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Starting LONSURF

debugy2k's picture
debugy2k
Posts: 84
Joined: Oct 2017

Guess mom is starting on LONSURF.  After 2 years of various chemo and the last 3 months off chemo on trying to see if there was surgical option, we're finally on to using LONSURF.  Didn't really want to use LONSURF to begin with because of the huge side effects from what I've read.  Also, LONSURF is considered the "last line" chemo drug.  But mutliple doctors suggested to take this and then reaccess 6 months later to see if surgery is an option.

Mom just taken her morning dose of LONSURF.  Will update on the side effects as time goes along.

Trubrit's picture
Trubrit
Posts: 5177
Joined: Jan 2013

I had a friend on LONSURF. Sadly, had is past tense. 

We try what we have to, in order to survive. 

I do so hope the side effects aren't too awful for her. 

Tru

Katijane1's picture
Katijane1
Posts: 8
Joined: Jan 2018

Hi there. My dad took Lonsurf begining May 2017 and it sent him to the hospital for a week at end of June. It caused severe inflammatory process to his GI tract where he had perfuse diarrhea. CT showed inflammation throughout his small intestines. He was dehydrated, anemic with his electrolytes all out of wack. The oncologist wanted to keep him on a lower dose after wards which now hindsight, I feel was a bad idea. 

By no means I’m saying this will occur with your mom, but perhaps being aware of what happened to my dad, you and your mom can make better choices.

You never know, this may just be the ideal drug for your mom! And I hope it is. Good luck to you and your mom. I know the journey you are on, it’s a tough one. Best of luck.

debugy2k's picture
debugy2k
Posts: 84
Joined: Oct 2017

What stage cancer is your dad at?

Is he still on a lower dose of lonsurf?

Katijane1's picture
Katijane1
Posts: 8
Joined: Jan 2018

My dad is at Stage IV. He’s been off Lonsurf since August, I believe. 

Ruthmomto4's picture
Ruthmomto4
Posts: 659
Joined: May 2013

but I just wanted to wish you and your mom especially the best of luck 

Annabelle41415's picture
Annabelle41415
Posts: 6517
Joined: Feb 2009

Sorry about your mom. I'm hoping this gives her some success.

Kim

debugy2k's picture
debugy2k
Posts: 84
Joined: Oct 2017

Day 3 on Lonsurf.  No noticeable side effects yet.  Only thing "new" is a little bit of bloating which gets better after mom burps or farts.

beenbetter
Posts: 14
Joined: Mar 2017

Went through all the standard iv chemo treatments for stage 4 colorectal with mets to liver and omentum.....they were going to give up on me June 2017 started Lonsurf...scan Sept 2017 showed decrease in liver nodes and no new cancer!  December scan showed some growth in 2 liver nodes but rest of cancer stable...a lot to go through ie side effects mostly gi inflamation ....am 71 and last june they said I just had a few months to go and see hospice!  So, you never know...I have another scan in Feb, but dont know if it will be better, my oncologist seems to be stepping back which bothers me a lot...I am praying for more time as I am sure everyone is with this horrible disease.

beenbetter
Posts: 14
Joined: Mar 2017

Just wanted to add that all I researched about Lonsurf said it eithar did nothing at all or worked really good- It has given me some more time the quality has not been 100% but I am still here- just prior to taking Lonsurf one of the clinical nurses said to me "well some people want to go kicking and screaming".....I guess that would be me.  Each day is a gift.  I started this journey at stage 4 almost 2 years ago.

debugy2k's picture
debugy2k
Posts: 84
Joined: Oct 2017

My mom is in the same situation.  Been diagnosed Stage 4 colon cancer mets to liver and peritoneum back in Oct. 2015.  Been on a few different chemo meds and now oncologist suggested Lonsurf since surgical wasn't an option.

Just a question.  So far we've taken it almost 2 weeks.  No real side effects.  But she is complaining about gas/constipation.  Did you have any side effects?

harleywiz's picture
harleywiz
Posts: 51
Joined: Aug 2014

everything i read says 88% of people got worse ot died in 7 months no other chemo worked for me 5 plus years im 60 and feel great doctorsays this is last drug or try trials looking for new options does not seem like a good drug to me 

debugy2k's picture
debugy2k
Posts: 84
Joined: Oct 2017

Yea, we didn't want to take Lonsurf as well because of the many negative reviews of it that I've read about and also it's way too "new".  But oncologists say no other drugs to use.  And there wasn't a surgical option.  So we decided to take it after 3 months of being off any chemo.

coloCan
Posts: 1956
Joined: Oct 2009

can be found at markets.businessinsider.com dated 1/20/18,which includes links to asco meeting abstracts on this as well,entitled "Taiho Oncology and Servier Present LONSURF mCRC Data at ASCO 2018 Gastrointestinal Cancers Symposium" going on now.

debugy2k's picture
debugy2k
Posts: 84
Joined: Oct 2017

Just a status update for people curious about Lonsurf

First cycle (2 weeks) of Lonsurf went well.  On the first week (Days 1-5), mom was on 2x15mg Lonsurf pill twice daily.  Second week (Days 8-12), the oncologist up the dose to 3x15mg twice daily.  No side effects.  So far so good.  Blood count is holding and looks normal.  Now it's 2 weeks rest before the next cycle.

beenbetter
Posts: 14
Joined: Mar 2017

When I started Lonsurf in early June last year- I went thru agony deciding if to take it or not- no other options at that point and here it is end of Jan 2018- (thats 8 months)  my bloods are going down- wanted to go to 4 week cycle as i had been on a 5 week cycle ie 2 weeks on, 3 off for recovery- but my bloods were weak so have to wait and then scan with just 2 cycles when I wanted 3- yes the possible side effects are very serious, you just dont know how your body will react.  I dont really know if I would have still been here or not without the Lonsurf, but I had to say to myself at least I tried. Did it give me more time or would I have still been here without the side effects??  I hope this helps....

debugy2k's picture
debugy2k
Posts: 84
Joined: Oct 2017

Did you have low blood counts when you first started on lonsurf or did it go down gradually over time since you started taking it?

Good luck on your next scan!  

 

 

beenbetter
Posts: 14
Joined: Mar 2017

Blood counts went down gradually for me-on day 15 were ok, but went down 2 weeks later so I had to wait 3 weeks to start another course- so I have been on a schedule of 2 weeks on then 3 weeks rest- (instead of 2 weeks rest) Have been on it since June last year, mostly gi problems, severe cramps loose irregular bms. and very very tired.  Scan was very good in September (after 3 courses)  in December after 6 couses, it was not as good (some new growth) and now have a scan this comming week (my oncologist only let me do 2 courses instead of 3!)....I am really afraid  (that the scan will not be good enough for me to continue due to more growth)

  So it was June, July, August - scan in early Sept.    Sept, Oct, Nov - Scan in late December       Jan, Feb -  Scan comming up

debugy2k's picture
debugy2k
Posts: 84
Joined: Oct 2017

Hope you're scans show better improvement with Lonsurf.  That's what I'm afraid of also, that Lonsurf doesn't really "help" that much compared to the other traditional chemo drugs.  Mom's starting on the 3rd cycle soon.  And hopefully we can get scheduled for a CT scan to see how Lonsurf is working for her.  

Did your doctors discuss what other drugs they can use "after" Lonsurf?

beenbetter
Posts: 14
Joined: Mar 2017

my scan of March 1st showed imrovement in size of a somewhat large node in liver- a decrease - all other cancer remained stable! omentum remained same thickness as in December- So I am about to start cycle 9 - which is kind of unheard of -  So would I be here if I had not taken the Lonsurf?  I dont really know.  Started in June  2017 after all traditional iv chemos failed or did not slow the disease as much as they wanted.  Hope this helps.... For me thats about 9 months of more life...quality of life up and down...side effects can be debilatating- cramps- tiredness- gi problems. Short window of being able to go about with a "normal" life.  For me there are no other choises left except strivaga- which is a terrible drug and has really horible side effects- hands feet- etc I will not take it.  Hope this helps-be brave

optimist777
Posts: 38
Joined: Feb 2018

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.

beenbetter
Posts: 14
Joined: Mar 2017

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's picture
debugy2k
Posts: 84
Joined: Oct 2017

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
Posts: 14
Joined: Mar 2017

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's picture
debugy2k
Posts: 84
Joined: Oct 2017

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's picture
Ruthmomto4
Posts: 659
Joined: May 2013

i am so happy for you!!!!

Annabelle41415's picture
Annabelle41415
Posts: 6517
Joined: Feb 2009

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

Lovinglife1
Posts: 2
Joined: Oct 2019

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

 

tanstaafl's picture
tanstaafl
Posts: 1292
Joined: Oct 2010

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.

beenbetter
Posts: 14
Joined: Mar 2017

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.

Morning Glory 5
Posts: 1
Joined: Apr 2018

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's picture
debugy2k
Posts: 84
Joined: Oct 2017

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's picture
Trubrit
Posts: 5177
Joined: Jan 2013

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

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

Tru

debugy2k's picture
debugy2k
Posts: 84
Joined: Oct 2017

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's picture
Trubrit
Posts: 5177
Joined: Jan 2013

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

Tru

Ruthmomto4's picture
Ruthmomto4
Posts: 659
Joined: May 2013

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

beenbetter
Posts: 14
Joined: Mar 2017

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.

BRHMichigan's picture
BRHMichigan
Posts: 368
Joined: Jul 2017

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

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