7/16: Most mets stable,1 shrunk,1 new??
CEA Tests: 1/21/16=20, 12/22/16=5.3, 1/20/17=4.8, 2/15/17=6.2
9/20/16-1/24/17 Folfuri & Avastin
#10/10 Done
PET/CT 2/10/16-1/31/17=Some shrunk & growth to 2, Avastin failing ??? :evil:
2/21/17 Folfuri & Avastin

midlifemom
Posts: 1358
Joined: Wed Jan 15, 2014 10:58 am
Location: NJ

Re: Lonsurf

Postby midlifemom » Thu Sep 08, 2016 6:13 pm

Orissia wrote:I'll be starting Lonsurf soon, just waiting for the tablets to arrive at the pharmacy. My oncologist said none of his patients on it have suffered any side effects, but on a Facebook group I'm on most on it suffer fatigue.


Orissia,
Did you ever start the Lonsurf?
Whats your experience been on it?
Best of luck!
Stage 3 cc - dx Jan '14 age 53, cea 2.9
t2n2m0, KRAS mutant, MSS
Folfox Feb - Aug '14
Nov '14 cea 27.7 -2 liver masses
Dec '14 left lobectomy and HAI
Jan '15 FUDR and FOLFIRI
Aug '15 fudr done, liver clear, add avastin for lungs. Cea 4.3
Feb '16 CEA rising
May '16 2 wk break then drop Iri for 6 weeks.
Jul '16 cancer grew, constricted main bile duct. Stent inserted. On break till jaundice clears. CEA climbing. Doing reduced Folfox. Allergic to Oxali.
Sep'16 chemo failed. Trial or hospice?

midlifemom
Posts: 1358
Joined: Wed Jan 15, 2014 10:58 am
Location: NJ

Re: Lonsurf

Postby midlifemom » Thu Sep 08, 2016 6:18 pm

claz1956 wrote:My husband started taking Lonsurf last week. So far he isn't feeling any side effects at all. He takes it 5 days, off 2 ,5 more on ,then off for 2 weeks before starting over. Anyone else taking it?



Claz,
Can you tell us how your husband is making out?
Is he still on the Lonsurf?
This might be my next treatment, so looking for info.
Thanks! Best wishes!
Stage 3 cc - dx Jan '14 age 53, cea 2.9
t2n2m0, KRAS mutant, MSS
Folfox Feb - Aug '14
Nov '14 cea 27.7 -2 liver masses
Dec '14 left lobectomy and HAI
Jan '15 FUDR and FOLFIRI
Aug '15 fudr done, liver clear, add avastin for lungs. Cea 4.3
Feb '16 CEA rising
May '16 2 wk break then drop Iri for 6 weeks.
Jul '16 cancer grew, constricted main bile duct. Stent inserted. On break till jaundice clears. CEA climbing. Doing reduced Folfox. Allergic to Oxali.
Sep'16 chemo failed. Trial or hospice?

jdepp
Posts: 488
Joined: Sun Sep 28, 2008 7:53 pm

Re: Lonsurf

Postby jdepp » Thu Sep 08, 2016 8:19 pm

I'm taking Lonsurf. The side effects aren't horrible, but I did set an all-time personal record low in ANC: 0.24.

Watch out for neutropenia.
Colon dx 08 @ 41 Poorly diff. 12+ liver mets, 19/28 LN
Colon rsx /14 x Folfox-Erbitux 08-09
PVE / Liver rsx 09
Lung & LN mets 10
Folfiri, Xeloda, Avastin 10-13
Xelox, Erbitux, UFUR, TS-1, Oxi, Lonsurf 14-16
Stivarga & TIL trial 16
Brain lesion, RO688 trial 18

midlifemom
Posts: 1358
Joined: Wed Jan 15, 2014 10:58 am
Location: NJ

Re: Lonsurf

Postby midlifemom » Thu Sep 08, 2016 8:40 pm

Thanks jdep for response.
Have you had a ct scan yet to determine its effectiveness?
Stage 3 cc - dx Jan '14 age 53, cea 2.9
t2n2m0, KRAS mutant, MSS
Folfox Feb - Aug '14
Nov '14 cea 27.7 -2 liver masses
Dec '14 left lobectomy and HAI
Jan '15 FUDR and FOLFIRI
Aug '15 fudr done, liver clear, add avastin for lungs. Cea 4.3
Feb '16 CEA rising
May '16 2 wk break then drop Iri for 6 weeks.
Jul '16 cancer grew, constricted main bile duct. Stent inserted. On break till jaundice clears. CEA climbing. Doing reduced Folfox. Allergic to Oxali.
Sep'16 chemo failed. Trial or hospice?


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