A Surprise, 3rd Chemo, LONSURF, is Working. 5-1/2 Years into this. (Stage IV)

NewHere
NewHere Member Posts: 1,429 Member
edited August 2020 in Colorectal Cancer #1

I have not been around awhile.  Saw some people passed away, a couple hit hard because I was friendly and was in contact with them, so took a bit of time off.I poke my head in now and again.  Been dealing with hiding from the virus and trying to keep on going.  

 The quick recap for those who do not know - DX in 2015 with cancer.  Had surgery, 12 rounds of FOLFOX.  More surgery in 2016 to remove part of lung.  Cancer came back everywhere a year later.  Spine, muscles, lungs.  They stopped counting lung tumors long ago. At that time I started exercising a lot.  Had to go on FOLFORI when it was no longer plausiable to watch and wait (late 2018).  FOLFORI stopped working in late 2019.  Was told Lonsurf or get into a trial.  

 Trials were closed, though I had conversations with doctors.  Decided to try Lonsurf to see if it could slow things down until I could get into a trial.  Found out this week the Lonsurf is working.  Not just slowing things down, but everything is shrinking.  I am shocked.

 People go back and forth about chemo and other treatments.  I understand the reasoning why.  The effects and other things, including support around you.  I have been fortunate in being able to deal with all the effects.  But when I was first put on FOLFORI, before the dosage got dialed in, I got violently ill.  If it was like that each time, there would have been no way to continue.

 And I lost some people I know here who decided not to go with treatment.  Their decision, but a couple were particularly frustrating in that they seemed to handle it well, though the support around them seemed to let them down.

 So with that said, please find support if you need it.  Come here and speak with others.  No matter how bad this all is, try to hang onto hope.  Obviously I had a ton of real s--ty days in these years.  But I have tried to do my best to be positive.  And to do my best to be physically strong.

 I am still in shock.  When I was told FOLFORI was no longer working, and that the other couple of options are not the greatest (one my oncologist said was so nasty they preferred for me to not even bother because of quality of life would be so bad that it really was not worth it) I was a bit thrown off.  But kept on going.  

 The above is not meant to criticize any decision regarding going on chemo, or surgery or radiation.  It is more that there may be something around the corner in all of this.  I know my next scan can deliver bad news.  But until then I will keep on pushing on.

 

 

 

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Comments

  • JmcDmc
    JmcDmc Member Posts: 8
    edited August 2020 #2
    Inspiring

    Congratulations. I wish you all the best. And it sounds like you have that in the support department. Bless them.

    i'm new here, not as a survivor of cancer, but as a survivor of caregiving.

    I've screwed up a lot since my wife's diagnosis (Duke's C; IIIB/C) of rectal cancer in November 1995.

    Most recently, I kept her home for a week between December 26, 2018 and January 2, 2019 with a small bowel obstruction following abdominal surgery. And weve done the SBO thing SO many times since 1995. I knew better than the docs did. 

    We've never had the people you speak of, but I sure wish we did. 
    Her chronic sickness following treatments in 1996 led to a life of isolation. She did a lot of bed, bathroom, couch. I did a lot of bucket duty.

    She always had good meds; I could afford all the alcohol I wanted (or needed, as I saw things).

    After exploratory laparotomy in January 2019, and removal of many surgical adhesions and most of her irradiated small bowel, 2020 has been our best year in decades.

    That and I can now say 'Hi. I'm Jim and I'm an alcoholic.'

    I'm also a caregiver. 

    And 25 years later, WE are still here and together.

    Jim

     

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    edited August 2020 #3
    Way to go, New!

    This is good news, indeed.  You've made my day. 

    May this continue, and everything shrinks to the point of non-existence - or close to it. 

    It is great to see your fish face here on the forum. 

    Tru

  • SandiaBuddy
    SandiaBuddy Member Posts: 1,381 Member
    #4
    Great news

    Great news.  Congratulations.  May the improvements continue.

  • abita
    abita Member Posts: 1,152 Member
    #5
    Was the one they said the

    Was the one they said the quality of life would be too bad was stivarga? I a asking because my oncologist had mentioned that and after reading about it, I said no, and am now on erbutix. Which leads to my second point, thank you for letting us know how well the lonsurf is working. I didn't realize it could work so well.

  • abita
    abita Member Posts: 1,152 Member
    #6
    nd so glad to hear you are

    nd so glad to hear you are doing well!

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    edited August 2020 #7
    Wonderful

    That is wonderful news that you have something that is working.  It's important for others to hear your story because some don't know that there are other treatments out there that might just work.  Thanks for the update.

    Kim

  • Cosette24
    Cosette24 Member Posts: 14
    edited August 2020 #8
    Wonderful news. Crossing my

    Wonderful news. Crossing my fingers for good news on the next scan. 

  • Canadian Sandy
    Canadian Sandy Member Posts: 784 Member
    #9
    Fantastic news! I'm so glad

    Fantastic news! I'm so glad to hear from you and to know something is working. Keep the faith!

  • feckcancer
    feckcancer Member Posts: 189 Member
    edited August 2020 #10
    I am so very happy for you.

    I am so very happy for you. Thank you for letting us know your great news. I was so glad to see your message. Fantastic news Laughing

  • worriedson714
    worriedson714 Member Posts: 333 Member
    edited August 2020 #11
    My dad

    My dad is waiting to see if they can do his second surgery and having a hard time with things . I just told him your story to show him there is hope . So thank you for reminding him and me of that good luck hope it keeps shrinking them . 

  • NewHere
    NewHere Member Posts: 1,429 Member
    #12
    JmcDmc said:

    Inspiring

    Congratulations. I wish you all the best. And it sounds like you have that in the support department. Bless them.

    i'm new here, not as a survivor of cancer, but as a survivor of caregiving.

    I've screwed up a lot since my wife's diagnosis (Duke's C; IIIB/C) of rectal cancer in November 1995.

    Most recently, I kept her home for a week between December 26, 2018 and January 2, 2019 with a small bowel obstruction following abdominal surgery. And weve done the SBO thing SO many times since 1995. I knew better than the docs did. 

    We've never had the people you speak of, but I sure wish we did. 
    Her chronic sickness following treatments in 1996 led to a life of isolation. She did a lot of bed, bathroom, couch. I did a lot of bucket duty.

    She always had good meds; I could afford all the alcohol I wanted (or needed, as I saw things).

    After exploratory laparotomy in January 2019, and removal of many surgical adhesions and most of her irradiated small bowel, 2020 has been our best year in decades.

    That and I can now say 'Hi. I'm Jim and I'm an alcoholic.'

    I'm also a caregiver. 

    And 25 years later, WE are still here and together.

    Jim

     

    25 Years

    Jim

    Being a caregiver is tough.  25 years shows how strong you and your wife are in all of this.

    Best wishes for nothing but good things from here on out for both of you.

  • NewHere
    NewHere Member Posts: 1,429 Member
    edited August 2020 #13
    Trubrit said:

    Way to go, New!

    This is good news, indeed.  You've made my day. 

    May this continue, and everything shrinks to the point of non-existence - or close to it. 

    It is great to see your fish face here on the forum. 

    Tru

    You Know Which Word I Want To Use

    I am chuffed beyond belief !

    You know how much I love that word.  It always seems like I am saying something bad.  And my little four year old inside smiles devilishy and jumps up and down.

    Ummm, did I use it right?  

    LOL

  • NewHere
    NewHere Member Posts: 1,429 Member
    #14
    SandiaBuddy said:

    Great news

    Great news.  Congratulations.  May the improvements continue.

    Thanks Sandia

    I am keeping my fingers crossed.  Did a 2 mile run yesterday and will get on the bike trainer today to see how far I can get.  I know I am really preaching to the choir on this one with you, but the exercise has been a big part of things for me in maintaining a pretty good quality of life in all of this.  Actually very good.   Like the new avatar as always.

  • NewHere
    NewHere Member Posts: 1,429 Member
    edited August 2020 #15
    abita said:

    Was the one they said the

    Was the one they said the quality of life would be too bad was stivarga? I a asking because my oncologist had mentioned that and after reading about it, I said no, and am now on erbutix. Which leads to my second point, thank you for letting us know how well the lonsurf is working. I didn't realize it could work so well.

    Yes, Stivarga

    Stivarga was the other drug.  Basically when the FOLFORI stopped in December my Oncologist said to me to go find a trial.   She had those two drugs in the wings if needed, but before starting anything wanted to go trial route and/or see what was out there.  Depending on the trial, certain treatments within a certain period of time before the trial (or at all) could exclude you from the trial.

    When bloodwork excluded me from one trial at MSK early January, we considered going back on FOLFOX until a trial opened up.  I checked with Dana-Faber, there was nothing.  Yale had some possibilities, but the FOLFOX may or may have not excluded me based on the trials.  When that finally got sorted out, I was going to hold off on treatment and just keep on getting scanned.  Not that I was stopping treatment, but hold off as much as possible in order not to interfere with a trial.

    In May a couple of things happened - first a scan showed that one of the tumors in my lungs was getting close to interfering with my airway.  It was close to having to have radiation.  My doctor was kind of shocked, kept on asking me "Seriously?  You are not having problems breathing?"  I really didn't.  But obviously this was going to need to be addressed at some point.  The tumors were growing pretty quickly.

    The second was I got an appointment at Yale.  Trials were still closed, but it was part of the intake process.  The doctor there also was impressed with my general health and condition.  He said I should go on Lonsurf to try to slow things down and make sure I was in good condiiton by the time trials opened up.  He also said some people respond. well to it. Lastly he said he was pretty sure I would tolerate it well. He reiterated that one of the reasons Lonsurf is considered "tough" is that it is a third line drug.  By the time someone is put on it, they have gone through different chemos and surgeries, etc.  In other words, most people are already in bad shape by this point.  I am not (other than cancer everywhere ;) ).  And he was right.  It is not been bad at all.  I have been so lucky with all the chemo like that.  My wife says it is tougher than I think it is when looking at me, but there is nothing in any of the things I am on that would remotely have caused me to want to stop.  (The neuroapthy from FOLFOX was an issue at the end and the first round of FOLFORI.)

     So I went on Lonsurf.  About three weeks before my scan, I also found out I have a marker for a drug trial at Yale which is real promising.  I got lucky, about 25% of CRC patients have what they are looking for.

    So we pushed up the scan.  If the Lonsurf was stabilizing things, or slowing it down, we would have delayed the study.  With it working so well, I am not going in the trial.  Going to ride out Lonsurf.

    I have not been doing anything special.  I am exercising a lot as you know.  I do semi Keto thing - really meaning the occasional 16:8 fast.  More so just some days if I slept longer and not hungry.  Nothing special on the diet, though in general I eat healthy with not much junk food.  I have always liked vegtables and fruits.  And my wife cooks a lot of chicken, turkey, fish.  Not much red meat.  

    I wish I could figure out exactly how I lucked out this time, would pass it on.

    But I can say for me Lonsurf has been great.  Was a bit scared beforehand.  Maybe because I actually read the warnings and hearing the general thing that it is tougher.

    Hope that helps a bit.  If there is anything else I can help with, information or otherwise, please let me know.  Post here or DM if you like.

     

  • NewHere
    NewHere Member Posts: 1,429 Member
    edited August 2020 #16
    Annabelle41415 said:

    Wonderful

    That is wonderful news that you have something that is working.  It's important for others to hear your story because some don't know that there are other treatments out there that might just work.  Thanks for the update.

    Kim

    It is Amazing Kim

    I am so happily shocked.

  • NewHere
    NewHere Member Posts: 1,429 Member
    #17
    Cosette24 said:

    Wonderful news. Crossing my

    Wonderful news. Crossing my fingers for good news on the next scan. 

    Thanks Cossette

    Keeping my fingers crossed too (and for everyone else).

    Getting this news 5-1/2 years in really is a big lift.  

  • NewHere
    NewHere Member Posts: 1,429 Member
    #18
    Canadian Sandy said:

    Fantastic news! I'm so glad

    Fantastic news! I'm so glad to hear from you and to know something is working. Keep the faith!

    Thanks CS!

    You know what I have been saying, I am stubborn so I keep on going forward :)  

  • NewHere
    NewHere Member Posts: 1,429 Member
    #19
    feckcancer said:

    I am so very happy for you.

    I am so very happy for you. Thank you for letting us know your great news. I was so glad to see your message. Fantastic news Laughing

    Thanks Feck

    Biding my time with the treatments has paid off for sure.

  • NewHere
    NewHere Member Posts: 1,429 Member
    #20
    worriedson714 said:

    My dad

    My dad is waiting to see if they can do his second surgery and having a hard time with things . I just told him your story to show him there is hope . So thank you for reminding him and me of that good luck hope it keeps shrinking them . 

    Worriedson

    If there is anything I can do in adding other information or helping with questions, please ask away here or DM.  There are definate times where it is tough.  I have found that to the extent that I can push the down thoughts away it helps.  Would drag me down I think otherwise.  I am not saying I never have the "Oh man WTH?" thing happening. But I try to get past it quickly.  Watching a comedy/movie I like is one thing that works for me if something is bothering me.  

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #21
    NewHere said:

    You Know Which Word I Want To Use

    I am chuffed beyond belief !

    You know how much I love that word.  It always seems like I am saying something bad.  And my little four year old inside smiles devilishy and jumps up and down.

    Ummm, did I use it right?  

    LOL

    You are using it right

    and thankfully it is not a naughty word, but I am sure I could share a few English ones with you. 

    Tru

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