Inoperable colon cancer mets to Liver

kyolcu
kyolcu Member Posts: 111

Hello everyone,

I was diagnosed stage 4 colon cancer mets to liver in Feb 2016. Since then I had 26 cycle of chemo and keep getting every other week. I was told I am inoperable, having treatment at MD Anderson (treatment going well with minimum side effects) and never had a second opinion yet. I wonder if anybody had about same situation and had chance for operation. I appreciate for any advice.

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Comments

  • PamRav
    PamRav Member Posts: 337 Member
    Same.

    It seems every facility has its own protocols for  treatment.  MD Anderson is supposed to be one of the best treatment centers.  

    I was dx with stage 4 with liver mets in Dec of 2016. Since then I had chemo , FOLFOXIRI for 3 doses, tumors in liver shrunk by over 50%.   I then had a colon resection  (LAR) without an ileostomy and abalation of one liver met and resection for the other mets.  I was started on chemo again, this time Folfori and avastin , another liver mets has shown up and I'm scheduled for a liver abalation next week.   I handled the chemo well enough and  I did really well with the first surgery and anticipate the same with this upcoming surgery.   Chemo will restart once I am healed  So that's my story  

    I would imagine that surgical options depend on the locations of the tumors as well as their sizes.  second opinions are always a good idea and quizzing your existing docs may answer your concerns. 

    wishing you all the best 

  • kyolcu
    kyolcu Member Posts: 111
    Thanks for response. My chemo

    Thanks for response. My chemo regime is Avastin and 5FU called maintainance chemo. I have multiple tumors in liver. The procedure called SIRT (selective internal radiation therapy) done to the liver and still expecting some shrinking in liver. I hope one day I will have a chance to be operated.

    I wish you the best with your second surgery.

  • Bellen
    Bellen Member Posts: 281
    edited June 2017 #4
    CRC with multiple liver mets

    hello kyolcu - I have CRC with multiple liver mets.  Told inoperable and incurable.  My Onco skyped with several oncologists and liver surgeons and decided that folfiri + avastin would be my chemo option.  Have had 17 treatments every 2 wks.  First CT scan said "marked reduction" in tumours, but still multiple.  Second said slight reduction in some and still multiple.  Problem is they are dispersed throughout.  My Onco said good news about that last scan was nothing new showed.  Will have another next week.  We have not discussed any other procedure, but I was hoping that at some point, I might be able to have some procedure for the liver mets.  Not sure if you can have a  procedure if the mets are really dispersed.  He keeps saying he is looking at the liver.  This scan will show whether there has been further reduction.  He also said that small ones could still be there and not detectable on the CT scan.  Are you having oxyplatin or irinotecan with your chemo cocktail?  

    Also PamRav - would you explain folfoxfiri - did you have oxyplatin and irinotecan at same time?  And how many tumours did you have.  I believe from report that I still have multiple - some larger and many small.  Hopefully my CT will show more shrinkage.  Onco was impressed with first scan reporting marked reduction - second scan didn't seem as positive.  Wishing you both well.

  • PamRav
    PamRav Member Posts: 337 Member
    My Acronym

    is probably off, all these foxes and furis!!!  lol.  What I had was 5FU bolus and then the 46 hr pump, oxyliplatin and irinotecan all at the same time  along with plenty of IV anti-nausea drugs and a steroid  

    It seems the people with multiple liver tumors are treated with SIRT as kyolcu was, or other types of radio active spheres  Y90 

    good luck with that next CT 

     

  • Trubrit
    Trubrit Member Posts: 5,626 Member
    PamRav said:

    My Acronym

    is probably off, all these foxes and furis!!!  lol.  What I had was 5FU bolus and then the 46 hr pump, oxyliplatin and irinotecan all at the same time  along with plenty of IV anti-nausea drugs and a steroid  

    It seems the people with multiple liver tumors are treated with SIRT as kyolcu was, or other types of radio active spheres  Y90 

    good luck with that next CT 

     

    Mind boggling

    I believe the acronym for your treatment is FOLFIRINOX. Surely you can remember that, right?!!!! NOT!!!!!

    I could barely remember my name during treatment. This acronym is problably the worst of the lot. Mine was easy, FOLFOX. 

    Tru

  • kyolcu
    kyolcu Member Posts: 111
    Hi Bellen,

    Hi Bellen,

    Thank you for suggestions. i have started triple chemo regimen Irinotecan, avastin and 5FU, adter several chemo my incologist told me that my progress is very good and put me on maintenance chemo of avastin and 5FU. I feel very good now with almost none side effects.

  • Stonybrook
    Stonybrook Member Posts: 6
    Hello everyone,

    Hello everyone,

    my husband has advance rectal cancer (age 56).  I think that means stage 4 since 2015. He is on his third round of chemo now.  How ever, the result is not impressive. he just has his ct scann yesterday, and it shows nothing is shrinking. I am very scare and terrify. I don't know how many time he has. He is very weak. I don't know what else I can tell him. The doctor did said if current chemo is not working (folori + avastin), there is no other combination For treatment. I read the posts from here daily to find support and advices. Is any one have any other recommendation, option that what should I do Now. Thanks. We live in San Jose, ca and we go to Stanford for treament. 

  • gsmith53
    gsmith53 Member Posts: 27
    edited June 2017 #9

    Hello everyone,

    Hello everyone,

    my husband has advance rectal cancer (age 56).  I think that means stage 4 since 2015. He is on his third round of chemo now.  How ever, the result is not impressive. he just has his ct scann yesterday, and it shows nothing is shrinking. I am very scare and terrify. I don't know how many time he has. He is very weak. I don't know what else I can tell him. The doctor did said if current chemo is not working (folori + avastin), there is no other combination For treatment. I read the posts from here daily to find support and advices. Is any one have any other recommendation, option that what should I do Now. Thanks. We live in San Jose, ca and we go to Stanford for treament. 

    Sorry

    I don't know enough to help you. I'm just going to get my first CT after baseline on Monday. Hoping for the best for both of us. He's lasted since 2015, that's a good thing. Hopefully, he'll go allot longer. Best of luck.

  • Bellen
    Bellen Member Posts: 281
    Stonybrook - question

    I am having folfiri with avastin - had my first CT scan after 6 treatments.  Did your husband have his CT scan after 3 treatments?  I wonder if more time is needed to show if this chemo is effective, and whether you should get a second opinion of other chemos he might try.  Has he had folfox or any other chemo that others have posted on this site?  You say he is stage 4 - where has it metastasized to?  Best of luck learning about some additional options if the folfiri is not working.  I know my Onco said that eventually the tumours mutate and a new chemo has to be tried.  I hope there are other options in the future if needed.

  • kyolcu
    kyolcu Member Posts: 111
    Stoneybrook question

    I suggest meditation for your husband in order to get strength back. I heard a lot of good things about meditation. Although my strength is good, I will also try to find a meditation class In order to strength the immune system. I also walk about 3 miles a day 3-4 days a week.

  • PamRav
    PamRav Member Posts: 337 Member
    edited June 2017 #12
    Meditation

    highly recommend to everyone.  Helps get you through those pesky scans, helps get you through the chemo, helps pre-op and post op.  

  • Stonybrook
    Stonybrook Member Posts: 6
    thank you to all of you

    Thanks to all of your cares and supports. He had his ct after the 3rd treatment. he was on camptosar with the pump for 48 hrs at home before (5fu?).  

    I wish everyone in here the best,  I pray for all of you to get well and win this battle soon. 

  • blessed39
    blessed39 Member Posts: 90 Member

    Hello everyone,

    Hello everyone,

    my husband has advance rectal cancer (age 56).  I think that means stage 4 since 2015. He is on his third round of chemo now.  How ever, the result is not impressive. he just has his ct scann yesterday, and it shows nothing is shrinking. I am very scare and terrify. I don't know how many time he has. He is very weak. I don't know what else I can tell him. The doctor did said if current chemo is not working (folori + avastin), there is no other combination For treatment. I read the posts from here daily to find support and advices. Is any one have any other recommendation, option that what should I do Now. Thanks. We live in San Jose, ca and we go to Stanford for treament. 

    Hi Stonybrook. I also had

    Hi Stonybrook. I also had stage four colon cancer and I am still alive and well. If you would like to read my story

    "How I Beat Stage Four Colon Cancer" just go to my page and open my blog and the story is there. God bless you and yours blessed39

     

  • JanJan63
    JanJan63 Member Posts: 2,478

    thank you to all of you

    Thanks to all of your cares and supports. He had his ct after the 3rd treatment. he was on camptosar with the pump for 48 hrs at home before (5fu?).  

    I wish everyone in here the best,  I pray for all of you to get well and win this battle soon. 

    There's got to be more

    There's got to be more options for him to try. The good part is that it's not getting worse? If he can keep it in check that might be the best case scenario until something that works comes along. I hope for the best for him. I've heard stories of people who seemed like all hope was lost and then they rally and things turn around. I pray that your husband will find this happening for him.

    Jan 

  • Joan M
    Joan M Member Posts: 409
    I had ablation and also Theraspheres for liver mets

    I was diagnosed with stage 4 colon cancer in February 2016.  I had 20 tumor in my liver and 12 in my lungs.  The doctors told me I had 6 to 18 months, it's been 15 so far and I am feeling much better than I did at diagnosis. 

    I was on chemo for almost a year before they agreed to to any other procedures.  Not sure why they waited so long to use these targeted treatments to get rid of the liver tumors, but am glad they finally did.  I was told from the begining, they could operate and get rid of the colon tumor, except there were so many tumors in my my liver they had to start me on chemo right away.   I have not had any surgery. the colon tumor shrunk and is not visible on the scans after all the chemo, and finally they used ablation on the left lobe of my liver, and the radioactive beads on the right side of my liver.  I still have small tumors in my lungs, am waiting to see what they are willing to do to get rid of those.  

    Ask your doctor about the possibility of those procedures for yourself.   sometimes you have to be very persistent in getting the procedures done.  It seems like if you are a Stage 4 patient, they don't try as hard to get you better, because they say you can't be "cured".

    Good luck! 

    Joan 

  • kyolcu
    kyolcu Member Posts: 111
    edited June 2017 #17
    Joan M said:

    I had ablation and also Theraspheres for liver mets

    I was diagnosed with stage 4 colon cancer in February 2016.  I had 20 tumor in my liver and 12 in my lungs.  The doctors told me I had 6 to 18 months, it's been 15 so far and I am feeling much better than I did at diagnosis. 

    I was on chemo for almost a year before they agreed to to any other procedures.  Not sure why they waited so long to use these targeted treatments to get rid of the liver tumors, but am glad they finally did.  I was told from the begining, they could operate and get rid of the colon tumor, except there were so many tumors in my my liver they had to start me on chemo right away.   I have not had any surgery. the colon tumor shrunk and is not visible on the scans after all the chemo, and finally they used ablation on the left lobe of my liver, and the radioactive beads on the right side of my liver.  I still have small tumors in my lungs, am waiting to see what they are willing to do to get rid of those.  

    Ask your doctor about the possibility of those procedures for yourself.   sometimes you have to be very persistent in getting the procedures done.  It seems like if you are a Stage 4 patient, they don't try as hard to get you better, because they say you can't be "cured".

    Good luck! 

    Joan 

    Joan's comment

    Hi Joan, thanks for information. It looks like you and I diagnosed at the same time February 2016. I am having maintenance chemo of avastin and 5FU with minimum side effects. I feel better than before like you mentioned as well. I never had surgery but they did SIRT (Selective internal radiation therapy), entering from the groin area tarketing to the liver. They told me that positive results will be seen in about 6 months which is the time of my next CT scanning. My colon tumor size is not decreasing significantly. I hope one day they be able to have surgery on me. I also never had second opinion because I always thought it is one of the best hospital in US.

    Thank you!!

  • Stonybrook
    Stonybrook Member Posts: 6
    Hi Joan M

    hello Joan,

    thanks for the information. It is grear news for us to fight for cancer. My husband was told today at the hospital:  there is no other treatment for you. enjoy the rest of your days. 

    I am sad and very disappointed!  Can you please let me know which hospital or cancer center you got your treatment?  I will call them up and ask for solution. 

    Thanks

    fion

  • Joan M
    Joan M Member Posts: 409
    kyolcu said:

    Joan's comment

    Hi Joan, thanks for information. It looks like you and I diagnosed at the same time February 2016. I am having maintenance chemo of avastin and 5FU with minimum side effects. I feel better than before like you mentioned as well. I never had surgery but they did SIRT (Selective internal radiation therapy), entering from the groin area tarketing to the liver. They told me that positive results will be seen in about 6 months which is the time of my next CT scanning. My colon tumor size is not decreasing significantly. I hope one day they be able to have surgery on me. I also never had second opinion because I always thought it is one of the best hospital in US.

    Thank you!!

    So good you are doing well!

    My oncologists have all said they don't think I should surgery to remove the area in my colon where the tumor originated.  Today my oncologist said he would only recommend surgery if I had a tumor that was causing problems. I would like to have the surgery to minimize the possibility of the tumor recurring.  However, because I am stage 4, they all say the cancer "always comes back".  Hearing that always upsets me.

    I am trying hard to get healthy and beat this and part of that is maintaining a positive attitude.  I know they are talking statistics, but I have seen others on this site who had stage 4 and have been told they are either NED, in remission or "cured".  I want to get to that point.    

     

     

  • Joan M
    Joan M Member Posts: 409

    Hi Joan M

    hello Joan,

    thanks for the information. It is grear news for us to fight for cancer. My husband was told today at the hospital:  there is no other treatment for you. enjoy the rest of your days. 

    I am sad and very disappointed!  Can you please let me know which hospital or cancer center you got your treatment?  I will call them up and ask for solution. 

    Thanks

    fion

    This is my 2nd attempt to answer your question.

    I responded to your comment at length and it didnt post.  So here's a shorter version:

    I have recieved all my chemo treatments at Essentia Health Cancer Center in Fargo, ND.  Their phone number is (701)364-8910.  

    Dr. Richard Coursey performed the microwave ablation and the SIRT (radioactive beads or Theraspheres) were done at Essentia Hospital on 32nd Avenue in Fargo, ND.  Dr. Coursey's office is in the same building as the hospital.  He is from Texas and trained at MD Anderson Cancer Center in Houston before moving to Fargo.  The main phone line for Essentia is (701) 364-8000. They would put you through to Coursey's office.    

    Good Luck! 

  • kyolcu
    kyolcu Member Posts: 111
    After having maintenance

    After having maintenance chemo of Avastin and 5FU for about a year, today my Oncologist told me to go back to triple chemo(forforin) adding Irenotecan because CEA and ALP were high for couple months.