Lonsurf worth it?

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bjones1128
Posts: 43
Joined: Tue May 12, 2015 12:07 pm
Facebook Username: barbslife
Location: South Carolina

Lonsurf worth it?

Postby bjones1128 » Fri Dec 04, 2015 5:24 pm

My chemo has stopped working, my tumors are inoperable and the oncologist said the only option I have left is the recently approved Lonsurf. But if I am reading this FDA report correctly, people on Lonsurf only lived 1-2 months longer than those on the placebo. I'm not sure 1-2 months is worth the chemo side effects. Has anybody tried Lonsurf? What do you think?

"Patients treated with Lonsurf lived an average of 7.1 months compared to 5.3 months for those treated with placebo. On average, the time to disease progression was two months for patients on Lonsurf compared to 1.7 months for patients receiving placebo" - FDA

http://www.fda.gov/NewsEvents/Newsroom/ ... 463650.htm
Single mom of two wonderful boys
Dx June 2014 Stage IVB Colon (sigmoid) @ age 38
Mets in brain, lungs, adrenal gland, nodes, ovary
July 2014 stereotactic radiosurgery to brain
July 2014 craniotomy, brain met removed!
Aug 2014 Folfiri
Feb 2015 Xeloda & Avastin didn't work
May 2015 mets to spine & knee, more mets to lungs, airspace disease
May 2015 Folfox, Avastin, Zemota
May 2015 radiation to knee

mariane
Posts: 704
Joined: Sun Sep 13, 2015 6:16 pm

Re: Lonsurf worth it?

Postby mariane » Fri Dec 04, 2015 6:26 pm

I am so very sorry that you have to go through so much. I am also stage 4 mom. I will pray for you. You need to decide yourself which way you choose at this point. I will pray for your decision.

If you choose no chemo I would choose one of these clinical trials. I see from your signature that you stayed on FOLFIRI for 6 months. It was a year ago. Maybe trying Rx-001 mentioned by Tom would be a good idea and re-sensitizing to FOLFIRI could be good option? Rx-001 has no side effects. What you need is time with your kids, time until potent, long-lasting proved, immunology med finally comes. For me this med looks promising and worked (!) on small group of patients.

viewtopic.php?f=1&t=53072

I also like this one as well:
No side effects , better quality of life, life extension:

viewtopic.php?f=1&t=52534&p=412532#p412532

I would also take probiotics from now on.
mom of now 14 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!

Ceebo
Posts: 132
Joined: Sat Feb 14, 2015 9:15 am
Location: Southwest Michigan

Re: Lonsurf worth it?

Postby Ceebo » Fri Dec 04, 2015 7:54 pm

My DH started taking it the end of Seotember, 2015. He has completed 2 cycles of it and is scheduled for the next cycle next week. He has had minimal side effects--a little fatigue and some neutropenia. He has been able to stay very active. Unfortunately, we don't know yet how effective the drug is at keeping his mets stable--a scan will be done in January. We weren't too excited about the results from the clinical trial either, but we really didn't have any better choices. We continue to be hopeful that this will keep him stable enough to hang on until something comes along that is better!! The treatment regimen is very doable!
DH 64 Stage 4 on 4/14 ; cecal tumor; 5+ nodes ; mets to liver; colon resection
5/14 FOLFOX
9/14 - Liver surgery aborted; peri mets
10/14 CT mult.1-2 mm lung mets; FOLFIRI & Avastin
1/15 CT -liver & lung mets shrinking
3/15 PET - ? New met. site colon; CEA rising
7/15 Chemo has failed; looking for clinical trial
9/29/15 started TAS-102 trial
KRAS mutant; MSS

bjones1128
Posts: 43
Joined: Tue May 12, 2015 12:07 pm
Facebook Username: barbslife
Location: South Carolina

Re: Lonsurf worth it?

Postby bjones1128 » Fri Dec 04, 2015 10:42 pm

mariane wrote:I am so very sorry that you have to go through so much. I am also stage 4 mom. I will pray for you. You need to decide yourself which way you choose at this point. I will pray for your decision.

If you choose no chemo I would choose one of these clinical trials. I see from your signature that you stayed on FOLFIRI for 6 months. It was a year ago. Maybe trying Rx-001 mentioned by Tom would be a good idea and re-sensitizing to FOLFIRI could be good option? Rx-001 has no side effects. What you need is time with your kids, time until potent, long-lasting proved, immunology med finally comes. For me this med looks promising and worked (!) on small group of patients.

viewtopic.php?f=1&t=53072

I also like this one as well:
No side effects , better quality of life, life extension:

viewtopic.php?f=1&t=52534&p=412532#p412532

I would also take probiotics from now on.


Mariane, If the Lonsurf doesn't work I will keep these trials in mind to ask my physician about. Thanks for your prayers.
Single mom of two wonderful boys
Dx June 2014 Stage IVB Colon (sigmoid) @ age 38
Mets in brain, lungs, adrenal gland, nodes, ovary
July 2014 stereotactic radiosurgery to brain
July 2014 craniotomy, brain met removed!
Aug 2014 Folfiri
Feb 2015 Xeloda & Avastin didn't work
May 2015 mets to spine & knee, more mets to lungs, airspace disease
May 2015 Folfox, Avastin, Zemota
May 2015 radiation to knee

bjones1128
Posts: 43
Joined: Tue May 12, 2015 12:07 pm
Facebook Username: barbslife
Location: South Carolina

Re: Lonsurf worth it?

Postby bjones1128 » Fri Dec 04, 2015 10:44 pm

Ceebo wrote:My DH started taking it the end of Seotember, 2015. He has completed 2 cycles of it and is scheduled for the next cycle next week. He has had minimal side effects--a little fatigue and some neutropenia. He has been able to stay very active. Unfortunately, we don't know yet how effective the drug is at keeping his mets stable--a scan will be done in January. We weren't too excited about the results from the clinical trial either, but we really didn't have any better choices. We continue to be hopeful that this will keep him stable enough to hang on until something comes along that is better!! The treatment regimen is very doable!


Ceebo, please keep us updated on how your husband is doing on Lonsurf. It's so new that I think we could all use some real experiences.
Single mom of two wonderful boys
Dx June 2014 Stage IVB Colon (sigmoid) @ age 38
Mets in brain, lungs, adrenal gland, nodes, ovary
July 2014 stereotactic radiosurgery to brain
July 2014 craniotomy, brain met removed!
Aug 2014 Folfiri
Feb 2015 Xeloda & Avastin didn't work
May 2015 mets to spine & knee, more mets to lungs, airspace disease
May 2015 Folfox, Avastin, Zemota
May 2015 radiation to knee

Ceebo
Posts: 132
Joined: Sat Feb 14, 2015 9:15 am
Location: Southwest Michigan

Re: Lonsurf worth it?

Postby Ceebo » Fri Dec 18, 2015 6:52 am

My DH was only able to complete 2 cycles of the Lonsurf. CT scans were done yesterday after only 2 cycles because he was losing a little weight and had a little abdominal pain for a couple of days. The scans showed significant disease progression in the liver and the peritoneum. The lung scan results were not back, but I anticipate they will show similar progression. So, the drug was stopped. We are now looking for other clinical trial options. There are not many trials available for mCC/MSS. We continue to pray for new doors to open for us. We are thankful that he is feeling good and has been staying very active. He has a great attitude and a deep faith. --Cindie
DH 64 Stage 4 on 4/14 ; cecal tumor; 5+ nodes ; mets to liver; colon resection
5/14 FOLFOX
9/14 - Liver surgery aborted; peri mets
10/14 CT mult.1-2 mm lung mets; FOLFIRI & Avastin
1/15 CT -liver & lung mets shrinking
3/15 PET - ? New met. site colon; CEA rising
7/15 Chemo has failed; looking for clinical trial
9/29/15 started TAS-102 trial
KRAS mutant; MSS


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