Any one familiar with Lonsurf?

nj55
nj55 Member Posts: 25
in Colorectal Cancer #1

I last posted my rant about doctors that won't talk to you on Feb 3.  I have gotten my second opinion, more genetic test results and retesting and more information frm my doctor than the first 20 visits.  I also found out he had sent two different samples to two different labs for KRAS testing - and got two different results.  He had the testing repeated and I got the results today.  I do have the KRAS mutation.  Now I need more information.  He wants to put me on Lonsurf.  Everything I have read says it is essentially a last resort after everything else has failed.  The increased survival rate with Lonsurf vs. placebo is only 1.8 months and it has some serious side effects.  He says I will be around to teach next fall, but the average survival on Lonsurf was only 7 months, so his statements don't make sense to me. He has not tried anything since the mets showed up except 6 rounds of Folfiri.  I don't feel like all options have been explored and he still isn't explaining anything.

I really like the doctor I saw for a second opinion - she was straight forward, honest and willing to discuss options.  This doctor wants to return to Folfox since I had no signs of cancer during the 6 months of treatment after the initial surgery and for a year after treatment.  She thinks Folfox may have controlled it better than Folfiri. Folfiri was not reducing the cancer, but the growth was very slow or no change.  I can change clinics, the travel distance isn't much greater.

I know how I tolerate Folfox. Does anyone have experience with Lonsurf?  

Comments

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    edited February 2017 #2
    Friend

    I have a friend in England who has been on Lonsurf.  He is doing fairly well; had a couple of trips to the ER with high temps, but he has travelled, his hair is still on his head and he feels he is doing well. Scans coming up will tell. 

    Don't listen to the 'last resort' talk. Move ahead with faith and positive attitude. 

    I wish you the best. 

    TRU

  • nj55
    nj55 Member Posts: 25
    #3
    Thank you

    Thank you, TRU, for the information. It is hard to trust that doctor when I find out he is withholding information. He didn't send everything to the doctor that was doing the second opinion, including the KRAS positive genetic report. He had that report for at least 6 weeks before he even looked at it.  He was just going to assume I was negative for KRAS in choosing treatment.  I am changing doctors - for one thing his specialty is hematology, information not given on the clinic information. I found out through the teaching hospital where he teaches. I want someone who specializes in colon or at least colon and related cancers. I will talk to her when I go on Monday again.

  • beenbetter
    beenbetter Member Posts: 14
    #4
    lonsurf experience

    Have stage 4 meta colon..spread to omentum, liver..did most all of the iv thru port chemos.  Its been since Feb 2016 was diagnosed and had surgery and started the chemo..took lonsurf ..a few weeks ago started. They told me it was a last ditch effort and I was too frail for  trials. Trashed my bowel movements to some degree...lower blood counts wbc rbc hemato.   A bit tired, but nothing severe yet ie side effects except the bm's...they wont know if it works for another maybe 6 weeks...was told I had just months to live (how many? lless than 12)...mmmm wonder if anyone has stayed on it for like a year and improved??? Not many docs seem to know much about it.......

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    edited June 2017 #5
    beenbetter said:

    lonsurf experience

    Have stage 4 meta colon..spread to omentum, liver..did most all of the iv thru port chemos.  Its been since Feb 2016 was diagnosed and had surgery and started the chemo..took lonsurf ..a few weeks ago started. They told me it was a last ditch effort and I was too frail for  trials. Trashed my bowel movements to some degree...lower blood counts wbc rbc hemato.   A bit tired, but nothing severe yet ie side effects except the bm's...they wont know if it works for another maybe 6 weeks...was told I had just months to live (how many? lless than 12)...mmmm wonder if anyone has stayed on it for like a year and improved??? Not many docs seem to know much about it.......

    I don't have any helpful

    I don't have any helpful information, sorry. I just wanted to say that I hope they find something that works and works well for you. I hope you'll be one of those people that they say that to and you prove them wrong. Good luck.

    Jan

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

    lonsurf experience

    Have stage 4 meta colon..spread to omentum, liver..did most all of the iv thru port chemos.  Its been since Feb 2016 was diagnosed and had surgery and started the chemo..took lonsurf ..a few weeks ago started. They told me it was a last ditch effort and I was too frail for  trials. Trashed my bowel movements to some degree...lower blood counts wbc rbc hemato.   A bit tired, but nothing severe yet ie side effects except the bm's...they wont know if it works for another maybe 6 weeks...was told I had just months to live (how many? lless than 12)...mmmm wonder if anyone has stayed on it for like a year and improved??? Not many docs seem to know much about it.......

    Hi beenbetter,

    Hi beenbetter,

    My mom's oncologist is recommending Lonsurf as well.  Is there any updates on your situation that you can provide?

  • nj55
    nj55 Member Posts: 25
    edited October 2017 #7
    Lonesurf
    I don't have anymore information on Lonesurf.  I did switch back to Folfox,  but on the third round this time (15th total) I had a bad allergic reaction to the oxaliplatin and ended up in the hospital. Now I am back on Folfiri since April with no change in mets, but my CEA is is climbing.. I have scans again in 2 weeks to consider a change to immunotherapy with Opdivo.
    I was diagnosed with Lymch Sydrome and.miucrosattelite instability and Opdivo was just approved for use for that type of CRC. Dr. Lynch identified Lynch Syndrome at UNMC where I go for treatment and the research on this is ongoing, so I trust my doctors. I really don't know much yet, but my doctor felt I wasn't ready for Lonesurf yet.
    I know this isn't much help, but it may give you an alternative to ask about that wasn't available a month ago.

     

Discussion Boards