Just Found Out Lonsurf Stopped Working and Cancer Growing



  • NewHere
    NewHere Member Posts: 1,403 Member
    edited June 2021 #22
    Thank You Real Tar Hill

    It looks like there is a place close to me conducting that study.  Will ask about it if the one I am supposed to get into is closed or the doctor recommends switching (same place and doctors it looks like, though different lead doctors.)

  • NewHere
    NewHere Member Posts: 1,403 Member

    I am sorry

    I hope you are able to find a trial that helps, you are so incredibly strong! 

    Thank You Ruthmomto4

    Still working through this all.  I kind of knew at some point it could happen.  And having the scan pushed up (plus conversation with doctor a couple months ago) looked like this point was close.  But still a bummer as options narrow a bit.  I am going to keep exercising and keep on going as I play kick the can until the can fix me :)  

  • NewHere
    NewHere Member Posts: 1,403 Member
    edited June 2021 #24


    Im sorry for this turn of events but like you mentioned, maybe you did get lucky with the mutation. Im hoping hard that means you will respond well to the trial :)

    Thanks Mandie

    It looked good last year and I think they mentioned there was some positive responses, but it was all still early the last time I spoke with them.  Cannot wait until I can speak to them about it.

  • NewHere
    NewHere Member Posts: 1,403 Member
    PamRav said:


    You did have a good run with this drug.  You're the first person I've heard had such good results.  I may be headed down that road soon, how were the side effects?   
    im glad you have an actionable mutation.  I wish you great success in the trial.

    Keep running, you are such an inspiration. 

    Lonsurf Was Pretty Managable

    I had 12 rounds of FOLFOX (8 was with OX part) and 24 Rounds of FOLFORI (22 with Avastin) with about 5 months off FOLFORI before starting Lonsurf, so there was some build-up of tired I am guessing over time.  And tired was probably the biggest part for me of Lonsurf.

    Taking pills is a lot easier than dealing with the infusions and then having to be plugged in.   On FOLFOX I had every possible side effect once during treatment, all minor, execpt for neuropathy &  cold sensitivity.  I would be queasy during the week of infusion and pump, but never even vomited.  Occasional anti-nausea medication.  Ginger snaps.  I did have hiccups maybe 1/2 dozen times. It caused an abcess in a tooth.  But overall not horrific.

    FOLFORI same thing, though it made me have zombie-like periods of time.  That weird altered feeling of being awake and asleep, but not really either of them.  Would also have "flash-back" more, sometimes 9 or 10 days after being unplugged.  Indgestion also during the week on infusion.  Plus messed up sleep patterns - had it on FOLFOX but more on FOLFORI. The sickest I ever was was following my first round of FOLFORI.  Three crazy bouts of vomiting 9, 12 and 20 days (or so) following the infusion.  The second was so bad I told my wife that if this is what it was going to be like, I was done with treatment.  They had to dial it down - after that nothing other than described.

    That is just to give a sense of how I dealt with those two.  

    Lonsurf continued to make me tired - more so the second week of the cycle (5 days on, weekend off, 5 days on, 16 days off).  It messed with my sleep even more.  More nausea, but nothing that some coke or giner ale would often settle out.  Maybe took anti nausea pills 2-3 days out of any 5 days on if I was having a REAL bad week.  Never vomited.  I found it gave me more chemo brain and mood swings than the other chemos.  I could be watching some of my favorite comedies and would all of a sudden feel like crying.  So strange.  Also by the second week probably more cranky/snappy and tired.  I would know it was happening, and I would think about getting through the cycle and knowing it would be okay after the pills were done because I figured out the pattern, but even then I would question it and whether it would stop.  The hardest part during this was when the pain in my back started and impacted exercising.  Exericising less due to the pain, especially when on the up and downs during the pills, made things mentally difficult.  Not sure if that fully makes sense.  I am also not sure how much of that was solely from Lonsurf or all the chemo building up.  Almost 50 full rounds.  

    The doctor's did say I did very well with Lonsurf in terms of response and the side effects - it was really more the head games mentioned.  And even with that, I hope everyone who has Lonsurf has the results I had and the basically tolerable/managable side effects.  None of the chemo is fun, but if there was anyway Lonsurf was working for me I would gladly jump back into and take the pills forever.  Even more so because my back pain seemed to come down finally and the treatments were easier because of that.


  • PamRav
    PamRav Member Posts: 342 Member

    Thank you so much of your thorough review of Lonsurf. Your info is a great help to me.

    I've done FOLFOXFIRI at the very begining before my surgery,   FOLFIRI with Avastin after surgery.  Made it for one year NED.  Then back to the FOLFIRI with Avastin for 6 months. Next did xeloda  with Avastin as a maintenance for about 4 months, had to stop due to hand and foot.  Was able to stay off chemo another year due to a course in radiation to the lung lesions, and to covid because i put off my scan.  I finished another 6 months of FOLFOX with Avastin Dec of 2020 And I have the bad neuropathy to,prove it   Now ive got a couple of things growing on my liver.  My mets have been in both liver and lung which precluded surgical intervention. Very long story short I am going to need some sort of chemo in the near future 

    i can totally relate to your experience with FOLOFIRI and the sleep issues.  The nightmares, ugh. So awful. 

    Again thank you so much for he information. 
    all the best to you


  • NewHere
    NewHere Member Posts: 1,403 Member
    You Are Welcome

    Glad I was able to help a bit with it.  Figured the overview of all of them could maybe help give a point of perspective having gone through the things yourself.  

    All my thoughts are with you and that if you have to go to Lonsurf, it works well for you like it did for me - be for even longer :)   (I have dozens of tumors in my lungs, including one that is 6.5 cm x 6.5 and many 2cm, so I am inoperable myself.  Also 5 or so in spine and in many lymph nodes, all of which are also inoperable).

  • Helen321
    Helen321 Member Posts: 1,449 Member
    I just popped on when I heard

    I just popped on when I heard about Phillie G.  I'm really sad that you're meds aren't working.  Your sense of humor is working just great.  Keep on exercising!  Eating right and exercise are everthing with cancer.  I gave up red meat, bbq, wine and so many other things, you're so right that that's how we do things.  Now....BREATHE...okay again....BREATHE.  I'm glad you plan ahead, looking forward to reading your success!