Starting LONSURF

debugy2k
debugy2k Member Posts: 85 Member
in Colorectal Cancer #1

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.

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Comments

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #2
    Good luck to your mum

    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
    Katijane1 Member Posts: 8
    #3
    Hi there. My dad took Lonsurf

    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.

  • Ruthmomto4
    Ruthmomto4 Member Posts: 708 Member
    #4
    I have no experience

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

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #5
    Sorry

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

    Kim

  • debugy2k
    debugy2k Member Posts: 85 Member
    #6
    Katijane1 said:

    Hi there. My dad took Lonsurf

    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.

    What stage cancer is your dad

    What stage cancer is your dad at?

    Is he still on a lower dose of lonsurf?

  • debugy2k
    debugy2k Member Posts: 85 Member
    #7
    Day 3

    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
    beenbetter Member Posts: 14
    #8
    Lonsurf experience

    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
    beenbetter Member Posts: 14
    edited January 2018 #9
    More on Lonsurf experience

    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.

  • harleywiz
    harleywiz Member Posts: 50 Member
    #10
    don't want to start lonsurf

    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 

  • coloCan
    coloCan Member Posts: 1,944 Member
    edited January 2018 #11
    More on Lonsurf/Tas-102

    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.

  • Katijane1
    Katijane1 Member Posts: 8
    #12
    debugy2k said:

    What stage cancer is your dad

    What stage cancer is your dad at?

    Is he still on a lower dose of lonsurf?

    My dad is at Stage IV. He’s

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

  • debugy2k
    debugy2k Member Posts: 85 Member
    edited January 2018 #13
    harleywiz said:

    don't want to start lonsurf

    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 

    Yea, we didn't want to take

    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.

  • debugy2k
    debugy2k Member Posts: 85 Member
    edited January 2018 #14
    beenbetter said:

    More on Lonsurf experience

    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.

    My mom is in the same

    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?

  • debugy2k
    debugy2k Member Posts: 85 Member
    #15
    Just a status update for

    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
    beenbetter Member Posts: 14
    edited January 2018 #16
    FOR THOSE NOT WANTING TO START LONSURF-just a bit more

    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
    debugy2k Member Posts: 85 Member
    #17
    beenbetter said:

    FOR THOSE NOT WANTING TO START LONSURF-just a bit more

    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....

    Did you have low blood counts

    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
    beenbetter Member Posts: 14
    #18
    debugy2k said:

    Did you have low blood counts

    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!  

     

     

    Blood counts went down

    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
    debugy2k Member Posts: 85 Member
    #19
    beenbetter said:

    Blood counts went down

    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

    Hope you're scans show better

    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
    beenbetter Member Posts: 14
    #20
    debugy2k said:

    Hope you're scans show better

    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?

    my scan of March 1st showed

    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
    optimist777 Member Posts: 38
    #21
    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.

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