Stage 4 w/ liver mets update

midnte0708
midnte0708 Member Posts: 166
edited March 2014 in Colorectal Cancer #1
I have not posted in a long time but read the boards often. Just an update that may bring some hope for those with stage 4.
My dad was diagnosed with stage 4 (BIG) mets to liver in July 2005. (This was his 3rd reoccurance of colon cancer since 1994 but now spread to the liver.)
Doctor put him on FOLFIRI + Avastin every other week cycle and said you have 1 year to live as Liver was inoperable.
My father continued this same exact chemo regime for the last 2.5 years and recently went down to a one time per month dose. He had some slight tumor shrinkage in the first 6 months or so but since then "no change...no change...no change..." on each ct scan. Doctor is completely stunned that my father is still alive (and told him so)and said he has never seen anyting like it in his career. And is now giving him another "Look". He is consulting with the liver surgeon again (first time he was turned down for a resection) to see if there is anyway they can do a resection and also said the cancer (which has not changed much on the CT scan since July 2005) "MAY" be "calcified" or partially (dead) in the liver.
Hopefully we will know more next month when my dad meets with his onc again as to what the liver surgeon said (onc wanted to call him personally and discuss my dad's case).
So please ignore statistics and "expiration dates" ....when i first posted to the board around the time my dad was given 1 year to live everyone told me to "ignore" the doctors opinion because it's just that. I took that advice and they were right.

Comments

  • hopefulone
    hopefulone Member Posts: 1,043 Member
    #2
    Great news.. Very similar to my hubby's dx and he had the liver resection in October after being told inoperable for many months. Keep the faith. Will be keeping your dad in my prayers. Keep us posted .
    God Bless,
    Diane
  • KathiM
    KathiM Member Posts: 8,028 Member
    #3
    There are so many that surprise the treating physicians! I am glad to hear dad's doc is giving a resection another look. It is obvious that your dad has still something big to do in his life....and he is surviving to do it, whenever it is...even 30 years from now!!!!

    Thanks for the update, and the encouragement...

    Hugs, Kathi
  • NWGirl
    NWGirl Member Posts: 122 Member
    #4
    That is fantastic news!! And I agree, he has more to accomplish in this life, he is obviously not done. I will be praying that his oncologist and surgeon find a way to improve his situation even further.
  • Fergus2007
    Fergus2007 Member Posts: 109
    #5
    How does something like that happen?
    Wouldn't a pet/cat scan only light-up cancer-cells that are alive and well ... and not calcified?!
    Or was it just assumed that all of the spots showing up on the ct scan were cancer?
    As far as I know cancer cells do not calcify when they die ... but I could be wrong.
  • nudgie
    nudgie Member Posts: 1,478 Member
    #6
    It is always great to hear stories like this, but makes me sooo angry when doctors respond to patients like there is no hope.

    I can understand that being an Onc Doc is not easy because of what they are faced with each day, but they need to remember what the "patient" is facing each day as well and with sooo many new drugs and advances with Cancer drugs, there is always HOPE :)
  • midnte0708
    midnte0708 Member Posts: 166
    #7
    Fergus2007 said:

    How does something like that happen?
    Wouldn't a pet/cat scan only light-up cancer-cells that are alive and well ... and not calcified?!
    Or was it just assumed that all of the spots showing up on the ct scan were cancer?
    As far as I know cancer cells do not calcify when they die ... but I could be wrong.

    He has not had the PET scan. I think that "lights" up the cancer but he has only had a CT scan every 3 months. I think the CT just detects the "mass" ...you don't know if it is dead or alive. Doc mentioned the possible "calcification".....didn't ever hear of that.
    I guess they did not do a PET because it is expensive and I'm sure insurance does not like to pay unless test is warranted.
  • jerseysue
    jerseysue Member Posts: 624 Member
    #8
    This is a great post! Thanks
  • apache4
    apache4 Member Posts: 272 Member
    #9
    I am suprised that they haven't done a PET scan. That is how I found that all the mets in my liver were "dead" and I became NED for awhile. At least, I know now that I am only battling the new ones. I was told the dead tumors form scar tissue in the liver. I have been Stage IV since June of '06 with lots of chemo and more every two weeks now. No change is a good thing. I am now on Flofiri and CPT-11 and not having too bad a time. Just tired. Moving to Tampa in two weeks and already have appt. at Moffitt Center. It will be interesting to see what they have to say. Good luck to your Dad...you are so right...the stats mean nothing.
  • Faith4Cure
    Faith4Cure Member Posts: 405 Member
    #10
    Great news! It is what we all want to hear. I believe that much of the success can be credited to being optimistic and believing! Keep on doing just that! Thanks for sharing!

    Faith
  • Fergus2007
    Fergus2007 Member Posts: 109
    #11
    midnte0708 said:

    He has not had the PET scan. I think that "lights" up the cancer but he has only had a CT scan every 3 months. I think the CT just detects the "mass" ...you don't know if it is dead or alive. Doc mentioned the possible "calcification".....didn't ever hear of that.
    I guess they did not do a PET because it is expensive and I'm sure insurance does not like to pay unless test is warranted.

    I guess all medical imaging has some flaws.

    I guess dead tumor calls can remain as calcifications then?!
    (... I've always wondered if ALL the tumor cells just split open and disappear ... )
  • midnte0708
    midnte0708 Member Posts: 166
    #12
    apache4 said:

    I am suprised that they haven't done a PET scan. That is how I found that all the mets in my liver were "dead" and I became NED for awhile. At least, I know now that I am only battling the new ones. I was told the dead tumors form scar tissue in the liver. I have been Stage IV since June of '06 with lots of chemo and more every two weeks now. No change is a good thing. I am now on Flofiri and CPT-11 and not having too bad a time. Just tired. Moving to Tampa in two weeks and already have appt. at Moffitt Center. It will be interesting to see what they have to say. Good luck to your Dad...you are so right...the stats mean nothing.

    Just curious when they first told you all tumors were dead if they said there was a need to remove the dead tissue or not.
    I have been asking my dad for a year to ask the doctor if the tumors could be "dead" tissue. The doctor either brushed off his question or i think mentioned that the dead tumors would be reabsorbed by the body if they were really dead.
    Now the doctors thoughts that the tumors could be "calcified" is something i never heard of but maybe it is the same thing as dead tissue. I don't know. My father is not one to ask many questions of the doctor unfortunately.
    Good luck to you too.
  • rmap59
    rmap59 Member Posts: 266
    #13
    This is a clear case of to NEVER EVER GIVE UP.
    Thanks for sharing.
    Robin
  • dolphinsfly
    dolphinsfly Member Posts: 16
    #14
    Fantastik news!! I was diagnosed in October 2007 with Stage 3 Colorectal cancer. It mets to liver prior to treatment starting. I am now Stage 4. Dr's don't give much hope. 2 yrs to live....Bull I say to them!! I am 43 and very much want to stay here! I have a beautiful 10 y.o. daughter I have to raise.
    I am currently in week 6 of 6 1/2 of treatment. I am getting radiation (only 5 more to go!!) and continuous IV infusion 24/7 which ends this Friday!! Then on to surgery in 6 weeks then FOLFOX-6 with Avastin.
    My Dr likes my fight...( I have new Dr that refuses to give me a prognosis) He says as long as I am fighting agressivly he will too!
  • apache4
    apache4 Member Posts: 272 Member
    #15
    dolphinsfly said:

    Fantastik news!! I was diagnosed in October 2007 with Stage 3 Colorectal cancer. It mets to liver prior to treatment starting. I am now Stage 4. Dr's don't give much hope. 2 yrs to live....Bull I say to them!! I am 43 and very much want to stay here! I have a beautiful 10 y.o. daughter I have to raise.
    I am currently in week 6 of 6 1/2 of treatment. I am getting radiation (only 5 more to go!!) and continuous IV infusion 24/7 which ends this Friday!! Then on to surgery in 6 weeks then FOLFOX-6 with Avastin.
    My Dr likes my fight...( I have new Dr that refuses to give me a prognosis) He says as long as I am fighting agressivly he will too!

    Don't believe anyone who gives you a certain amount of time! My onc told me that the average was 2 yrs. with Stage IV, but I figured I wasn't "average". I am now 1 1/2 yrs since diagnosis and going pretty strong. No one would know that I am sick by just looking at me. No one can predict how a person will respond to the treatments...I have been extremely lucky with few side effects and I plan on continuing. You can do this too! My best to you.
  • pink05
    pink05 Member Posts: 550
    #16
    Sue,

    I was wondering how your dad has been doing. I am so happy to hear this news. Statistics are just that-only statistics. Only God knows what will happen. Your father has already beaten the odds and he sounds like a very strong man. Let us know if he will have the surgery.

    God bless,

    -Lee-
  • Terri27
    Terri27 Member Posts: 3
    #17
    Thank you so much for these updates. My dad was dx with Stage 4 and multiple liver mets June 06. He's done chemo on and off and now the liver tumors are enlarging. 2/14 he goes for the Yttrium treatment. Of course the radiologist told him the expected life span, which none of the other docs had. He needs to know that he can do this and these boards give me the hope to show and tell him about. Please keep posting! You all help so many!

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