2nd Opinion from the Duke Tumor Board is in...

Kathryn_in_MN
Kathryn_in_MN Member Posts: 1,252 Member
edited March 2014 in Colorectal Cancer #1
Not really what I wanted to hear. But we don't always get that luxury. They recommend against surgery, and did not recommend other options either. The nodes are too close to my spine. They also said that they don't know if there is a benefit of removal of the nodes in my particular situation. He did speak with another surgeon (outside of tumor board) who has done surgery in a case like mine, and said he might be willing to consider it if I want to pursue it.

I'm afraid if I don't even have the back-up of the tumor board that I could have trouble with insurance if I did push it. And the risk might outweigh possible benefit.

The only study I can find for a case like mine made me think that there would be benefit to removing the nodes, as median survival jumped from 12 months to 34 months for those that had them removed vs those that did chemo or chemoradiation only. Right now I'm already 4 months out from the start of this recurrance. Scary. But the study doesn't say what kind of chemo they did. And it was published in 2007, so I'm not sure how long ago it started. If CEA is an indicator, I am responding well to FOLFIRI w/Avastin. TX #4 this Thursday, and PET/CT 20NOV to see how I am doing.

http://www.ncbi.nlm.nih.gov/pubmed/17963247

Comments

  • John23
    John23 Member Posts: 2,122 Member
    Kathryn_in_MN -
    Are you saying that you have cancer in lymph nodes near the spine?

    If so, did they suggest there was any indication that it's gotten into the
    spine, or bone structure, or just in the lymph nodes?

    Think positive.


    John


    (Link, Of Interest)
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    Kathryn
    I am sorry this wasn't what you wanted to hear. It is good your CEA indicates you are doing well with your regimen. If that study was published in 2007, would folfiri w/avastin even have been a possibility? Particularly given that the study obviously went longer than 34 months? That would put the beginning of the study prior to 2004. I don't know what chemo they would have been on. As John says, "stay positive". You are doing all the right things. You can't really look at averages because you are unique. I think it is also important that what is true today may not be true in 6 months, a year etc. i.e. they may not want to remove now but things can change + they may want to do something later. How are you feeling? You are in my thoughts.
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    AnneCan said:

    Kathryn
    I am sorry this wasn't what you wanted to hear. It is good your CEA indicates you are doing well with your regimen. If that study was published in 2007, would folfiri w/avastin even have been a possibility? Particularly given that the study obviously went longer than 34 months? That would put the beginning of the study prior to 2004. I don't know what chemo they would have been on. As John says, "stay positive". You are doing all the right things. You can't really look at averages because you are unique. I think it is also important that what is true today may not be true in 6 months, a year etc. i.e. they may not want to remove now but things can change + they may want to do something later. How are you feeling? You are in my thoughts.

    Kat.......
    Like John says...Think Positive.....something will come up...keep pushing ..something will give.....Love to you, Clift
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252 Member
    John23 said:

    Kathryn_in_MN -
    Are you saying that you have cancer in lymph nodes near the spine?

    If so, did they suggest there was any indication that it's gotten into the
    spine, or bone structure, or just in the lymph nodes?

    Think positive.


    John


    (Link, Of Interest)

    Thanks John
    Thank you for the link.

    The promising line from the information:
    "Below is a formula given by Pan Ming-ji for supplementing the righteous and banking the root during chemotherapy for malignant lymphomas."

    While I don't have Hodgkins or anything similar, the cancer is only in my lymph nodes, not in any organs.

    I like that this is something that can be used in conjunction with chemo. As much as I hate chemo (and have always fought using any drugs unless absolutely necessary), I do seem to be responding to it, with my CEA dropping from 12 to just over 3 after only two treatments. But I do not like the idea of "chemo for life" which my oncologist thinks is the solution for me.

    I'm not sure where to go to find someone to help me with Chinese medicine in my area. And I am clueless as to cost. Financially we are in awful shape due to my cancer. This limits my options for treatments too. I wanted to do acupuncture last year, but could not afford it. I have just found a community acupuncture with much lower rates, so I may be able to try it now. I would like to pursue the information you sent, and would like to look into options Chinese medicine might offer to help me keep my immune system strong and keep cancer at bay if I can get to a point where I look clear and get a chemo break. I'm hoping there is a chance to kill off the current cancer with chemo, and then try something else to keep me stronger once I reach that point - to avoid that plan (what I consider a death sentence) of chemo for life.

    I have cancer in just 3 lymph nodes. My bones are clear as far as we know. The nodes are between the heart and spine. Two of them are very close to the spine. This is pretty rare, so not a lot of data.
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252 Member
    AnneCan said:

    Kathryn
    I am sorry this wasn't what you wanted to hear. It is good your CEA indicates you are doing well with your regimen. If that study was published in 2007, would folfiri w/avastin even have been a possibility? Particularly given that the study obviously went longer than 34 months? That would put the beginning of the study prior to 2004. I don't know what chemo they would have been on. As John says, "stay positive". You are doing all the right things. You can't really look at averages because you are unique. I think it is also important that what is true today may not be true in 6 months, a year etc. i.e. they may not want to remove now but things can change + they may want to do something later. How are you feeling? You are in my thoughts.

    My thoughts too
    That is what I wonder about too - it is possible none of them had Irinotecan or Avastin.

    The decision about removing them was final - not dependent on anything that may or may not happen in time. I think there is a good chance they won't even show any cancer left when I get my scan. My CEA dropped from 12 to just over 3 with just two treatments.

    My oncologist seems to think that no matter what happens right now, I will just have new mets popping up in nodes or elsewhere as time goes on, especially if I am not on chemo. He did say that hopefully we can get me to the point of not seeing any active disease, and then give me a chemo break, while monitoring very closely - not letting me go 3 months between CEA checks again. Because I seemed totally clear from DEC to MAY (on FOLFOX till April), but had the 3 nodes with cancer pop up by July if not earlier (CEA was re-checked in August and these were already enlarged and very metabolically active, so they'd become a problem before August) he thinks this is pretty aggressive.

    When I think back, this reminds me of what I went through with my cervical cancer. I'd have a procedure, get clear margins, and then at my 3 month check, I'd be at the next stage. I worked up from ASCUS, to CIN I, CIN II, CIN III, CIS, Stage I, and finally ending at Stage II where I beat it. My OB/GYN was shocked at how aggressive it was. It took me a couple of years with many procedures, a hysterectomy, and then yet another procedure, to beat it. No radiation, no chemo.

    Too bad that with the colon cancer I started fighting at Stage IIIc and am now IV. If it is going to be aggressive, that makes the fight quite a bit harder than with earlier staging. But I'm a fighter!
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252 Member
    Buzzard said:

    Kat.......
    Like John says...Think Positive.....something will come up...keep pushing ..something will give.....Love to you, Clift

    Thanks
    I think for now I need to be patient. See what my PET/CT shows. Find out what the long-term plan based on those results is. And work on more complimentary therapies - especially anything to boost my immune system.
  • LOUSWIFT
    LOUSWIFT Member Posts: 371 Member
    hope
    I had a long conversation with my ONC PA today. In my opinion she is a great deal more intelligent then my onc who is the director of ONC. Anyway we spoke of advances. She knows of my degrees in Biochem and chemistry but we both see the key to a cure is just a protein strain away and one of the more promising systems to attack cancer in place is nano technology - kind of like microscoptic robots that act like white blood cells but see cancer as an enemy then search, locate and destroys only cancer. I know this has little to do with what you are going through but it lifted my spirits. I have never been an optimist just saw too much bad being a cop but who knows may be tomorrow or next month a break through. My Dad (actually father-in-law) I kind of adopted him when I married. My Dad died when I was 14 of heart atack but my father-in-law got colon cancer and the only treatment available many years ago was surgery. It came back spread to his liver and pancreas and he died soon after. Heck when I did treatment four years ago the treatments now were not available then. I had hope as a rookie cop/paramedic and despite the abused kids; murders; traffic deaths; wife beatings; corruption; etc. it not only makes you question faith over the years I lost hope. Then many miracles came my way. Over my years in cars and hallways, I got to deliver babies no matter what in life comes your way holding a newborn life in your hands... yea don't tell me hope is a myth! It is true for us all! Stay strong every day brings us closer to beating cancer. hugs Lou
  • pepebcn
    pepebcn Member Posts: 6,331 Member
    Kath what about if Folfiri kills totally the cancer on nodes?
    would you be candidate to surgery? , your cea has dropped lots (more than mine) so it means that the thing is working ,so if you get the nodes totally smashed by chemo....then did they say what would be the procedure?by the way when do you have your Scann?
    Cheer up Kath!
  • John23
    John23 Member Posts: 2,122 Member

    Thanks John
    Thank you for the link.

    The promising line from the information:
    "Below is a formula given by Pan Ming-ji for supplementing the righteous and banking the root during chemotherapy for malignant lymphomas."

    While I don't have Hodgkins or anything similar, the cancer is only in my lymph nodes, not in any organs.

    I like that this is something that can be used in conjunction with chemo. As much as I hate chemo (and have always fought using any drugs unless absolutely necessary), I do seem to be responding to it, with my CEA dropping from 12 to just over 3 after only two treatments. But I do not like the idea of "chemo for life" which my oncologist thinks is the solution for me.

    I'm not sure where to go to find someone to help me with Chinese medicine in my area. And I am clueless as to cost. Financially we are in awful shape due to my cancer. This limits my options for treatments too. I wanted to do acupuncture last year, but could not afford it. I have just found a community acupuncture with much lower rates, so I may be able to try it now. I would like to pursue the information you sent, and would like to look into options Chinese medicine might offer to help me keep my immune system strong and keep cancer at bay if I can get to a point where I look clear and get a chemo break. I'm hoping there is a chance to kill off the current cancer with chemo, and then try something else to keep me stronger once I reach that point - to avoid that plan (what I consider a death sentence) of chemo for life.

    I have cancer in just 3 lymph nodes. My bones are clear as far as we know. The nodes are between the heart and spine. Two of them are very close to the spine. This is pretty rare, so not a lot of data.

    Kathryn -
    I'm trying to locate a cancer center in the USA, The link to NCCAM does
    name two here, but I don't know how close you are to them.

    Perhaps a call to both, asking if they have any information as to where else
    you can go, may be worthwhile. Since they are doing WM/TCM combination
    therapies, they would be in contact with other institutions doing the same!

    TCM isn't considered that mysterious back-woods, third-world science anymore.
    Each year, more and more well respected western medicine facilities are using
    both models in an attempt to provide longevity to cancer victims.

    The TCM approach is handicapped by the desire for a more "scientific" explanation
    of the herbs used, along with some sort of guaranteed properties and dosage amounts
    stated. Unfortunately, TCM doesn't provide such "exactness"; yet it manages to
    work, and baffles the doubting continually.

    I bought a gram scale (Even Harbor Freight sells them for $10), just to make certain
    I was measuring the herbs correctly. But when I watched our own TCM doc, and
    the TCM physician at the facility where I buy herbs, measure out herbal formulas
    while filling their prescriptions, they rarely use a "scale". It's one fist-full of this,
    and a half fist-full of that.... It is not an exact amount. The actual amount of
    chemicals etc, that are in each herb, really isn't as important as the mixture of the
    type of herbs they are using, as well as the combinations of herbs in the prescription.

    Western cultures like to see exactness.... go figure? Make it in a factory, so everything's
    exact..... Like Vioxx, or anything else that's later found to kill you? I guess.....

    There are hundreds of websites that provide information regarding the use and
    experimentation of TCM with western medicine. It seems to amaze people that
    institutions like the Mayo Clinic, Johns Hopkins, the NCI, etc, all have a great
    interest in TCM.

    I always try to explain here, that it's not "Colloidal Silver", "Oxygenated water"
    and "Apricot Seeds", or any amount of other money-making brain-bubbles,
    it's a science that's lasted over four thousand years, serving billions upon
    billions of people, and is continuing to draw interest from the most scientific
    of institutions today.

    It's worth looking into; it is worth trying.


    Of Interest and hope:

    The Journal of the National Cancer Institute

    The National Center for Complementary and Alternative Medicine (NCCAM)

    I'll try to find something in your area that might provide help, but it might take
    me some time. You can try giving the clinics mentioned at those other websites
    a call and asking them. They might surprise you!

    Keep your positive mind-set!! You -will- do well!


    John
  • Lori-S
    Lori-S Member Posts: 1,277 Member

    Thanks John
    Thank you for the link.

    The promising line from the information:
    "Below is a formula given by Pan Ming-ji for supplementing the righteous and banking the root during chemotherapy for malignant lymphomas."

    While I don't have Hodgkins or anything similar, the cancer is only in my lymph nodes, not in any organs.

    I like that this is something that can be used in conjunction with chemo. As much as I hate chemo (and have always fought using any drugs unless absolutely necessary), I do seem to be responding to it, with my CEA dropping from 12 to just over 3 after only two treatments. But I do not like the idea of "chemo for life" which my oncologist thinks is the solution for me.

    I'm not sure where to go to find someone to help me with Chinese medicine in my area. And I am clueless as to cost. Financially we are in awful shape due to my cancer. This limits my options for treatments too. I wanted to do acupuncture last year, but could not afford it. I have just found a community acupuncture with much lower rates, so I may be able to try it now. I would like to pursue the information you sent, and would like to look into options Chinese medicine might offer to help me keep my immune system strong and keep cancer at bay if I can get to a point where I look clear and get a chemo break. I'm hoping there is a chance to kill off the current cancer with chemo, and then try something else to keep me stronger once I reach that point - to avoid that plan (what I consider a death sentence) of chemo for life.

    I have cancer in just 3 lymph nodes. My bones are clear as far as we know. The nodes are between the heart and spine. Two of them are very close to the spine. This is pretty rare, so not a lot of data.

    Kathryn
    Have to make this short. I was told to contact my local acupuncturists as they might be most able to put you in touch with someone in your area
  • Annabelle41415
    Annabelle41415 Member Posts: 6,728 Member
    Sorry
    Sorry you didn't get the news you were hoping for. Please keep pursuing this as you have come through other obstacles and know you can beat this too. Good luck on the upcoming PET scan.

    Kim