A Setback

cbcardb12
cbcardb12 Member Posts: 84
edited March 2014 in Colorectal Cancer #1
Hi All,

I haven't posted in a while. My husband had been doing wonderfully. We found out that his original CEA number was 647. By the 3rd treatment, it was 320. After the fifth treatment, it was 39!. He was doing so well, no side effects from his treatments, weight holding steady, and only tired occasionally. He has rectal cancer, and "too numerous to count" mets on his liver, with the largest being 10cm. So, they took x-rays & CT scans last week to see how he was coming along. They won't do a pet scan until after his 6th treatment of avastin. He went in today for his regular treatment and the onc dr. told him that the "tumor" is growing. I didn't go with him & he isn't home yet, so I'm not certain if it's all of the tumors or just the largest one that's growing, but they decided to add another chemo drug to his regimen. It's the one that causes neuropathy. I can tell that he is down, and although I am a little surprised, I'm still very hopeful that this beast can be beaten. I put in another call at Memorial Sloan-Kettering, because they have his records but say they can't see him while still under treatment. My question is: Does the fact that the tumor continued to grow mean that there's nothing to stop it because I think the treatment regimen he is on is the first line of defense treatment, or does it mean he just needs extra help in this fight. I'm a little confused by it all. Really need your wonderful words of encouragement!

Carolyn

Comments

  • lisa42
    lisa42 Member Posts: 3,625 Member
    #2
    radiation or RFA
    Hi,

    I'm sorry to hear your husband's tumor is growing. I'd check into alternate methods to treat the tumor, especially if indeed it is the one tumor. RFA (radio frequency ablation), cyberknife, stereotactical radiation are all other methods of getting rid of a tumor (other than surgery, if the chemo isn't working on it). If the chemo is working on the other tumors, then indeed, one of the above mentioned treatments may work for the one (or even more than one). Check into it as quickly as you can. Oncologists tend to do mostly chemo, so you may want to talk to a liver specialist and/or radiation oncologist (i.e. radiologist). Taking a recent CT scan or MRI film if you have it would be helpful to take w/ you to these other specialists.
    Best wishes-
    Lisa
  • kimby
    kimby Member Posts: 797
    #3
    First Line of Defense
    Carolyn,

    Progressing on one chemo just means he needs a different one. I have colon canzer with mets to the liver and celiac lymph nodes. I progressed on folfox, I progressed on folfiri w/erbitux, then I had liver rads w/mitomycin c, avastin and xeloda. I'm now 'No Evidence of Active Disease'. It can happen.

    There are several treatments for the liver tumors but it sounds like they want to shrink the primary tumor in preparation for colon resection? Is this correct? So they are relying on chemo to do that. Keep trying, they'll find the right one.

    Does your husband have a team of oncologists or just a medical onc? It is really important to have a team that communicates well with each other and it should include a medical, surgical and radiation onc, and possibly an interventional onc.

    I hope this helps. Please update us when your husband gets home.

    Kimby
  • Shayenne
    Shayenne Member Posts: 2,342
    #4
    kimby said:

    First Line of Defense
    Carolyn,

    Progressing on one chemo just means he needs a different one. I have colon canzer with mets to the liver and celiac lymph nodes. I progressed on folfox, I progressed on folfiri w/erbitux, then I had liver rads w/mitomycin c, avastin and xeloda. I'm now 'No Evidence of Active Disease'. It can happen.

    There are several treatments for the liver tumors but it sounds like they want to shrink the primary tumor in preparation for colon resection? Is this correct? So they are relying on chemo to do that. Keep trying, they'll find the right one.

    Does your husband have a team of oncologists or just a medical onc? It is really important to have a team that communicates well with each other and it should include a medical, surgical and radiation onc, and possibly an interventional onc.

    I hope this helps. Please update us when your husband gets home.

    Kimby

    Carolyn......
    I have Stage 4 Colon Cancer with a tumor to my liver that I am getting treatments with chemo first, and she won't tell me anything about what she is doing with the liver yet, I know she wants to shrink these tumors, and then told me she will cross the liver bridge when we get there, right now I am doing my 6th treatment out of 12 rounds, and she is so happy well I'm doing after having a couple of hospitalization setbacks, and a crappy diet LOL...but she told me to eat anything to get that weight on....

    They can do alot with the liver now, some people have had more then half their liver cut out to get those tumors out, and it will grow itself again! there is hope for it, don't ever lose that, and keep the faith! get a wonderful liver surgeoun, but I think it's good to have those tumors as little as possible, so it be less for them to cut out :)

    Good luck in your journey with us~ we can beat this!
    ~Donna
  • cbcardb12
    cbcardb12 Member Posts: 84
    #5
    kimby said:

    First Line of Defense
    Carolyn,

    Progressing on one chemo just means he needs a different one. I have colon canzer with mets to the liver and celiac lymph nodes. I progressed on folfox, I progressed on folfiri w/erbitux, then I had liver rads w/mitomycin c, avastin and xeloda. I'm now 'No Evidence of Active Disease'. It can happen.

    There are several treatments for the liver tumors but it sounds like they want to shrink the primary tumor in preparation for colon resection? Is this correct? So they are relying on chemo to do that. Keep trying, they'll find the right one.

    Does your husband have a team of oncologists or just a medical onc? It is really important to have a team that communicates well with each other and it should include a medical, surgical and radiation onc, and possibly an interventional onc.

    I hope this helps. Please update us when your husband gets home.

    Kimby

    Thanks for the Quick Responses
    Hi Lisa & Kimby,

    Thanks for the advice & encouragement. The ct scan on my husband shows that there are more small 0 centermeter tumors in his liver & the largest tumor shrank from 10.0 to 7.0, but appears to be growing again. His lungs, bones, kidneys, etc are all clear!! Yay! However, the med onc is concerned because the tumors are still appearing although small. They have added oxyplatin to his treatment regimen (today), and so far no issues, although they have warned him that the side effects could get bad. The med onc never said that he was trying to shrink the tumors in anticipation of surgery. This was something we knew/hoped could happen and he was going to then go and have it done elsewhere.

    To answer your questions, he does not have a team of doctors, only the med onc. About a month ago I contacted Memorial Sloan-Kettering, but as I said, he can't go to them while still under his med onc care. My husband did say today that it's time to go elsewhere, so I put in a call to MSK today to see if he can go there now, or if they work with any cancer centers or practices here (Georgia). Not sure how that works but like you I feel an urgency to try someone else. The dr is nice, but is not trying to cure my husband. He is all about giving my husband 2 more years of "quality life" and then sending him home to die!

    I am doing research on other treatments, but it's hard to figure out the what, when, where's & why's. I so wish we had a team of different specialities, especially of the liver. We are talking right now, and both of us are re-starting our research for cancer centers here while waiting to see how we can get him to MSK.

    Thanks for everything,

    Carolyn
  • Julie 44
    Julie 44 Member Posts: 476 Member
    #6
    cbcardb12 said:

    Thanks for the Quick Responses
    Hi Lisa & Kimby,

    Thanks for the advice & encouragement. The ct scan on my husband shows that there are more small 0 centermeter tumors in his liver & the largest tumor shrank from 10.0 to 7.0, but appears to be growing again. His lungs, bones, kidneys, etc are all clear!! Yay! However, the med onc is concerned because the tumors are still appearing although small. They have added oxyplatin to his treatment regimen (today), and so far no issues, although they have warned him that the side effects could get bad. The med onc never said that he was trying to shrink the tumors in anticipation of surgery. This was something we knew/hoped could happen and he was going to then go and have it done elsewhere.

    To answer your questions, he does not have a team of doctors, only the med onc. About a month ago I contacted Memorial Sloan-Kettering, but as I said, he can't go to them while still under his med onc care. My husband did say today that it's time to go elsewhere, so I put in a call to MSK today to see if he can go there now, or if they work with any cancer centers or practices here (Georgia). Not sure how that works but like you I feel an urgency to try someone else. The dr is nice, but is not trying to cure my husband. He is all about giving my husband 2 more years of "quality life" and then sending him home to die!

    I am doing research on other treatments, but it's hard to figure out the what, when, where's & why's. I so wish we had a team of different specialities, especially of the liver. We are talking right now, and both of us are re-starting our research for cancer centers here while waiting to see how we can get him to MSK.

    Thanks for everything,

    Carolyn

    MSK
    Carolyn,
    Can I ask you who your doctor is at Sloan?? Because when I went for a second opinion there this doctor was great...So maybe you could request to see him...It is worth a shot...Let me know...Julie
  • kimby
    kimby Member Posts: 797
    #7
    cbcardb12 said:

    Thanks for the Quick Responses
    Hi Lisa & Kimby,

    Thanks for the advice & encouragement. The ct scan on my husband shows that there are more small 0 centermeter tumors in his liver & the largest tumor shrank from 10.0 to 7.0, but appears to be growing again. His lungs, bones, kidneys, etc are all clear!! Yay! However, the med onc is concerned because the tumors are still appearing although small. They have added oxyplatin to his treatment regimen (today), and so far no issues, although they have warned him that the side effects could get bad. The med onc never said that he was trying to shrink the tumors in anticipation of surgery. This was something we knew/hoped could happen and he was going to then go and have it done elsewhere.

    To answer your questions, he does not have a team of doctors, only the med onc. About a month ago I contacted Memorial Sloan-Kettering, but as I said, he can't go to them while still under his med onc care. My husband did say today that it's time to go elsewhere, so I put in a call to MSK today to see if he can go there now, or if they work with any cancer centers or practices here (Georgia). Not sure how that works but like you I feel an urgency to try someone else. The dr is nice, but is not trying to cure my husband. He is all about giving my husband 2 more years of "quality life" and then sending him home to die!

    I am doing research on other treatments, but it's hard to figure out the what, when, where's & why's. I so wish we had a team of different specialities, especially of the liver. We are talking right now, and both of us are re-starting our research for cancer centers here while waiting to see how we can get him to MSK.

    Thanks for everything,

    Carolyn

    Emory University
    Emory University is located in Atlanta. They are a NCI Comprehensive canzer Center and would also be a great place to check. MSK is wonderful, too. I go to U of Michigan (I have a totally FAB team!) and have already decided that if I ever need another opinion again (I was very near that a couple of months ago) I will go to U of Pitt (UPMC). I really like some of the cool things these 2 places are doing with liver mets.

    Do your research but get him to a major, NCI Comprehensive canzer Center. Self refer for a second opinion. Get a TEAM. It just isn't optional if you are stage IV and want to fight. Here is the NCI website:

    http://cancercenters.cancer.gov/cancer_centers/cancer-centers-list.html#top

    Good Luck,

    Kimby
  • cbcardb12
    cbcardb12 Member Posts: 84
    #8
    Julie 44 said:

    MSK
    Carolyn,
    Can I ask you who your doctor is at Sloan?? Because when I went for a second opinion there this doctor was great...So maybe you could request to see him...It is worth a shot...Let me know...Julie

    He Hasn't Been Assigned Any Dr. Yet
    MSK has all of his information, but he has not been assigned any dr. and we have not been up there yet. His case worker told me that they can not treat him while he is still seeing someone else. The x-ray & ct scan were supposed to be his "decision" scans. I have put in a call to the case worker at MSK to fine out the next steps. I know he still won't be a candidate for surgery on his liver, but hopefully the oxaliplatin will help to make the tiny tumors disappear. The largest one is down to 7.0 cm from 10.0 and I hope it continues to shrink.
  • cbcardb12
    cbcardb12 Member Posts: 84
    #9
    kimby said:

    Emory University
    Emory University is located in Atlanta. They are a NCI Comprehensive canzer Center and would also be a great place to check. MSK is wonderful, too. I go to U of Michigan (I have a totally FAB team!) and have already decided that if I ever need another opinion again (I was very near that a couple of months ago) I will go to U of Pitt (UPMC). I really like some of the cool things these 2 places are doing with liver mets.

    Do your research but get him to a major, NCI Comprehensive canzer Center. Self refer for a second opinion. Get a TEAM. It just isn't optional if you are stage IV and want to fight. Here is the NCI website:

    http://cancercenters.cancer.gov/cancer_centers/cancer-centers-list.html#top

    Good Luck,

    Kimby

    Yeah
    We went to Emory Winship and they were more interested in waiting until he had exhausted all chemo alternatives and then having him do clinical trials as a last resort. Neither of us got a good vibe from them, but maybe it was the dr we were dealing with. I've researched most of the NCI centers and really like a lot of them. We were getting overwhelmed with the choices, so narrowed it down to MSK. If that doesn't work, we will go someone else. We are in Atlanta, but we are from Greensboro, North Carolina, and have plenty of family near Duke University, so that is also an option.

    Believe me when I say we are not giving up. He is not down about this, just surprised that the the tumors are still appearing. We will work on this, and continue to modify his/our diet and exercise regiments. I feel certain that we will find the answers we need.

    Carolyn
  • dmdwins
    dmdwins Member Posts: 454 Member
    #10
    kimby said:

    Emory University
    Emory University is located in Atlanta. They are a NCI Comprehensive canzer Center and would also be a great place to check. MSK is wonderful, too. I go to U of Michigan (I have a totally FAB team!) and have already decided that if I ever need another opinion again (I was very near that a couple of months ago) I will go to U of Pitt (UPMC). I really like some of the cool things these 2 places are doing with liver mets.

    Do your research but get him to a major, NCI Comprehensive canzer Center. Self refer for a second opinion. Get a TEAM. It just isn't optional if you are stage IV and want to fight. Here is the NCI website:

    http://cancercenters.cancer.gov/cancer_centers/cancer-centers-list.html#top

    Good Luck,

    Kimby

    UPMC
    Kimby

    I Had my treatments at UPMC Hillman Cancer Center. They were great. I have not had to investigate liver met options as of yet and hope not to have to but good to know you are impressed with what they are doing. I asuume your info came from the liver symposium you went to. I would love for you to share the info and doctors names so I can keep them in the very,very back of my mind.

    I'm hoping that you never need to come to Pittsburgh and UPMC but know that I am here if you ever do.

    Dawn

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