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Thread: Really worried! Husband mets have come back third time

  1. #1
    Newbie New User
    Join Date
    Jan 2017

    Really worried! Please help! Husband mets have come back third time

    Hi all
    My husband was dx in Oct 2014 with stage 4 colon cancer with mets in his lungs, he was only 40!! to cut a long story short he gas has various surgeries to lungs and bowel and chemos! He has recently had his mets come back again in his liver and lungs! He has been offered Lonsurf and is starting next week. I have been reading stuff about lonsurf and it doesn't look that great, with people generally not having any good results.
    Does anyone know anyone or has personal experience of lonsurf? At the mo I am worried he will be gone within the next year.
    Last edited by Shazmun; 01-12-2017 at 07:32 PM.

  2. #2
    Top User mojo's Avatar
    Join Date
    Apr 2010
    Hi Sharon, I am also a Sharon. I'm sorry I don't have much information on lonsurf as my husband passed away 5 yrs ago. But I'm sure someone will come on here with information for you soon. Just wanted to let you know that we care and hoping for the very best. Sharon a.k.a. mojo

  3. #3
    Newbie New User
    Join Date
    Jan 2017
    Thank you so much for your reply! As you can imagine we are going through a tough time at the moment. It's good to talk to people who know exactly how I feel! Xxx

  4. #4
    Senior User
    Join Date
    May 2014
    Sharon. Are you in the US? You need to go for a second opinion at a big teaching hospital or NCI cancer center (if the the US).
    He needs to do the genomic testing of the tumor to find out if his cancer is MSI or MSS (or has he done that already). There are trials in the US for the CRC including many immunotherapy trials. Here is the link to all immunotherapy trials for RCR http://www.cancerresearch.org/cancer...orectal-cancer.

    Longsurf looks fine to me in terms that it starves cancer cells of DNA building blocks, so cancer cells cannot build their daughter cells. I sent you a PM.
    66y female, dx @43 in 1992 - DLBCL (aggressive lymphoma) CHOP x 6, rads x 20. 2007- Follicular Lymphoma (FL) grade1-2, stage 2, rads x 20. 2013 relapsed FL, grade 1-2, stage 4. R-bendamustine x 6. Finished Jan 2015. Rituxan maintenance till 2017. 11/2014 bladder cancer, surgery end of Jan 2015.

  5. #5
    Newbie New User
    Join Date
    Jan 2017
    No we are in the UK and lonsurf is pretty new here. He did have genetic testing to confirm the Kras gene, I can't remember if he had it or not, we are having a meeting with the oncologist on Monday so hoping we can get a few more answers regarding the treatment and what other options there may be if the lonsurf doesn't work x

  6. #6
    Hubby did Lonsurf. He was so sick after taking it, they had to admit him to the hospital. He then tried a lower dose (1/2 of does taken before) and got as sick and had to be hospitalized again. So many people seem to benefit from it. I hope your husband responds well to it. I have read that some people have and it is suppose to be great if you can tolerate it. Thoughts and prayers for you.
    Hubby diagnosed in 2005 with Stage IV, January...Journey on this road has had some major obstacles ..... God continues to help us endure each one.... enjoying life and doing as much as possible!

    My Carolina Cowboy gained his angel wings in August, 2017, 11 1/2 years with Stage IV. It was an amazing journey on this bumpy road. His attitude in fighting this beast was like no other. He did not want anyone's sympathy or pity so much that a lot of our friends did not even know he was in this battle. Many, many thanks to our super oncologist, surgeons, radiologists, staff, and etc. Most thankful to our God above for letting my soulmate be with me all this time! Amazingly, most of the time in this fight was great! We enjoyed trail riding every chance we had to go and so many other things that life offered to us. Even took a few rides with a 5FU pack. My cowboy was a tough one, John Wayne had nothing on him!

    Don't give up! Keep the fighting attitude!! Blessings to all!! May a cure be found!!


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