Lonsurf

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a_mwalter
Posts: 3
Joined: Tue Apr 11, 2017 7:10 pm
Facebook Username: Andrea W Ballard

Lonsurf

Postby a_mwalter » Sat Apr 29, 2017 10:09 pm

My husband just started Lonsurf. Five days in and he has had nausea and most recently blisters on his hands and tightness in his chest (could be anxiety). There is not much out there on Lonsurf and we are the first patient of our oncologists to be treated with Lonsurf. Headed back to MD Anderson soon. Just curious if anyone else is further into Lonsurf treatment.
8/2011- Diagnosed, colon resection
9/2011- 5-FU
1/2012- Liver Ablation (4/12, 7/12, 4/13, 12/14, 8/16)
9/13- Campostar (CPT-11)
12/13- Xeloda
4/14- Abdominal surgery
12/14- Lung resection
1/15- Stivarga
7/15- Campostar again
2/16- Lung resection
5/16- Abdominal surgery
1/17- Y90 procedures
4/17- Lonsurf

Lee
Posts: 5666
Joined: Sun Apr 16, 2006 4:09 pm

Re: Lonsurf

Postby Lee » Sat Apr 29, 2017 11:00 pm

The fact that he has tightness in his chess, PLEASE put a call into his Onc or PCP NOW. IF this persist for a short period of time. Go to the ER ASAP! Could be nothing other than drug related. Could be something far more serious. If it get worse, ER ASAP.

I did not take Lonsurf, butt I believe many people on this board did. Please know, weekends people are busy and sometimes have a life. If you do not get a lot of response by Monday, bump it up. If you don't I will. Hope it get better for him.

I do HIGHLY recommend ginger for nausea. Ginger snap cookies, Ginger ale soda, ginger root, etc.

Please give us an update when you can. Again if tightness continue, ER ASAP!

Hope all works out well for your husband.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

ebv60
Posts: 45
Joined: Thu Jan 24, 2013 1:22 pm

Re: Lonsurf

Postby ebv60 » Mon May 01, 2017 9:46 pm

Hi ..Caretaker for my wife , she has been Stage 4 now for about 5 years now as you can see by her signature, She started Losurf Jan. of this year. Her CEA is a good marker for her it when down 2 points from 17.3 to 15.0 in March. No CT scan yet while on Lonsurf . She gets tried and not much of an appetite, low blood count, plus the diarrhea thing, some loss of hair too. otherwise side effects haven`t been terrible.
The next scan will tell if Lonsurf is helping ?????Should be coming up , her last scan was in late Dec.
to DW 6/12 stage 4
6/12 colon resection, liver Mets
Folfox & Folfiri till 4/13
liver resection Mayo 5/13 Clear margins
mop up chemo
NED till 9/14
cancer complete hysterectomy,
CEA climbing 12/14
1/15 scans, tumors return
1/15 Mayo for surgery; need shrinkage before surgery
Folfiri w Erbitux
break over Christmas, rash from Erbitux
1/16 scan tumors growing, liver, lungs, lymph nodes involvement
Folfiri w Avastin 1/16
Stivarga 6/16
lonsurf 1/17
Scan 6/17 tumors growing.
At peace 7/17

.jim.
Posts: 12
Joined: Sat Jan 28, 2017 10:12 pm

Re: Lonsurf

Postby .jim. » Fri May 05, 2017 3:44 pm

My wife has been on lonsurf for four months. Initially she didn't have any side effects.

Right after she started the lonsurf, she also had DEBIRI TACE. First lobe went OK... second lobe was very painful and she's been weak with an intermittent low-grade fever (ibuprofen brings it down).

Side effects of lonsurf or the tace have been: nausea, fatigue, intermittent low-grade fever, white blood cell counts up and down, red blood cell counts low, liver panel mostly outside 'normal'. CEA going way way up (last was 690?).

Getting scanned next week so until then, who knows what's going on inside?

Previous to this doublet treatment, she's had very very minimal side effects (practically none with FOLFIRI+Avastin).
husband to DW stage IV MSS KRAS-wt BRAF-wt
12-2014 colon resection 2/14 lymph nodes positive
1-2015 cat scan shows liver mets
2-2015 folfox+vectibix
6-2015 remission
11-2015 recurrence to liver
12-2015 switched to folfiri+avastin
5-2016 cea rising, so y90-spheres
7-2016 second half of liver gets y90-spheres
10-2016 cat scan shows liver mets progressing
12-2016 pet scan shows activity in liver and new mets in lungs
1-2017 cea rising; chemo folifiri-avastin stopped
2-2017 DEBIRI TACE and started lonsurf

ebv60
Posts: 45
Joined: Thu Jan 24, 2013 1:22 pm

Re: Lonsurf

Postby ebv60 » Wed May 10, 2017 11:12 am

I would to add to my wife side effects , she does a lot of coughing now ...did have the coughing the first couple of cycles.. not sure what's up with the coughing ???
Has anyone else had the coughing too???

Jim ..If you could post on your wife`s scan ??? Hoping is a good report for her
to DW 6/12 stage 4
6/12 colon resection, liver Mets
Folfox & Folfiri till 4/13
liver resection Mayo 5/13 Clear margins
mop up chemo
NED till 9/14
cancer complete hysterectomy,
CEA climbing 12/14
1/15 scans, tumors return
1/15 Mayo for surgery; need shrinkage before surgery
Folfiri w Erbitux
break over Christmas, rash from Erbitux
1/16 scan tumors growing, liver, lungs, lymph nodes involvement
Folfiri w Avastin 1/16
Stivarga 6/16
lonsurf 1/17
Scan 6/17 tumors growing.
At peace 7/17

KElizabeth
Posts: 400
Joined: Sat Oct 31, 2015 12:41 pm
Facebook Username: KElizabeth
Location: Omaha

Re: Lonsurf

Postby KElizabeth » Wed May 10, 2017 1:14 pm

Following.
I am interested to know if anyone has had a response to this.
Fingers crossed for all of you going this course.
Female age 39- ,2 teens.
Colon Cancer - DX March 2013
Age 34 at DX - Stage III B
Resection surgery -May 2013
FOLFOX - June, 2013 to Sept, 2013
5FU plus leukavorin Sept, 2013 to Dec, 2013
METs liver and lungs discovered Sept, 2015
KRAS - MSS
FOLFIRI plus Avastin - Sept, 2015 - July 2017
Durvalumab and Cediranib Sept 2017 Dec 17
FOLFOX with desensitization protocol - current

jhocno197
Posts: 817
Joined: Mon May 11, 2015 9:33 pm

Re: Lonsurf

Postby jhocno197 » Wed May 10, 2017 10:06 pm

Anyone taking Lonsurf, make sure they are checking your blood counts very regularly!
DH - dx Dec 2014, stage IV with bladder & peritoneal involvement - non-resectable
Colostomy
FOLFOX failed
FOLFIRI failed
Tumor actually distending pelvic skin
Not a candidate for last-ditch pelvic exenteration
Stivarga finally begun 2/19/16
Tumor growing/fungating
Lonsurf started 11/18/16
Died 3/10/17

User avatar
Hannah Faulkner
Posts: 29
Joined: Tue Feb 14, 2017 3:14 am

Re: Lonsurf

Postby Hannah Faulkner » Thu May 11, 2017 6:15 am

I think Lonsurf is reacting with other drugs causing trouble, nausea is the most likely side effect. Thanks for the blood count info

.jim.
Posts: 12
Joined: Sat Jan 28, 2017 10:12 pm

Re: Lonsurf

Postby .jim. » Fri May 12, 2017 9:10 pm

ebv60 wrote:Jim ..If you could post on your wife`s scan ??? Hoping is a good report for her


Scan came back... more involvement everywhere (lung, liver, lymph nodes) although the biggest tumors (liver/lung) are necrotic in the center. I guess that's indicative that the lonsurf is kind of working, and the debiri treatment might have been efficacious.

Got a call on Thursday from City of Hope for an invite to the enadenotucirev trial that DK37 missed... well her bilirubin was too high, so 'go fish'. :(

Red blood cell counts are a bit wacky and liver panel is 'close to normal' except for her bilirubin which is a tad high.

Hoping for miracles next week at the doc's office! Gotta get that liver stabilized so she can qualify for some interesting trials. The doc will no doubt let us know how he thinks the current regimen is performing.
husband to DW stage IV MSS KRAS-wt BRAF-wt
12-2014 colon resection 2/14 lymph nodes positive
1-2015 cat scan shows liver mets
2-2015 folfox+vectibix
6-2015 remission
11-2015 recurrence to liver
12-2015 switched to folfiri+avastin
5-2016 cea rising, so y90-spheres
7-2016 second half of liver gets y90-spheres
10-2016 cat scan shows liver mets progressing
12-2016 pet scan shows activity in liver and new mets in lungs
1-2017 cea rising; chemo folifiri-avastin stopped
2-2017 DEBIRI TACE and started lonsurf

.jim.
Posts: 12
Joined: Sat Jan 28, 2017 10:12 pm

Re: Lonsurf

Postby .jim. » Fri May 12, 2017 9:13 pm

ebv60 wrote:I would to add to my wife side effects , she does a lot of coughing now ...did have the coughing the first couple of cycles.. not sure what's up with the coughing ???
Has anyone else had the coughing too???


My wife has the coughing as well. Since her lonsurf treatment coincided with the allergy season, wasn't sure if it was allergies or not.

Everything's done blooming here but the intermittent cough remains.

Lonsurf.

QED

:)
husband to DW stage IV MSS KRAS-wt BRAF-wt
12-2014 colon resection 2/14 lymph nodes positive
1-2015 cat scan shows liver mets
2-2015 folfox+vectibix
6-2015 remission
11-2015 recurrence to liver
12-2015 switched to folfiri+avastin
5-2016 cea rising, so y90-spheres
7-2016 second half of liver gets y90-spheres
10-2016 cat scan shows liver mets progressing
12-2016 pet scan shows activity in liver and new mets in lungs
1-2017 cea rising; chemo folifiri-avastin stopped
2-2017 DEBIRI TACE and started lonsurf

.jim.
Posts: 12
Joined: Sat Jan 28, 2017 10:12 pm

Re: Lonsurf

Postby .jim. » Fri May 12, 2017 9:24 pm

Hannah Faulkner wrote:I think Lonsurf is reacting with other drugs causing trouble, nausea is the most likely side effect. Thanks for the blood count info


If one reads the lonsurf 'drug facts' sheet, the manufacturer advises a blood test immediately after the second two-week 'on' cycle. (Day 15)

Not sure who reads those things, though.
husband to DW stage IV MSS KRAS-wt BRAF-wt
12-2014 colon resection 2/14 lymph nodes positive
1-2015 cat scan shows liver mets
2-2015 folfox+vectibix
6-2015 remission
11-2015 recurrence to liver
12-2015 switched to folfiri+avastin
5-2016 cea rising, so y90-spheres
7-2016 second half of liver gets y90-spheres
10-2016 cat scan shows liver mets progressing
12-2016 pet scan shows activity in liver and new mets in lungs
1-2017 cea rising; chemo folifiri-avastin stopped
2-2017 DEBIRI TACE and started lonsurf

jhocno197
Posts: 817
Joined: Mon May 11, 2015 9:33 pm

Re: Lonsurf

Postby jhocno197 » Sat May 13, 2017 10:11 am

.jim. wrote:
Hannah Faulkner wrote:I think Lonsurf is reacting with other drugs causing trouble, nausea is the most likely side effect. Thanks for the blood count info


If one reads the lonsurf 'drug facts' sheet, the manufacturer advises a blood test immediately after the second two-week 'on' cycle. (Day 15)

Not sure who reads those things, though.


Yes, but in some cases that is not frequent enough. It wasn't frequent enough for my husband, whose counts began to drop rapidly & testing only on day 15 could be too late.
DH - dx Dec 2014, stage IV with bladder & peritoneal involvement - non-resectable
Colostomy
FOLFOX failed
FOLFIRI failed
Tumor actually distending pelvic skin
Not a candidate for last-ditch pelvic exenteration
Stivarga finally begun 2/19/16
Tumor growing/fungating
Lonsurf started 11/18/16
Died 3/10/17

ebv60
Posts: 45
Joined: Thu Jan 24, 2013 1:22 pm

Re: Lonsurf

Postby ebv60 » Tue Jun 13, 2017 9:36 pm

Just a little update on my wife .. Lonsurf since Jan '17 ..getting a break for the Lonsurf for at least two weeks. She has lost a lot of weight, diarrhea thing, no appetite and really tired, Doctor order chest X-ray today a more blood test to check CEA..no scan yet, her last one was late Dec '16 .Was hope for a scan to see what the tumors are doing???

It will be 5 years tomorrow that the cancer was found ...she fought very hard . the cancer has taken a toll on her ..she has lost right at a 100 pounds over the 5 years
to DW 6/12 stage 4
6/12 colon resection, liver Mets
Folfox & Folfiri till 4/13
liver resection Mayo 5/13 Clear margins
mop up chemo
NED till 9/14
cancer complete hysterectomy,
CEA climbing 12/14
1/15 scans, tumors return
1/15 Mayo for surgery; need shrinkage before surgery
Folfiri w Erbitux
break over Christmas, rash from Erbitux
1/16 scan tumors growing, liver, lungs, lymph nodes involvement
Folfiri w Avastin 1/16
Stivarga 6/16
lonsurf 1/17
Scan 6/17 tumors growing.
At peace 7/17

a_mwalter
Posts: 3
Joined: Tue Apr 11, 2017 7:10 pm
Facebook Username: Andrea W Ballard

Re: Lonsurf

Postby a_mwalter » Sat Mar 10, 2018 4:48 pm

Original poster back. My husband has been on Lonsurf since 4/2017, almost a year now. Initially it knocked back the tumors ever so slightly. We just had a scan Tuesday and get the results in a few days. We are praying for good results however he feels like that won't be the case. It has worn on him, physically and mentally, diarrhea has been constant and lately he has been cramping (not just stomach). He used to regain strength and energy between rounds (5 days on, 2 days off, 5 days on, 2 weeks off), however, now, he remains tired and the diarrhea and cramping continues. He is a fighter and going on almost 7 years with only one 3 month period of "no disease evident". Curious if anyone else has been on Lonsurf for this long and you have done Lonsurf- what treatments did you try afterwards? Thanks!
8/2011- Diagnosed, colon resection
9/2011- 5-FU
1/2012- Liver Ablation (4/12, 7/12, 4/13, 12/14, 8/16)
9/13- Campostar (CPT-11)
12/13- Xeloda
4/14- Abdominal surgery
12/14- Lung resection
1/15- Stivarga
7/15- Campostar again
2/16- Lung resection
5/16- Abdominal surgery
1/17- Y90 procedures
4/17- Lonsurf

risto
Posts: 54
Joined: Wed Jan 06, 2016 2:28 am
Location: USA

Re: Lonsurf

Postby risto » Sun Mar 11, 2018 3:48 pm

Your DH has been through a lot, but I don't see Oxaliplatin on the list. Has he tried FOLFOX?
DW Dx 7/15, 41 yo, st IV, 3+ liver mets: 11.3 cm, 7cm, 3cm. MSS.
KRAS, APC, SMAD4, TP53 mut.
7/15-10/15: FOLFOX+bev. x8
11/15-12/15: SIRT (Y90)
1/16: Toxic Hepatitis, chemo break
4/16: Liver resec. fail
5/16-7/16: FOLFIRI x6
8/16: Liver resec.
8/16-11/16: FOLFIRI x6
2/17: IMRT/Xeloda x25
4/17: LAR
6/17: CT: Progression. Peri, Lung, Liver mets. FOLFIRI x6
9/17: FOLFIRI+Bev x5.
11/17: CT: Stable. 5FU+bev. maintenance x5
1/18-2/18: Surgery for SBO
5/18: ascites, acute liver injury


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