Reoccuring liver mets just after 2months of NED

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Erinb
Erinb Member Posts: 293
edited March 2014 in Colorectal Cancer #1
So Devistating. My husband had a colon resection, partial liver resection, the rest was ablated in Oct. Then he finished up his 12th round of FOLFOX 6 on Jan 22. His recent CT scan showed new growth in his liver. We meet with the oncologist tomorrow. Does anyone know of other options? Thanks. Erin
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  • AnneCan
    AnneCan Member Posts: 3,673 Member
    #2
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    Hi Erin,
    Welcome to the
    Hi Erin,

    Welcome to the board. I am so sorry to hear of your husband's recurrance. I have liver mets; folfox did not work for me but folfiri with avastin is working well. I know others will join in with other comments + suggestions, but I just wanted to say welcome.
  • Erinb
    Erinb Member Posts: 293
    #3
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    AnneCan said:

    Hi Erin,
    Welcome to the
    Hi Erin,

    Welcome to the board. I am so sorry to hear of your husband's recurrance. I have liver mets; folfox did not work for me but folfiri with avastin is working well. I know others will join in with other comments + suggestions, but I just wanted to say welcome.

    Thanks
    Thank you for the welcome. Reading the posts have been so encouraging for me. My husband is only 36 and we have a 22 month old that keeps us full of life. After a year of chemo, procedures, a surgery and more Chemo I was hoping and praying for more than a two month break. We live in Ohio. I called James Cancer Center in Columbus to get an opinion from a radiologist and also contacted our surgeon in Pittsburgh for his opinion as well. We haven't met with his oncologist yet, but I did read the CT report and read that the ablated spots are growing and a new spot has formed in the left lobe! ERRRRR!
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #4
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    Chemo and NED
    I'm sorry to hear that things didn't go as hoped for with your husband and the mets to the liver. I do not know what the results are with doing the surgery, then the usual 12 rounds of chemo, and then being declared NED. I tend to think that doctors or patients too often jump at the first chance they have to get the title NED. I remember after I did my chemo, had surgery, then did the follow up chemo and the nurses had a party for me with a balloon and all, then a month later I was back in chemo. I actually do not think they said I was NED, they just said I finished my 12 rounds of chemo. At any rate, I know that I did not think I was done and was surprised at the celebration. So many years and even many more rounds of chemo, here I am still having some mets in my lungs that are being controlled by chemo. My quality of life is quite good most of the time. The chemo days suck but so do some regular days at work. It's a different kind of "suck". Sometimes it may take more than one round of chemo to get rid of all of the tumors. Sometimes they all don't go away. We all react differently. One can go through this for a long time and still have a very good life though, that's what I think is the most important. NED, SCHMED, as long as I feel good I'm OK with that.

    Other options may be avastin which starves tumors or erbitux that does something to them too, I don't recall what other than it's been successful for keeping things under control for me.
    I hope some of what I said was helpful Erin
    -phil
  • geotina
    geotina Member Posts: 2,111 Member
    #5
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    Hi Erin
    Just wanted to Welcome you to the board. You and your husband sure have had a tough road, only 2 months and those darn mets came back. Once you meet with your oncologist come and post a new discussion letting us know what the plan will be and perhaps some members can offer their experiences.

    You might want to check the Colon Club or Colon Cancer Alliance, they are a wealth of information.

    You might also want to Google HAI pump but I think that is only done in New York, delivers chemo directly to the liver, something like that. Several members on this board have had the HAI pump.

    Take care - Tina
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    #6
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    Dear Erin
    Dear Erin,
    Welcome to the board. You are so young to be going through this. It is good that you have a little one to continually bring joy into your lives.
    I can imagine the sadness you are feeling that NED was only 2 months. Phil really has a good grasp on living life where we are at.
    I'll be thinking of you.

    Aloha,
    Kathleen
  • dmdwins
    dmdwins Member Posts: 454 Member
    #7
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    Kathleen808 said:

    Dear Erin
    Dear Erin,
    Welcome to the board. You are so young to be going through this. It is good that you have a little one to continually bring joy into your lives.
    I can imagine the sadness you are feeling that NED was only 2 months. Phil really has a good grasp on living life where we are at.
    I'll be thinking of you.

    Aloha,
    Kathleen

    Pittsburgh surgeon
    Hi Erin

    I am sorry to hear that there is new activity in your husbands liver. Was your husbands liver surgeon or colorectal surgeon in Pittsburgh? I live in Pittsburgh (grew up in Ohio) and my colorectal surgeon is here and all my treatments were done at UPMC Hillman Cancer Center. I am also Stage IV.(2007) I was 42 at diagnosis. Please let me know if there is anything I can help with on the Pittsburgh end.

    Smiles,
    Dawn
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    #8
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    Praying
    Erin,

    I don't have answers for you, but I just want to tell you that I'm praying for you and your husband. I hope you get good news soon.

    *hugs*
    Gail
  • PamPam2
    PamPam2 Member Posts: 370 Member
    #9
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    James
    Hi Erin
    I go to the James in Columbus. They have a top notch team there for liver mets. I've got some "spots" on mine too, that for now being scanned every 3 months, the last PET showed no activity, but last CT showed a new spot. I go to James for second opinion whenever needed with my oncologist's blessing, and she is right in line with their recommendations so far. What part of Ohio are you guys in? I'm East of Zanesville here. Hope the doctors can come up with a good workable plan for your husband.
    Pam
  • vhtqm1
    vhtqm1 Member Posts: 107
    #10
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    KRAS
    ask your doctor about KRAS testing to see if some target drugs available will work.

    ed
  • Sonia32
    Sonia32 Member Posts: 1,071 Member
    #11
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    Welcome to the board
    Just wanted to welcome you into our family, I'm sorry about your husband, I hope you get some sort of plan going for him soon.
    Hugs
    sonia
  • dianetavegia
    dianetavegia Member Posts: 1,942 Member
    #12
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    Very sorry to hear this
    I wanted to welcome you, also. Praying the onc has options today.
  • Shayenne
    Shayenne Member Posts: 2,342
    #13
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    dianetavegia said:

    Very sorry to hear this
    I wanted to welcome you, also. Praying the onc has options today.

    Hi Erin!
    I was diagnosed last year, Jan 2009, and still here, as a Stage 4 cc with liver mets. I am also a patient at The James Care Research Center in Columbus, and really like it there. They are in the top 20 hospitals in the states here. My first onc told me I was inoperable, and I been through chemo, surgeries, colonostomy, blockages, in and out of that hospital all last year, and they always pulled me through. I now have another onc, since my first onc moved, and he wants to try Radio Spheres on me, blasting the tumors with these little glass beads, which he said wouldn't lead to a cure, or operable, but would give my body a much needed break from chemo, and prolongs life, and would make my quality of life better, and at this point, I'm pretty tired of chemo and ready to try something new..can't hurt I suppose! I am here in Ohio as well, if you ever need to talk, just let us know :)

    Hugsss!
    ~Donna
  • Erinb
    Erinb Member Posts: 293
    #14
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    PamPam2 said:

    James
    Hi Erin
    I go to the James in Columbus. They have a top notch team there for liver mets. I've got some "spots" on mine too, that for now being scanned every 3 months, the last PET showed no activity, but last CT showed a new spot. I go to James for second opinion whenever needed with my oncologist's blessing, and she is right in line with their recommendations so far. What part of Ohio are you guys in? I'm East of Zanesville here. Hope the doctors can come up with a good workable plan for your husband.
    Pam

    Lima
    Hi, we are near Lima. Our doctor actually got a recommendation from another oncologist from James. I think we may still seek a second opinion from a radiologist as well. The doctor recommended folfiri and erbitux. We'll see how his body gets along with that chemo. His PET showed no activity in Jan. and then the CT two months later did. I am so tired of CHEMO and I don't even take it! I am grateful to have a strong husband.
  • Erinb
    Erinb Member Posts: 293
    #15
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    dmdwins said:

    Pittsburgh surgeon
    Hi Erin

    I am sorry to hear that there is new activity in your husbands liver. Was your husbands liver surgeon or colorectal surgeon in Pittsburgh? I live in Pittsburgh (grew up in Ohio) and my colorectal surgeon is here and all my treatments were done at UPMC Hillman Cancer Center. I am also Stage IV.(2007) I was 42 at diagnosis. Please let me know if there is anything I can help with on the Pittsburgh end.

    Smiles,
    Dawn

    Hi, he had both a colorectal
    Hi, he had both a colorectal surgeon and a seperate liver surgeon at UPMC Passavant.
  • Erinb
    Erinb Member Posts: 293
    #16
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    vhtqm1 said:

    KRAS
    ask your doctor about KRAS testing to see if some target drugs available will work.

    ed

    Thanks! My husband was
    Thanks! My husband was tested for that in Pittsburgh and doesn't have it so I think they are going to try folfiri and erbitux.
  • abmb
    abmb Member Posts: 311
    #17
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    Welcome
    Welcome to the board Erin. You will get a lot of support and answers here. You can come here and vent, also. Sometimes there isn't anywhere else to express your concerns, but here you can always and someone will reply. I don't have any answers for you, but I will keep you and your husband in my prayers. Take care and God Bless.
    Margaret
  • Erinb
    Erinb Member Posts: 293
    #18
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    Shayenne said:

    Hi Erin!
    I was diagnosed last year, Jan 2009, and still here, as a Stage 4 cc with liver mets. I am also a patient at The James Care Research Center in Columbus, and really like it there. They are in the top 20 hospitals in the states here. My first onc told me I was inoperable, and I been through chemo, surgeries, colonostomy, blockages, in and out of that hospital all last year, and they always pulled me through. I now have another onc, since my first onc moved, and he wants to try Radio Spheres on me, blasting the tumors with these little glass beads, which he said wouldn't lead to a cure, or operable, but would give my body a much needed break from chemo, and prolongs life, and would make my quality of life better, and at this point, I'm pretty tired of chemo and ready to try something new..can't hurt I suppose! I am here in Ohio as well, if you ever need to talk, just let us know :)

    Hugsss!
    ~Donna

    Hi Donna!
    You have been
    Hi Donna!
    You have been through so much in 1 year. I have heard about the radio spheres. You will have to let me know how that goes. I will keep you in my thoughts and prayers. By the way I love the picture. We used to party in Columbus and had great times! I really like the James center too. My husband doesn't want to travel there every other week to get his treatment so we are staying with the oncologist here close to town.
  • Shayenne
    Shayenne Member Posts: 2,342
    #19
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    Erinb said:

    Hi Donna!
    You have been
    Hi Donna!
    You have been through so much in 1 year. I have heard about the radio spheres. You will have to let me know how that goes. I will keep you in my thoughts and prayers. By the way I love the picture. We used to party in Columbus and had great times! I really like the James center too. My husband doesn't want to travel there every other week to get his treatment so we are staying with the oncologist here close to town.

    Thank You!
    For the compliment! what makeup does for a woman, eh?? LOL!

    I will let you know how the spheres went, and hope it isn't real painful. I just hope they knock you out through it, I don't like being awake for procedures like this.

    I live 2 hours away from Columbus, and my wonderful hubby has been driving me back and forth every other week for my treatments, since Feb of 2009. I know we could sure use a break, but I just didn't want to be stuck with these little country hospitals around me here in Ohio either, I just wanted to be somewhere where they actually knew what they were doing. The hospital that is 30 miles from me had nurses who have never even seen a port before, so you know I sure didn't want to be there...LOL!

    Hugsss!
    ~Donna
  • Nana b
    Nana b Member Posts: 3,030 Member
    #20
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    abmb said:

    Welcome
    Welcome to the board Erin. You will get a lot of support and answers here. You can come here and vent, also. Sometimes there isn't anywhere else to express your concerns, but here you can always and someone will reply. I don't have any answers for you, but I will keep you and your husband in my prayers. Take care and God Bless.
    Margaret

    So sorry
    Folfox with Avastin worked for me. That and eating right, Plus taking vitamins. Hope he gets it under control!
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #21
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    Welcome :)
    Hi Erin

    Looks like everyone here has you covered pretty good - lot of great advice has been given. Let's see what the onc says and take it from there.

    Just wanted to welcome you aboard and say Hi and that there is always good information here from the folks who have served on the front lines of the battle.

    I will be following your story and am sending you best wishes as you await your appointment.

    -Craig

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