Lonsurf Treatment Success???

Labor of Love
Labor of Love Member Posts: 4
edited August 2016 in Colorectal Cancer #1

My husband was just offered the opportunity to try Lonsurf as a final treatment options.

He was diagnosed with Stage IV Colon Cancer in October of 2012, and has been been on several chemo drugs previously.  After six months of Stivarga, CT Scans reveal that cancer is still continuing to spread.  It's very heart breaking, as I know you all know all to well.

Lonsurf is still so very new, but wondered if anyone had experienced any positive outcomes with this line of treatment.  He just completed 6 months of Stivarga, and it only got worse.

Given that he's not on any chemo therapy drugs at that time and his pain is well managed, he's still fairly strong, and works every day.  Were trying to decide if we should try it, or stop all treatment and enjoy the time he has now.  This journey has been long and hard, and at times he has really suffered.  I don't want him to suffer any longer, so the decision is quite difficult.

We have five children.  Four are adult children, and the fifth is our amazing 10 year old son.

I know that God had it all in his hand.

Well WIshes and Blessings to all of you.

Comments

  • beaumontdave
    beaumontdave Member Posts: 1,289 Member
    #2
    Some I've read say it's not

    Some I've read say it's not so bad, some had a rough time with it, I hope they come and address your question here, but I thought I'd wish you and man strength and hope.....................Dave

  • Debbie K
    Debbie K Member Posts: 1
    edited August 2016 #3
    Lonsurf

    My husband tried Lonsurf with few side effects.  It worked for about three months and then his CEA started climbing.  It is very expensive and you can work with the manufacturer to have co-pays covered.

  • UncleBuddy
    UncleBuddy Member Posts: 1,019 Member
    #4
    I wish your husband success!

    My brother was on Lonsurf for 1.5 rounds, but he was hospitalized when he was in his 2nd round, so they had to stop. 

    It's very new, so i don't think there's a lot of info out there. What works for one person may not work for another. I hope it works for your husband. God bless.

    My brother had to stop all chemo and passed away 2 weeks ago. He fought for 5 years but it became too much.

    Lin

  • Labor of Love
    Labor of Love Member Posts: 4
    edited August 2016 #5
    UncleBuddy said:

    I wish your husband success!

    My brother was on Lonsurf for 1.5 rounds, but he was hospitalized when he was in his 2nd round, so they had to stop. 

    It's very new, so i don't think there's a lot of info out there. What works for one person may not work for another. I hope it works for your husband. God bless.

    My brother had to stop all chemo and passed away 2 weeks ago. He fought for 5 years but it became too much.

    Lin

    Thank You :)

    Thanks for your kind words....

  • Labor of Love
    Labor of Love Member Posts: 4
    #6
    beaumontdave said:

    Some I've read say it's not

    Some I've read say it's not so bad, some had a rough time with it, I hope they come and address your question here, but I thought I'd wish you and man strength and hope.....................Dave

    Thanks....

    Thanks Dave....Smile

  • Labor of Love
    Labor of Love Member Posts: 4
    #7
    Debbie K said:

    Lonsurf

    My husband tried Lonsurf with few side effects.  It worked for about three months and then his CEA started climbing.  It is very expensive and you can work with the manufacturer to have co-pays covered.

    Thanks....

    Thanks Debbie....

  • John23
    John23 Member Posts: 2,122 Member
    #8
    Labor of Love said:

    Thank You :)

    Thanks for your kind words....

    Cancer.....

    Cancer.....

    You sound like you're at the last offering of western medicine, but I haven't been keeping up with your previous posts and you haven't written a "profile"....

    If you're at the end of the line with western medicine, please read my profile and the "blog" section of my profile? It may be of interest at this point, to you both.

    Although I'm presently experiencing a major recurrence, and one that could have been avoided had my gastro doc provided a needed scope when I had first asked for one, I went from 2006 until 2015 quite nicely without the rigors and often debilitating effects of western medicine, to fight stage four colon cancer.

    I am now being pushed into a corner and forced to rely on other than surgery in an attempt to kill a major tumor. The tumor is operable and it'd be best to have it surgically removed, but there's a bureaucratic element involved that's making it almost impossible for my surgeon to do what he and I both feel is the right course of action. He's working on finding a remedy to the issues, but I'm running out of time. I had been informed November of 2015, that unless the tumor was surgically removed ASAP, at the rate is was growing I would have 3 to 12 months. It grew considerably between November and January according to the scan at that time.

    We are very limited in the western world, and only "approved" modalities have benefit of insurance and physician's legal ability to administer remedies.

    All that said, if your back is against the wall, do not give up. There is another very viable modality that is used in other countries very successfully. Click on my name and read the profile and blog.

    I am using my practitioner's formula right now, and the tumor appears to be shrinking. I will soon begin using the formula I had used from 2006 to 2008/9. I have used nothing from 2009 until recently, since I remained totally clean for that entire duration of time.

    What worked for me may not work for your husband; we're all different. But when you have run out of western medicine's options, trying something different beats not doing anything. Cancer is tough, but you do have other very viable options. (I think I'm proof of that; my physicians agree)

    I wish you both, and your family well.

    John

     

  • Takemeom
    Takemeom Member Posts: 14
    #9
    vectibix

    i had low anastomsis in 2012 , chemo then on and off xeloda which stopped working

    i have stats in my lungs, and they found (by accident) interstitual infiltrate...?

    i am scheduled to start vectibix on wednesday, but is it worth it? who survives stage 4 with metastis for how long?

     

  • beaumontdave
    beaumontdave Member Posts: 1,289 Member
    #10
    Takemeom said:

    vectibix

    i had low anastomsis in 2012 , chemo then on and off xeloda which stopped working

    i have stats in my lungs, and they found (by accident) interstitual infiltrate...?

    i am scheduled to start vectibix on wednesday, but is it worth it? who survives stage 4 with metastis for how long?

     

    People do survive stage IV cc

    People do survive stage IV cc with ongoing mets, some for many years, some ongoing with no end in sight, and some write on this blog about it Read their stories, it may help. I read about the infiltrates and the article suggested that when the chemo is withdrawn the tissue growth should stop, did that happen? Is vectibix a risk to start it up again? Is vectibix hard on people, I read on it too, and the side affects seemed way less than Xeloda. Only you know if it's worth it, but I wouldn't make any decisions while I was down or depressed. When I'm down, I just try to live in the present, get through the day. When I'm up or feeling stronger, I look ahead and make my choices. Hang in there................................Dave

  • Nsr416
    Nsr416 Member Posts: 1
    edited August 2016 #11
    apprensive about Lonsurf

    I have stage IV colon cancer with mets to lungs and liver, diagnosed almost 10 years ago.  I've had lots of chemo, radiation, seven surgeries and lost my hair 3 times.  Lonsurf and Stivarga are my last options before clinical trials.  I've already tried Stivarga and was hospitalized from the side effects.  I'm not liking what I'm hearing about Lonsurf side effects and its short-term effectiveness.  I have been treatment free, except for radiation, for almost a year, the plan being,not to exhaust final options.  Now that time is here, with two larger spots on my liver and CEA in the 90,s.  My oncologist feels treating the whole body with Lonsurf is best, I'm thinking resection of the tumors and taking my chances In hopes of a better quality of life.  This my first post.

  • Mojo1984
    Mojo1984 Member Posts: 1
    edited December 2016 #12
    John23 said:

    Cancer.....

    Cancer.....

    You sound like you're at the last offering of western medicine, but I haven't been keeping up with your previous posts and you haven't written a "profile"....

    If you're at the end of the line with western medicine, please read my profile and the "blog" section of my profile? It may be of interest at this point, to you both.

    Although I'm presently experiencing a major recurrence, and one that could have been avoided had my gastro doc provided a needed scope when I had first asked for one, I went from 2006 until 2015 quite nicely without the rigors and often debilitating effects of western medicine, to fight stage four colon cancer.

    I am now being pushed into a corner and forced to rely on other than surgery in an attempt to kill a major tumor. The tumor is operable and it'd be best to have it surgically removed, but there's a bureaucratic element involved that's making it almost impossible for my surgeon to do what he and I both feel is the right course of action. He's working on finding a remedy to the issues, but I'm running out of time. I had been informed November of 2015, that unless the tumor was surgically removed ASAP, at the rate is was growing I would have 3 to 12 months. It grew considerably between November and January according to the scan at that time.

    We are very limited in the western world, and only "approved" modalities have benefit of insurance and physician's legal ability to administer remedies.

    All that said, if your back is against the wall, do not give up. There is another very viable modality that is used in other countries very successfully. Click on my name and read the profile and blog.

    I am using my practitioner's formula right now, and the tumor appears to be shrinking. I will soon begin using the formula I had used from 2006 to 2008/9. I have used nothing from 2009 until recently, since I remained totally clean for that entire duration of time.

    What worked for me may not work for your husband; we're all different. But when you have run out of western medicine's options, trying something different beats not doing anything. Cancer is tough, but you do have other very viable options. (I think I'm proof of that; my physicians agree)

    I wish you both, and your family well.

    John

     

    My mom has the simular issue

    My mom has the simular issue and now prescribed lonsurf. What is practitioner formula?

  • dancer2
    dancer2 Member Posts: 49
    edited January 2017 #13
    apprehensive too

    This second onco i am going to just told me she would put me on lonsurf and i couldn't get it out of my mouth about all the other drugs ( i have had eleven session, three with oxy/xeloda and couldn't believe the doc stopped them, so found myself another who supposedly was going to give me 12 sessions of avastin,leucovorin, irenotecan, and folfiri with pump. She just made me go through 8, gave me a ct scan, the ten days later made me have pt scan and guess she didn't like that one new spot in the liver showed up ( i already knew i had another since July) and the report said another possible metastasis but no measurement or suv reading and something in left lobe but again, no measurement or suv reading) I always ask for surgery, get mumbles about the tiny nodules in lungs of which there are four down from six....but who the heck knows? They never have been tested...bottom line, lonsurf, and if that doesn't work then clinical trials if excepted....so i need to talk to a liver surgeon at a good center out of state according to myself because  this doc told me from the beginning i could take all the chemo's out there but is basically saying it's getting down  to the area of not much else to take.....who knows? This all started for me in Oct 15, but had to have a melanoma taken out of my left facial cheek so didn't get the colon surgery til right around Thanksgiving of 15....this year totally left me without treatment twice for a total of just about six months........not good imho....I did have a successful rfa ablation at the end of April on the one and only liver lesion, but six weeks later after being told by the radiologist it was a success and there was nothing else in the liver....had to go back to my onc who just came with his head down and told me my liver glowed and i had four new spots and ten more in the lungs........boy, when he said go and come back in three months i knew i was not..........went tp this second one (onc) and once again feel like she is giving up.......end run, I want them out.......asap....going to

    call out of state to a well known center in s. cal to see if i can get a second opinion...............neither one suggested radiation for the lung spots.....keep at it, no one else will............. 

  • Alma053
    Alma053 Member Posts: 1
    #14
    Lonsurf

    What you are experiencing with your husband is exactly what I am experiencing with mine.  My husband will be starting Lonsurf next week (Jan 2017), can you please tell me how your husband did with his treatment.

  • nonasark
    nonasark Member Posts: 1
    #15
    Alma053 said:

    Lonsurf

    What you are experiencing with your husband is exactly what I am experiencing with mine.  My husband will be starting Lonsurf next week (Jan 2017), can you please tell me how your husband did with his treatment.

    Any updates?

    Hi,

    My mom jsut started Lonsurf. I was wondering if you have any updates since January, if Lonsurf wan any help to your husband?  Thanks 

    Nona

     

  • debugy2k
    debugy2k Member Posts: 85 Member
    edited October 2017 #16
    Might start Lonsurf

    My mom's oncologist wants to start my mom on Lonsurf.  She's been on a few different combination of chemo meds for 2 years already.  Did some research on Lonsurf and it seems like it's a med that will just prolong life and not shrink tumors.  I challenged the oncologist on the pro/cons of Lonsurf and they said that's the only chemo med they have left in the hospital to try.  So they suggested my mom to go on clinical trials at Memorial Sloan Kettering.  So we're debating if we should try Lonsurf or go for clinical trials.  Anyone here have good experience with Lonsurf and its effectiveness of it?

  • debugy2k
    debugy2k Member Posts: 85 Member
    #17
    nonasark said:

    Any updates?

    Hi,

    My mom jsut started Lonsurf. I was wondering if you have any updates since January, if Lonsurf wan any help to your husband?  Thanks 

    Nona

     

    Hi Nona,

    Hi Nona,

    How's Lonsurf going for your mom?  Any good success on it?

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    edited October 2017 #18
    Very Old Post

    This is a very old post and it might be appropriate for you to start a new thread.  I've never heard of this treatment before but if you put it back up in a new thread it might be possible that others can respond.  Wishing the best for your mom.

    Kim

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