Starting LONSURF

2

Comments

  • beenbetter
    beenbetter Member Posts: 14

    Personally, I think you guys are crazy for taking Lonsurf

    I've spoken with numerous oncologists, and a few patients first-hand who tried it.  I can't believe this drug even got approved by the FDA.  All the patients I spoke with had terrible side effects and one patient nearly died within two weeks of taking Lonsurf.  Plus, look at the trial data, it looks pretty pathetic, in some cases patients supposedly lived an extra 3 months.  I've sure you could get the same increase in life expectancy doing almost anything, sitting on the couch watching T.V. eating potato chips is one option.  Please don't get manipulated by desperation, sometimes doing nothing, is better then doing something.  The bottom line, you will have a ton of terrible side affects, with very little increase in life expectancy.  Avoid.

    Yes side effects can be bad..

    Yes side effects can be bad.....but I started lonsurf last June (with much trepidation) and have had a good ct scan in Sept moderate mixed in Dec ct, March ct stable cancer with diminishing liver node.  Omental thickening stable. Plus my Cea s 6/15 13.0 7/10 13.0 7/17 13.0 7/24 12.0   up a bit Sep to 18....so yes maybe doing nothing would have shown similar results; but hindsight is always 20 20.  When you have no options sometimes a long shot is worth it- for me it was not financial as insurance paid.    So at finishing course 9 I dont know.  Yes the trials said 83% die and the rest get maybe 3 months....maybe I am just a strange exception. Any chemo beats you up.  I dont feel great, but I am here  if I stop maybe i will continue for another 4 or 5 months-who knows....

       Just some thoughts.

  • debugy2k
    debugy2k Member Posts: 85

    Yes side effects can be bad..

    Yes side effects can be bad.....but I started lonsurf last June (with much trepidation) and have had a good ct scan in Sept moderate mixed in Dec ct, March ct stable cancer with diminishing liver node.  Omental thickening stable. Plus my Cea s 6/15 13.0 7/10 13.0 7/17 13.0 7/24 12.0   up a bit Sep to 18....so yes maybe doing nothing would have shown similar results; but hindsight is always 20 20.  When you have no options sometimes a long shot is worth it- for me it was not financial as insurance paid.    So at finishing course 9 I dont know.  Yes the trials said 83% die and the rest get maybe 3 months....maybe I am just a strange exception. Any chemo beats you up.  I dont feel great, but I am here  if I stop maybe i will continue for another 4 or 5 months-who knows....

       Just some thoughts.

    Cycle 3

    Mom had to skip 1 week before starting Cycle 3 since she had low blood counts.  Also lowered the dosage a bit.  2x15mg in the AM and 3x15mg in the PM.

    No real side effects.  Maybe a bit more fatigue but probably caused by the lower blood counts that lonsurf causes.

    Recent CT scan shows everything stable.  Only thing is that the colon tumor mass is "squishing" the appendix.  Will be having surgical consult next week to see what the options are.  Hopefully no need for a major surgery for a bypass since that means she would have to use an ostomy bag and she doesn't want that.

  • beenbetter
    beenbetter Member Posts: 14
    debugy2k said:

    Cycle 3

    Mom had to skip 1 week before starting Cycle 3 since she had low blood counts.  Also lowered the dosage a bit.  2x15mg in the AM and 3x15mg in the PM.

    No real side effects.  Maybe a bit more fatigue but probably caused by the lower blood counts that lonsurf causes.

    Recent CT scan shows everything stable.  Only thing is that the colon tumor mass is "squishing" the appendix.  Will be having surgical consult next week to see what the options are.  Hopefully no need for a major surgery for a bypass since that means she would have to use an ostomy bag and she doesn't want that.

    Glad your mom had no real bad

    Glad your mom had no real bad side effects.  Fatigue is the most for me and gi pains.  My counts drop on week 2 off so I have to wait 3 weeks to start the next cycle.

      I had my appendix removed when they took out a big part of my large colon in 2016, but did not have to get a ostomy due to the skill of my surgeon-plus I was very lucky.

    So in a week I start Cycle 10 and my ct scan March 1 was very good.  GOOD LUCK TO YOUR MOM> My dose has remained the same 20mg 3 in am and 3 in pm. Hope this helps.

  • debugy2k
    debugy2k Member Posts: 85

    Glad your mom had no real bad

    Glad your mom had no real bad side effects.  Fatigue is the most for me and gi pains.  My counts drop on week 2 off so I have to wait 3 weeks to start the next cycle.

      I had my appendix removed when they took out a big part of my large colon in 2016, but did not have to get a ostomy due to the skill of my surgeon-plus I was very lucky.

    So in a week I start Cycle 10 and my ct scan March 1 was very good.  GOOD LUCK TO YOUR MOM> My dose has remained the same 20mg 3 in am and 3 in pm. Hope this helps.

    Heard back from the surgeon!!

    Heard back from the surgeon!!  GREAT NEWS for us!!  He says because of the "squishing" of the appendix, they can remove the appendix, part of the colon...AND the main colon tumor mass!!!  That's what we wanted over 2 years ago when they had the emergency surgery because of the colon blockage.  Surgeon even said that mom didn't need the ostomy bag since she already had the colon bypass.  They're planning on going in laparoscopically and then maybe do a 2 inch cut at the belly to remove the cuts and also fix mom's hernia at the same time. 

    We're so happy with the news.  Main mass out is always good.  And from what it sounds like that it's a fairly safe and simple surgery.

  • Ruthmomto4
    Ruthmomto4 Member Posts: 705 Member
    debugy2k said:

    Heard back from the surgeon!!

    Heard back from the surgeon!!  GREAT NEWS for us!!  He says because of the "squishing" of the appendix, they can remove the appendix, part of the colon...AND the main colon tumor mass!!!  That's what we wanted over 2 years ago when they had the emergency surgery because of the colon blockage.  Surgeon even said that mom didn't need the ostomy bag since she already had the colon bypass.  They're planning on going in laparoscopically and then maybe do a 2 inch cut at the belly to remove the cuts and also fix mom's hernia at the same time. 

    We're so happy with the news.  Main mass out is always good.  And from what it sounds like that it's a fairly safe and simple surgery.

    Great news!

    i am so happy for you!!!!

  • Annabelle41415
    Annabelle41415 Member Posts: 6,715 Member
    debugy2k said:

    Heard back from the surgeon!!

    Heard back from the surgeon!!  GREAT NEWS for us!!  He says because of the "squishing" of the appendix, they can remove the appendix, part of the colon...AND the main colon tumor mass!!!  That's what we wanted over 2 years ago when they had the emergency surgery because of the colon blockage.  Surgeon even said that mom didn't need the ostomy bag since she already had the colon bypass.  They're planning on going in laparoscopically and then maybe do a 2 inch cut at the belly to remove the cuts and also fix mom's hernia at the same time. 

    We're so happy with the news.  Main mass out is always good.  And from what it sounds like that it's a fairly safe and simple surgery.

    Wonderful

    Wishing her surgery is a great success and this is very good news.  When you can take out a tumor it's the best possible means of good recovery and hoping this will be the case.  Thanks for the update.  Hope the surgery can happen soon.

    Kim

  • tanstaafl
    tanstaafl Member Posts: 1,299 Member
    thanks

    I want to congratulate and thank beenbetter for his reports.  I am always wary of harsh chemotherapies but it is important to know about the successes as well as the disasters.  To me, Lonsurf's statistics are daunting, but the real trick about a drug that yields only 1 out of  9 successes is to weed out those other 8 asap or predictively.

    The other issue is whether Lonsurf can be used as a backbone, like we do with 5FU, with nicer things like nutraceuticals that decrease the side effects, and perhaps increase the cancer inhibition; or use milder drugs like celecoxib or cimetidine to extend kill and maybe lower dose/frequency.

  • Morning Glory 5
    Morning Glory 5 Member Posts: 1
    Appendix Cancer - Just starting Lonsurf

    I am on my 2nd week of Lonsurf (Day 10). My red, white, ANC, and platelets went down. CEA went up. So far I am experiencing: extreme abdominal pain, ringing in the ears, severe lower back pain, hip pain, tingling of fingers and a pins and needles sensation on feet. Anyone else on Lonsurf?  

  • debugy2k
    debugy2k Member Posts: 85

    Appendix Cancer - Just starting Lonsurf

    I am on my 2nd week of Lonsurf (Day 10). My red, white, ANC, and platelets went down. CEA went up. So far I am experiencing: extreme abdominal pain, ringing in the ears, severe lower back pain, hip pain, tingling of fingers and a pins and needles sensation on feet. Anyone else on Lonsurf?  

    My mom has been on Lonsurf

    My mom has been on Lonsurf for 3 cycles.  Stage 4 colon cancer mets liver.  Her counts went low but that's just how the pills work.  Lonsurf works by preventing cell division...ANY cell division.  So tumor cells will slow down along with white, red, platelets, hair cells, etc.  No real side effects except for a tiny bit more fatigue than on preview chemo drugs. 

    Mom's having surgery next week so she's off the pills for now.  Not sure when we will get back on it.

  • Trubrit
    Trubrit Member Posts: 5,562 Member
    Wishing your mum well

    I hope surgery goes well, and that she heals quickly. 

    Will they put her back on the Lonsurf when she is healed? 

    Tru

  • debugy2k
    debugy2k Member Posts: 85
    YAY~~~ Surgery went well!!

    Surgery went well.  It took 7 hours....crazy long surgery.  Much respect for the surgeon for doing it 7 hours straight.  Mom had her surgery at Englewood Hospital (NJ) with the same surgeon from 2015 that did her colon bypass.  

    He removed part of her colon, main colon tumor mass, appendix (the main reason for this surgery) and also fixed her hernia.  Did it laparoscopically with 5 small incisions and one 2 inch incision at the hernia to remove everything and fix the hernia as well.

    Post-op went well.  No pain and didn’t need to use the morphine.  Mom was up and walking around already.  Still needed some helf getting up and down from bed but other than that all good.  Giving her solid foods already and just waiting for her to pass gas first before discharge.

    We’re super happy that the main tumor mass is out.  Now we can concentrate on the remaining liver tumors.

  • Trubrit
    Trubrit Member Posts: 5,562 Member
    debugy2k said:

    YAY~~~ Surgery went well!!

    Surgery went well.  It took 7 hours....crazy long surgery.  Much respect for the surgeon for doing it 7 hours straight.  Mom had her surgery at Englewood Hospital (NJ) with the same surgeon from 2015 that did her colon bypass.  

    He removed part of her colon, main colon tumor mass, appendix (the main reason for this surgery) and also fixed her hernia.  Did it laparoscopically with 5 small incisions and one 2 inch incision at the hernia to remove everything and fix the hernia as well.

    Post-op went well.  No pain and didn’t need to use the morphine.  Mom was up and walking around already.  Still needed some helf getting up and down from bed but other than that all good.  Giving her solid foods already and just waiting for her to pass gas first before discharge.

    We’re super happy that the main tumor mass is out.  Now we can concentrate on the remaining liver tumors.

    Happy news!

    This has made my day.  What a great report. May it be onward and upward from here. 

    Tru

  • Ruthmomto4
    Ruthmomto4 Member Posts: 705 Member
    debugy2k said:

    YAY~~~ Surgery went well!!

    Surgery went well.  It took 7 hours....crazy long surgery.  Much respect for the surgeon for doing it 7 hours straight.  Mom had her surgery at Englewood Hospital (NJ) with the same surgeon from 2015 that did her colon bypass.  

    He removed part of her colon, main colon tumor mass, appendix (the main reason for this surgery) and also fixed her hernia.  Did it laparoscopically with 5 small incisions and one 2 inch incision at the hernia to remove everything and fix the hernia as well.

    Post-op went well.  No pain and didn’t need to use the morphine.  Mom was up and walking around already.  Still needed some helf getting up and down from bed but other than that all good.  Giving her solid foods already and just waiting for her to pass gas first before discharge.

    We’re super happy that the main tumor mass is out.  Now we can concentrate on the remaining liver tumors.

    That’s fabulous!

    your mom is one tough lady!!!! I hope she continues to do so well!!

  • BRHMichigan
    BRHMichigan Member Posts: 368
    Great news!

    Thank you for sharing another success for your Mom. Inspiration for all. 

  • beenbetter
    beenbetter Member Posts: 14
    tanstaafl said:

    thanks

    I want to congratulate and thank beenbetter for his reports.  I am always wary of harsh chemotherapies but it is important to know about the successes as well as the disasters.  To me, Lonsurf's statistics are daunting, but the real trick about a drug that yields only 1 out of  9 successes is to weed out those other 8 asap or predictively.

    The other issue is whether Lonsurf can be used as a backbone, like we do with 5FU, with nicer things like nutraceuticals that decrease the side effects, and perhaps increase the cancer inhibition; or use milder drugs like celecoxib or cimetidine to extend kill and maybe lower dose/frequency.

    Thanks to tanstaafl for a positive response

    will be starting course 11 in a few weeks if bloods are good...I know I am the exception with Lonsurf and it has made me very very anemic lately, but I can still walkSmile

    Just prior to startin course 10 my anc was very low and concerned me quite a bit and the last few courses of the Lonsurf have affected my gi tract very hard...its hard for me to give up.

  • beenbetter
    beenbetter Member Posts: 14
    debugy2k said:

    YAY~~~ Surgery went well!!

    Surgery went well.  It took 7 hours....crazy long surgery.  Much respect for the surgeon for doing it 7 hours straight.  Mom had her surgery at Englewood Hospital (NJ) with the same surgeon from 2015 that did her colon bypass.  

    He removed part of her colon, main colon tumor mass, appendix (the main reason for this surgery) and also fixed her hernia.  Did it laparoscopically with 5 small incisions and one 2 inch incision at the hernia to remove everything and fix the hernia as well.

    Post-op went well.  No pain and didn’t need to use the morphine.  Mom was up and walking around already.  Still needed some helf getting up and down from bed but other than that all good.  Giving her solid foods already and just waiting for her to pass gas first before discharge.

    We’re super happy that the main tumor mass is out.  Now we can concentrate on the remaining liver tumors.

    EXCELLENT NEWS--- CONGRADS

    Wonderful news- its great to have good news for a change-I know how it feels to go for months with wondering what next...good for you and your mom.

  • Lovinglife1
    Lovinglife1 Member Posts: 2

    Personally, I think you guys are crazy for taking Lonsurf

    I've spoken with numerous oncologists, and a few patients first-hand who tried it.  I can't believe this drug even got approved by the FDA.  All the patients I spoke with had terrible side effects and one patient nearly died within two weeks of taking Lonsurf.  Plus, look at the trial data, it looks pretty pathetic, in some cases patients supposedly lived an extra 3 months.  I've sure you could get the same increase in life expectancy doing almost anything, sitting on the couch watching T.V. eating potato chips is one option.  Please don't get manipulated by desperation, sometimes doing nothing, is better then doing something.  The bottom line, you will have a ton of terrible side affects, with very little increase in life expectancy.  Avoid.

    I have been on lonsurf for 18

    I have been on lonsurf for 18 months. My main side effects have been the low blood counts but have only needed 1 blood transfusion and N/V which zofran handles. I've been very pleased with the results

     

  • PaMon38ty
    PaMon38ty Member Posts: 1
    edited February 2021 #39
    Lonsurf and Immunotherapy

    Hi all, I am waiting to get on an immunotherapy trial and considering Lonsurf to keep tumours from increasing.

    I have stage IV diagnosed in July 17 and did chemo, and radiation etc

    Been so lucky as really only mild reactions, never felt sick

    Has anyone had mild reactions to chemo and then hone on Lonsurf? 

  • Trubrit
    Trubrit Member Posts: 5,562 Member
    edited February 2021 #40
    PaMon38ty said:

    Lonsurf and Immunotherapy

    Hi all, I am waiting to get on an immunotherapy trial and considering Lonsurf to keep tumours from increasing.

    I have stage IV diagnosed in July 17 and did chemo, and radiation etc

    Been so lucky as really only mild reactions, never felt sick

    Has anyone had mild reactions to chemo and then hone on Lonsurf? 

    Hello, and welcome to the forum

    This is an old thread, and you will get more response if you start your own thread. 

    Here is the link to the forum home page https://csn.cancer.org/forum/128

    Tru

  • Bulldog2
    Bulldog2 Member Posts: 2
    LONSURF

    Hi. My oncologist suggested I start on the Lonsurf regimen in a few weeks. Been reading the posts here and it looks like Longsurf only works for 10-12% of patients who take it. Some get terrible side effects, others hardly any.

    I was diagnosed with stage 4 colon cancer in 2008. Have had over a dozen surgeries, multiple radiation and chemotherapy rounds over the years.

    The cancer has spread to my esophagus and trachea over the past 2 years. I have to use a G tube for feeding. I was/am a foodie. I can drink some liquids a little at a time, but no solid food.  

    Anyway, just wanted to ask the folks here who have been on Lonsurf, how has your experience been? How long does one take it? Did your insurance cover the cost? My insurance, Aetna, wants $3155 for the 1st month of pills, then $900/month thereafter. I think that's outrageous! I haven't made the decision to take the pills yet. Hoping for some good info from the group!

    Thanks for your replies!