Welcome to the new Cancer Survivors Network website! Existing members can click HERE to review the changes and new features on CSN.

Stage 4, 30 mets on liver

Twinzma
Twinzma Member Posts: 236

My husband was diagnoised on Thanksgiving afternoon. No symptoms other than occassional constipation. His CEA after 3 treatments on FolFox & Avastain has gone from 375 to 170....which to us, sounds like good news. In 3 more treatments they will repeat scans. So far on the regime he has not had any ill effects. He is gaining weight (lost 10 pounds in hospital while NPO), hearty appitite. His sensitivity to cold so far is not that bad, only lasts a couple of days. He is tired while on the the pump at home, but that subsides a few days off of it as well. 

What's waiting for us? When do you hit the wall on Folfox? 30 mets has anyone been able to be resected with that many? So many questions, so MANY fears. 

 

Comments

  • Trubrit
    Trubrit Member Posts: 5,529 **
    Welcome Twinzma

    So MANY fears!

    You have that right. And those fears never really go away, no matter how well you are doing. It is a life changing experience for the patient and for those closest to them. 

    30 mets is allot, I'll not lie. There are a few things that influence wether a met is viable for surgery; size and position being two of them. 

    It is definitely good that he is tolerating chemo so well, and gaining weight. 

    As for the FOLFOX, it hits folks on an individual basis. Some breeze through treatment, and some suffer considerably. It is accumulative, so you can never know what, when or if side effects will ramp up. Its very much a waiting game. 

    Keep visiting us here, and we'll do our best to support you and through you, your husband. 

    Tru

     

  • LSU2001
    LSU2001 Member Posts: 32
    edited January 2018 #3
    Welcome to the forum

    Again, welcome to the forum though I hate why you have to join us.  This is my first post but I have been reading this forum for quite awhile.  

    I was diagnosed in April of 2016 with rectal cancer and was staged in early May as Stage IV with around  26 mets on the liver.  I was told then that I was inoperable and that they would begin with pallative chemo radiation with 5 FU and 28 pelvic radiation treatments.  The pain of the primary tumor went away after about 2 weeks on the radiation and I was able to make it through the rest of the treatments with only damaged skin/tissue in the anal area.  That was very painful but the creams and numbing agents the Dr. prescribed really helped.  Fast forward to early January 2017.  I went for a second opinion with MD Anderson Cancer Center and was told that I was now a candidate for a 2 stage liver resection.  The first stage was in Feb. 2017 and the second in April of 2017.  All in all they ended up removing about 70% of my liver and it was able to regenerate with very few side effects due to the surgery.  

    I stated the above to let you know that just because you may be inoperable now does not mean that it cannot change.  In my case, I responded well to the Folfox + Avastin  regimen and was able to have the resection.  However, since the resection, I have had the disease progress and 7 new lesions appear on my liver in the past 3 months  and will be going back on chemo with a folfiri + Avastin regimen to hopefully control the spread.  

    In any case do not give up hope.  I was told that I would remain inoperable and that the goal was to extend life as long as possible with Chemo.  That was almost two years ago and I am still going strong even though I have not been able to totally get rid of the cancer. It seems to  be manageable for awhile.  So to answer your last question, I didn't have 30 mets but was very close to that and still was able to be resected.

    Tim

  • debugy2k
    debugy2k Member Posts: 85
    My mom is stage IV colon

    My mom is stage IV colon cancer with mets to liver as well.  So much liver tumors that they didn't even bother to count.  Been on different chemo combo for over 2 years and the liver tumors have all been gone except for 3 noticable spots.  They showed us the CT scan and compair it to 2 years ago.  HUGE difference!  The 3 noticable spots we did Y90 radiation spheres for it back in Nov 2017.  Those radiation spheres should take care of killing those 3 tumors.  Waiting on next scan to see how well it worked.

    Right now she's on lonsurf chemo pills.  Just been on 1 cycle of it so not sure how well it works for colon/liver tumors.

  • Twinzma
    Twinzma Member Posts: 236
    Trubrit said:

    Welcome Twinzma

    So MANY fears!

    You have that right. And those fears never really go away, no matter how well you are doing. It is a life changing experience for the patient and for those closest to them. 

    30 mets is allot, I'll not lie. There are a few things that influence wether a met is viable for surgery; size and position being two of them. 

    It is definitely good that he is tolerating chemo so well, and gaining weight. 

    As for the FOLFOX, it hits folks on an individual basis. Some breeze through treatment, and some suffer considerably. It is accumulative, so you can never know what, when or if side effects will ramp up. Its very much a waiting game. 

    Keep visiting us here, and we'll do our best to support you and through you, your husband. 

    Tru

     

    Thank you Tru. It's hard on

    Thank you Tru. It's hard on us. Both of our Grandmothers died from this, but that was in the 80's when there was not much hope for survival. My kids are having a hard time with this and I have them in counseling. They just turned 12 and as hard as it is for us to wrap our heads around it....I can only imagine what is going thru their minds. Glad to have found a place that I can ask questions and find support from those that are in the same situation. It's funny how our phones don't ring as much, you quickly learn who your friends really are. 

     

  • Twinzma
    Twinzma Member Posts: 236
    edited January 2018 #6
    LSU2001 said:

    Welcome to the forum

    Again, welcome to the forum though I hate why you have to join us.  This is my first post but I have been reading this forum for quite awhile.  

    I was diagnosed in April of 2016 with rectal cancer and was staged in early May as Stage IV with around  26 mets on the liver.  I was told then that I was inoperable and that they would begin with pallative chemo radiation with 5 FU and 28 pelvic radiation treatments.  The pain of the primary tumor went away after about 2 weeks on the radiation and I was able to make it through the rest of the treatments with only damaged skin/tissue in the anal area.  That was very painful but the creams and numbing agents the Dr. prescribed really helped.  Fast forward to early January 2017.  I went for a second opinion with MD Anderson Cancer Center and was told that I was now a candidate for a 2 stage liver resection.  The first stage was in Feb. 2017 and the second in April of 2017.  All in all they ended up removing about 70% of my liver and it was able to regenerate with very few side effects due to the surgery.  

    I stated the above to let you know that just because you may be inoperable now does not mean that it cannot change.  In my case, I responded well to the Folfox + Avastin  regimen and was able to have the resection.  However, since the resection, I have had the disease progress and 7 new lesions appear on my liver in the past 3 months  and will be going back on chemo with a folfiri + Avastin regimen to hopefully control the spread.  

    In any case do not give up hope.  I was told that I would remain inoperable and that the goal was to extend life as long as possible with Chemo.  That was almost two years ago and I am still going strong even though I have not been able to totally get rid of the cancer. It seems to  be manageable for awhile.  So to answer your last question, I didn't have 30 mets but was very close to that and still was able to be resected.

    Tim

    Oh Tim, you have know idea

    Oh Tim, you have know idea the load you have taken off my mind. I feel as if he can get to the point that he can have the ALLPS that we can have more time. I am so sorry that the lessions have come back, but you sound like such a fighter I would be willing to bet YOU are going to kick cancer to the curb. 

    We will definatly get another oppinion from MD or Moffitt. We stuck with our local hospital for now as at diagnosis he was told less than six months without treatment. 

  • Mikenh
    Mikenh Member Posts: 777
    You guys sound young so this

    You guys sound young so this is pretty tough stuff, especially for the kids.

    There are some treatments in Europe that I've heard of to go after a lot of small mets and this might be a possible option.

  • tanstaafl
    tanstaafl Member Posts: 1,299
    HAI?

    Two stage liver resection, ALLPS is one possible solution; the other is Hepatitc Arterial Infusion.   The best documented HAI success rate is at  Memorial Sloan Kettering.  Has anyone mentioned this?

  • Slow-runner
    Slow-runner Member Posts: 55
    LSU2001 said:

    Welcome to the forum

    Again, welcome to the forum though I hate why you have to join us.  This is my first post but I have been reading this forum for quite awhile.  

    I was diagnosed in April of 2016 with rectal cancer and was staged in early May as Stage IV with around  26 mets on the liver.  I was told then that I was inoperable and that they would begin with pallative chemo radiation with 5 FU and 28 pelvic radiation treatments.  The pain of the primary tumor went away after about 2 weeks on the radiation and I was able to make it through the rest of the treatments with only damaged skin/tissue in the anal area.  That was very painful but the creams and numbing agents the Dr. prescribed really helped.  Fast forward to early January 2017.  I went for a second opinion with MD Anderson Cancer Center and was told that I was now a candidate for a 2 stage liver resection.  The first stage was in Feb. 2017 and the second in April of 2017.  All in all they ended up removing about 70% of my liver and it was able to regenerate with very few side effects due to the surgery.  

    I stated the above to let you know that just because you may be inoperable now does not mean that it cannot change.  In my case, I responded well to the Folfox + Avastin  regimen and was able to have the resection.  However, since the resection, I have had the disease progress and 7 new lesions appear on my liver in the past 3 months  and will be going back on chemo with a folfiri + Avastin regimen to hopefully control the spread.  

    In any case do not give up hope.  I was told that I would remain inoperable and that the goal was to extend life as long as possible with Chemo.  That was almost two years ago and I am still going strong even though I have not been able to totally get rid of the cancer. It seems to  be manageable for awhile.  So to answer your last question, I didn't have 30 mets but was very close to that and still was able to be resected.

    Tim

    Mets anywhere else?

    Tim, did you have mets anywhere else?  My husband has liver, lung and peritoneal and mesenteric node involvement.  Is not a candidate for surgery or for the implanted infusion.  He just complete 12 txs of the 5Fu/Oxa/Avastin cocktails.  I am hoping that he will be a surgical candiate at some point.  Hope you continue to do well, sounds like you have that all important positive attitude!

  • Twinzma
    Twinzma Member Posts: 236
    tanstaafl said:

    HAI?

    Two stage liver resection, ALLPS is one possible solution; the other is Hepatitc Arterial Infusion.   The best documented HAI success rate is at  Memorial Sloan Kettering.  Has anyone mentioned this?

    Thank you

    I have been looking into this procedure. I just did not know which center had the best outcomes. Thank you so much! His latest scan showed most mets are shrinking only 3 have grown. The largest increse was by a 1/4 of a centermeter. Next scans which will be after 2-3 more treatments, we will be sending out his records to larger facilities. Now defininatley Sloan is at the top of my list. Thank you so much for helping!!!

     

  • PhillieG
    PhillieG Member Posts: 4,866
    debugy2k said:

    My mom is stage IV colon

    My mom is stage IV colon cancer with mets to liver as well.  So much liver tumors that they didn't even bother to count.  Been on different chemo combo for over 2 years and the liver tumors have all been gone except for 3 noticable spots.  They showed us the CT scan and compair it to 2 years ago.  HUGE difference!  The 3 noticable spots we did Y90 radiation spheres for it back in Nov 2017.  Those radiation spheres should take care of killing those 3 tumors.  Waiting on next scan to see how well it worked.

    Right now she's on lonsurf chemo pills.  Just been on 1 cycle of it so not sure how well it works for colon/liver tumors.

    Good news

    I'm glad your Mom has responded well to treatments. I hope her next scan results are very good. I've never been on Lonsurf but I have heard some good things about it.
    -phil

  • PhillieG
    PhillieG Member Posts: 4,866
    edited February 2018 #12
    tanstaafl said:

    HAI?

    Two stage liver resection, ALLPS is one possible solution; the other is Hepatitc Arterial Infusion.   The best documented HAI success rate is at  Memorial Sloan Kettering.  Has anyone mentioned this?

    HAI!

    For anyone who knows me, I'm a big fan of MSKCC. My oncologist there, Dr. Nancy Kemeny, has a remarkable 65% 10-year survival rate among her patients who have had that procedure done. I once asked her why other hospitals don't use that treatment more often. She told me It's not rocket science. Go figure

     Link to video 

  • Twinzma
    Twinzma Member Posts: 236
    PhillieG said:

    HAI!

    For anyone who knows me, I'm a big fan of MSKCC. My oncologist there, Dr. Nancy Kemeny, has a remarkable 65% 10-year survival rate among her patients who have had that procedure done. I once asked her why other hospitals don't use that treatment more often. She told me It's not rocket science. Go figure

     Link to video 

    Wow, 65%

    No I guess it's not rocket science.....but certainlly more options should be given. 65% 10 year survival, now that is something to brag about! Records are being sent. THANK YOU!

     

  • NJC
    NJC Member Posts: 72
    edited March 2018 #14
    Hi,

    Hi,

    You can not resect that many mets as it would likely take too much of the viable hepatic cells (liver cells). My late-wife was diagnosed at age 33 with 20 tumors in her liver. She did 3 months of chemo, then an isolated liver perfusion followed by implantation of HAI pump and then 3m months of chemo, and that viturally wiped out all of the mets in the liver after one year. Year two, she had the resection of left lobe and RFA of two spots on right lobe. She was off an on chemo for the remaining 5y, with the longest break being nearly a year.

     

    I suggest you reach out to David Bartlett, Chief Surgical Oncology at UPMC's Hillman Cancer Center. People come from all over the world to be treated by him. He's one of many reasons, outside of my late-wife's will to live, as to why she exceeded prognosis by nearly 4y. Bartlett is actually the one who pioneered this procedure that was mentioned above at MSK. A place he worked as well as the NIH.

     

    Best of luck!