Cancer more extensive than i thought

eric38
eric38 Member Posts: 583
edited March 2014 in Colorectal Cancer #1
Just sat down and had my first detailed discussion with the oncologist. I thought my problem was confined to the liver but apparently it is all over my body. Pelvic,aortic,abdominal lymphs + abdominal cavity and fatty tissue. He gave me the non curable and putting out the fire speech. He did say it is still possible to live for years but it will eventually catch up with me. Man, I`m sorry I asked. Ignorance is bliss. I am still trying to maintain a positive attitude but this is definitely an emotional set back. I have not given up, this just makes it harder to stay positive. I will continue to fight and hope all of you are doing well.

Eric :.}
«13

Comments

  • luv3jay
    luv3jay Member Posts: 533
    Eric,
    I am so sorry to hear

    Eric,

    I am so sorry to hear that news. As hard as it is for me to read, I can't imagine being the one to have had to type it. You will be in my thoughts and prayers and you face this difficult uphill battle. Just know that there are people pulling for you.
  • eric38
    eric38 Member Posts: 583
    luv3jay said:

    Eric,
    I am so sorry to hear

    Eric,

    I am so sorry to hear that news. As hard as it is for me to read, I can't imagine being the one to have had to type it. You will be in my thoughts and prayers and you face this difficult uphill battle. Just know that there are people pulling for you.

    luv3jay - Thank you.

    luv3jay - Thank you.
  • lisa42
    lisa42 Member Posts: 3,625
    sorry
    Eric,

    I'm sorry- I can understand the feeling you have in "being sorry you asked". I know it's hard to be positive now, but positive is what you must be! Although it will be hard, you can do it! I'm sure some others on this board will chime in with telling you how they are fighting it, even with it being pretty extensive.
    Eric, I will keep you in prayer. I think sometimes just knowing others care and are pulling for you helps in your attitude. It does in me, anyhow! My friends and family were really great for the first 6 mos to even a year. Now, though, understandably- I guess I'm "old news" and I don't hear from them very much anymore. I understand- life goes on and they don't want to hear about it much anymore. Except for a couple of close friends, that is. That's why it's so great to have this board and hook up with others. It'd be good for you, if you haven't, to try to find anyone from the board who may live close to you. I've found a couple and have spoken to them by telephone (messages and phone #s exchanged through the private message system on this board). It really is helpful to just know they're nearby and can relate.

    You take care- I'm thinking of and praying for you!
    Lisa
  • VickiCO
    VickiCO Member Posts: 917
    Eric
    You are one of the most positive people I have met on this list. I am sorry for your news. I will keep praying, as well as keep passing jokes. I know you need both.

    Many hugs, Vicki
  • snommintj
    snommintj Member Posts: 601
    sounds familiar
    Sorry about your diagnosis, it's always difficult to hear your Drs speak so bleakly. I guess we're in the same boat. You trumped me on the aorta involvement, that's hardcore. I have a small tumor about two inches away from my aorta but it's not involved yet. I responded really well to folfox w avastin the first time around, so I'm hoping for another good response. I have already began my own treatment that I take while on chemo. I've added some new tricks this go around. Maybe this will help, maybe not, but I feel good about it. I start everyday with fresh juice. 4-6 lemons, fresh ginger, spinach, beet, carrot, apple, and now kudzu. I take vitamin b complex, vitamin d, milk thistle, and now resveratrol. I've been taking 160-200 mg for the last month or so, I've ramped it up to about 1 gram per day. I have been feeling absolutely fantastic, which is why I was surprised to learn of my high level of recurrence. I have faith that the Kanzius Machine is going to revolutionize cancer treatment, it doesn't hurt that colon cancer is the initial target. I think human trials are scheduled to begin around the middle to end of 2010. Keep in mind that everything thing involved has already been EPA approved so the only thing needed is to prove that it works. That could be very swift. I guess the targeting mechanism is what needs to be figured out. If we can hang around until then, we should be in good shape.
  • CanadaSue
    CanadaSue Member Posts: 339
    The news may not be good, but you are a fighter
    Eric,

    So sorry to hear this news. And it has knocked you on your butt for a bit, but get up and keep fighting! Keep those positive thoughts going!

    My thoughts and prayers are with you!

    HUGS,

    Sue
  • Julie 44
    Julie 44 Member Posts: 476
    snommintj said:

    sounds familiar
    Sorry about your diagnosis, it's always difficult to hear your Drs speak so bleakly. I guess we're in the same boat. You trumped me on the aorta involvement, that's hardcore. I have a small tumor about two inches away from my aorta but it's not involved yet. I responded really well to folfox w avastin the first time around, so I'm hoping for another good response. I have already began my own treatment that I take while on chemo. I've added some new tricks this go around. Maybe this will help, maybe not, but I feel good about it. I start everyday with fresh juice. 4-6 lemons, fresh ginger, spinach, beet, carrot, apple, and now kudzu. I take vitamin b complex, vitamin d, milk thistle, and now resveratrol. I've been taking 160-200 mg for the last month or so, I've ramped it up to about 1 gram per day. I have been feeling absolutely fantastic, which is why I was surprised to learn of my high level of recurrence. I have faith that the Kanzius Machine is going to revolutionize cancer treatment, it doesn't hurt that colon cancer is the initial target. I think human trials are scheduled to begin around the middle to end of 2010. Keep in mind that everything thing involved has already been EPA approved so the only thing needed is to prove that it works. That could be very swift. I guess the targeting mechanism is what needs to be figured out. If we can hang around until then, we should be in good shape.

    Hey Man
    Hey Eric,
    I am sorry to hear about your new involvement...I hope you will go and get a second opinion...It is well worth it just to make sure everything is being done that is possible...Different doctors have different treatments so please go and get one..Also it will give you peace of mind...Good luck and I will keep you in my heart...You have given so much to me and everyone on this board we are all keeping you in our prayers..Keep the laughter.....JULIE
  • idlehunters
    idlehunters Member Posts: 1,787
    snommintj said:

    sounds familiar
    Sorry about your diagnosis, it's always difficult to hear your Drs speak so bleakly. I guess we're in the same boat. You trumped me on the aorta involvement, that's hardcore. I have a small tumor about two inches away from my aorta but it's not involved yet. I responded really well to folfox w avastin the first time around, so I'm hoping for another good response. I have already began my own treatment that I take while on chemo. I've added some new tricks this go around. Maybe this will help, maybe not, but I feel good about it. I start everyday with fresh juice. 4-6 lemons, fresh ginger, spinach, beet, carrot, apple, and now kudzu. I take vitamin b complex, vitamin d, milk thistle, and now resveratrol. I've been taking 160-200 mg for the last month or so, I've ramped it up to about 1 gram per day. I have been feeling absolutely fantastic, which is why I was surprised to learn of my high level of recurrence. I have faith that the Kanzius Machine is going to revolutionize cancer treatment, it doesn't hurt that colon cancer is the initial target. I think human trials are scheduled to begin around the middle to end of 2010. Keep in mind that everything thing involved has already been EPA approved so the only thing needed is to prove that it works. That could be very swift. I guess the targeting mechanism is what needs to be figured out. If we can hang around until then, we should be in good shape.

    Eric..... this is bull.....
    Eric..... this is bull..... I really really understand what you are going thru. You have still got to stay positive though. I know that is easier said than done. Please PM me if you want to talk in private. You are in my prayers

    Jennie
  • Fight for my love
    Fight for my love Member Posts: 1,522
    Hi Eric,I am so sorry to
    Hi Eric,I am so sorry to hear that.Have you ever tried to get a second opinion?Maybe this is the time to go see another oncologist.Please still stay positive and keep fighting.
  • lesvanb
    lesvanb Member Posts: 905
    Oh Eric
    I am so sorry to hear this news, and glad that you shared it with us. I've always appreciated your perseverance and positive support on this board, and send all I can to add to it. The following saying has helped me: "Courage is not the absence of fear or despair, but the strength to overcome them."

    Leslie
  • pascale
    pascale Member Posts: 17
    snommintj said:

    sounds familiar
    Sorry about your diagnosis, it's always difficult to hear your Drs speak so bleakly. I guess we're in the same boat. You trumped me on the aorta involvement, that's hardcore. I have a small tumor about two inches away from my aorta but it's not involved yet. I responded really well to folfox w avastin the first time around, so I'm hoping for another good response. I have already began my own treatment that I take while on chemo. I've added some new tricks this go around. Maybe this will help, maybe not, but I feel good about it. I start everyday with fresh juice. 4-6 lemons, fresh ginger, spinach, beet, carrot, apple, and now kudzu. I take vitamin b complex, vitamin d, milk thistle, and now resveratrol. I've been taking 160-200 mg for the last month or so, I've ramped it up to about 1 gram per day. I have been feeling absolutely fantastic, which is why I was surprised to learn of my high level of recurrence. I have faith that the Kanzius Machine is going to revolutionize cancer treatment, it doesn't hurt that colon cancer is the initial target. I think human trials are scheduled to begin around the middle to end of 2010. Keep in mind that everything thing involved has already been EPA approved so the only thing needed is to prove that it works. That could be very swift. I guess the targeting mechanism is what needs to be figured out. If we can hang around until then, we should be in good shape.

    Kanzius
    My mother is in a similar situation (mets to liver, lungs, peritoneum...) and I am also hoping that the Kanzius machine is going to be the alternative to chemo in the near future. All we have to do is hang in there! Snommintj, your regimen sounds great. A naturopath had prescribed resveratrol for my mother, along with a bunch of other supplements (lots of vitamin D, coriolus versicolor, CoQ10, and much more...) but we've had to suspend these since she had the suspected bowel obstruction and surgery. I'm looking into liquid alternatives now because she's on a semi-solid diet.

    Any idea when it will be possible to enroll in human trials for the Kanzius machine?
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    Eric, I'm in Total Shock Right Now
    Eric
    Thank you for sharing your post...I'm speechless and in shock just reading it. You know I'm pulling for you all the way...that's just so hard to believe right now.

    At one time not too long ago, I was being told that "the house was on fire." He has told me on more than one occasion that we might get to the point where there is nothing more that we could do - that's a very hard thing to wrap your mind around.

    Recently, my existing onc told me that the spots on my pleura were treatable, but not curable, so I get a feel of what you are trying to say. It was at that point, I decided to take a leap of faith and go and get a 2nd opinion. I know you're at Baylor now, and I got my RFA procedure done there, so I think they do good work. I had asked if I could seen an oncologist there, but the surgeon said I had a good onc, so I stayed with him.

    I decided to go down to UT Southwestern Medical Center...it's at 3500 Gaston Ave in Dallas. They are currently reviewing about 5 years worth of test data, medical notes, and scans to determine my next step.....these spots on my lungs have me crazy, because it's the next stop on this Crazy Colon Train - colon/liver/lungs/brain.

    I tell you what, man...for the both of us, why don't you set up an appointment down there and just see what they have to tell you...they are a teaching hospital and up to date and on the cutting edge of research down there and may can help the both of us. Right now, they've got my life in their hands, but I'm willing to chance it....there may be no better hospital in our area than this one. It would make me feel better if you would try this.

    You know you can PM me and we can talk that way...or if you want to talk, I'm open to that. I want to be able to try and provide some insight for you and ease your burden, because I do understand. I'm worried sick about you and this was devastating news.

    I've appreciated your posts and our PMs back and forth...you told me I was an inspiration, but I believe it is you who are the inspiration and not me.

    Hang in there....and think about what I said about UTSW, that cannot hurt anything. Even if they see it the same way, it will at least confirm what you've been told.

    I know you said "ignorance is bliss"...I understand that, but my belief is that I've got to know what the truth is, so "I CAN GET MY MIND RIGHT" and get after it.

    I'm praying for you and so sorry you have to deal with this mess....it just sucks for all of us out there.

    I don't know what else to say right now - just hang in until we get another opinion.

    Please keep me posted...you're a fighter like me and while we may not win, we're not going out EZ! Let's just keep trying for "extensions" to keep going, until we can figure something else out. Keep posting to the board, this will help you feel like you are not a victim. I understand your humor now and you help people in more ways than you realize.

    Your pal - Craig
  • mom_2_3
    mom_2_3 Member Posts: 952
    A good friend
    Eric,

    A good friend of ours (I have mentioned him before) had a similar diagnosis to your own with extensive lymph node involvement pretty much everywhere. He did not have abdominal cavity mets. With Folfox/Avastin alone he beat all those lymph nodes into submission (they were biopsied and positive for cc) and he has since been 5 years NED. I am praying you have a similar result. Have you looked into HIPEC?
  • PhillieG
    PhillieG Member Posts: 4,866
    Not great news
    Sorry to hear this Eric. I've never asked the "how long do I have Doc" question. I've been in treatment non-stop for 5+ years and I still have cancer. While my situation isn't the same as yours, you have to keep in mind when I first started this...crap, Avastin had not been widely used, I entered into a Phase II clinical trial one month after I started chemo. Also, Erbitux was not out there either as an option. So in less than 2 years time, both of these drugs became available to me. I pretend that I am riding this wave of technology and I just keep on riding it until something else comes out. This will most likely do me in too in the end. I can only imagine what you're going through, I know it's not easy, but take it a day at a time. That is all ANY person has, cancer or no cancer, we live day to day. We are just a little more privy to that fact. Hang in there, a new drug is right around the corner.
    -phil
  • JR
    JR Member Posts: 139
    Disturbing news
    Eric,
    Sorry to hear the disturbing news. My onc tends to tell me the short story unless I ask alot of questions, and I do. He tries to be positive but it doesn't always seem that way. For example. I told him I was thinking of going on SSDI and he encouraged me to so I could live out my last days with my family and not stress about my job. Little does he know, my last days are a long way off. My dx was not good from the start, colon cancer with my liver fully involved and several mets to both lungs and a spot on one adreenal (no spell check) gland. Keep your chin up and lets all fight this son-of-a-**** together.

    John
  • eric38
    eric38 Member Posts: 583
    Sundanceh said:

    Eric, I'm in Total Shock Right Now
    Eric
    Thank you for sharing your post...I'm speechless and in shock just reading it. You know I'm pulling for you all the way...that's just so hard to believe right now.

    At one time not too long ago, I was being told that "the house was on fire." He has told me on more than one occasion that we might get to the point where there is nothing more that we could do - that's a very hard thing to wrap your mind around.

    Recently, my existing onc told me that the spots on my pleura were treatable, but not curable, so I get a feel of what you are trying to say. It was at that point, I decided to take a leap of faith and go and get a 2nd opinion. I know you're at Baylor now, and I got my RFA procedure done there, so I think they do good work. I had asked if I could seen an oncologist there, but the surgeon said I had a good onc, so I stayed with him.

    I decided to go down to UT Southwestern Medical Center...it's at 3500 Gaston Ave in Dallas. They are currently reviewing about 5 years worth of test data, medical notes, and scans to determine my next step.....these spots on my lungs have me crazy, because it's the next stop on this Crazy Colon Train - colon/liver/lungs/brain.

    I tell you what, man...for the both of us, why don't you set up an appointment down there and just see what they have to tell you...they are a teaching hospital and up to date and on the cutting edge of research down there and may can help the both of us. Right now, they've got my life in their hands, but I'm willing to chance it....there may be no better hospital in our area than this one. It would make me feel better if you would try this.

    You know you can PM me and we can talk that way...or if you want to talk, I'm open to that. I want to be able to try and provide some insight for you and ease your burden, because I do understand. I'm worried sick about you and this was devastating news.

    I've appreciated your posts and our PMs back and forth...you told me I was an inspiration, but I believe it is you who are the inspiration and not me.

    Hang in there....and think about what I said about UTSW, that cannot hurt anything. Even if they see it the same way, it will at least confirm what you've been told.

    I know you said "ignorance is bliss"...I understand that, but my belief is that I've got to know what the truth is, so "I CAN GET MY MIND RIGHT" and get after it.

    I'm praying for you and so sorry you have to deal with this mess....it just sucks for all of us out there.

    I don't know what else to say right now - just hang in until we get another opinion.

    Please keep me posted...you're a fighter like me and while we may not win, we're not going out EZ! Let's just keep trying for "extensions" to keep going, until we can figure something else out. Keep posting to the board, this will help you feel like you are not a victim. I understand your humor now and you help people in more ways than you realize.

    Your pal - Craig

    Craig - Thank you for the
    Craig - Thank you for the support. I really appreciate it. I know I said ignorance is bliss but I also know knowledge is power. It`s still early in the game and noone has sent me home to die and there is still plenty of fight left in me. I still believe in miracles and God is above all this.

    Eric
  • eric38
    eric38 Member Posts: 583
    snommintj said:

    sounds familiar
    Sorry about your diagnosis, it's always difficult to hear your Drs speak so bleakly. I guess we're in the same boat. You trumped me on the aorta involvement, that's hardcore. I have a small tumor about two inches away from my aorta but it's not involved yet. I responded really well to folfox w avastin the first time around, so I'm hoping for another good response. I have already began my own treatment that I take while on chemo. I've added some new tricks this go around. Maybe this will help, maybe not, but I feel good about it. I start everyday with fresh juice. 4-6 lemons, fresh ginger, spinach, beet, carrot, apple, and now kudzu. I take vitamin b complex, vitamin d, milk thistle, and now resveratrol. I've been taking 160-200 mg for the last month or so, I've ramped it up to about 1 gram per day. I have been feeling absolutely fantastic, which is why I was surprised to learn of my high level of recurrence. I have faith that the Kanzius Machine is going to revolutionize cancer treatment, it doesn't hurt that colon cancer is the initial target. I think human trials are scheduled to begin around the middle to end of 2010. Keep in mind that everything thing involved has already been EPA approved so the only thing needed is to prove that it works. That could be very swift. I guess the targeting mechanism is what needs to be figured out. If we can hang around until then, we should be in good shape.

    I`m sorry. Let me clarify
    I`m sorry. Let me clarify the aortic lymph involvement. It is the lymph nodes in the perotoneal aortic region which is actually where the main blood supply from the heart runs through the abdomen. So, it is not actually near my heart but it is still not good. Basically, There is extensive involvement all through my pelvis and abdomen. The surgeon said he got all he could see but apparently there was alot left over.

    Eric
  • eric38
    eric38 Member Posts: 583
    JR said:

    Disturbing news
    Eric,
    Sorry to hear the disturbing news. My onc tends to tell me the short story unless I ask alot of questions, and I do. He tries to be positive but it doesn't always seem that way. For example. I told him I was thinking of going on SSDI and he encouraged me to so I could live out my last days with my family and not stress about my job. Little does he know, my last days are a long way off. My dx was not good from the start, colon cancer with my liver fully involved and several mets to both lungs and a spot on one adreenal (no spell check) gland. Keep your chin up and lets all fight this son-of-a-**** together.

    John

    Thanks to all of you for
    Thanks to all of you for your kind support and caring words. Don`t worry about me. I will remain positive and determined. My sense of humor has not and will never be effected by this. Cancer does not define me or anyone of us. If I let this disease rob me of my joy then it has already won and it does not deserve any credit or recognition. I will enjoy my life and hopefully enhance some others along the way.

    CANCER? - NOT IN MY HOUSE!!!!

    Eric (:.}
  • Shayenne
    Shayenne Member Posts: 2,342
    eric38 said:

    Thanks to all of you for
    Thanks to all of you for your kind support and caring words. Don`t worry about me. I will remain positive and determined. My sense of humor has not and will never be effected by this. Cancer does not define me or anyone of us. If I let this disease rob me of my joy then it has already won and it does not deserve any credit or recognition. I will enjoy my life and hopefully enhance some others along the way.

    CANCER? - NOT IN MY HOUSE!!!!

    Eric (:.}

    You....
    ...Better remain positive, and never give up! I'd go elsewhere of course as well, but don't find the dr's words as the gospel! they don't know..my onc would never give me a prognosis, as she said, "I won't say that anymore, I've had people sent out for liver surgery who I never thought would have made it through 3rd treatment" people are surprising her everyday!

    Things in the body can change all the time, and miracles do happen, you just live the way I live, day by day, and nothings going to get me down, good things will happen to you as well! I will keep you in my prayers!


    "Dream as if you'll Live forever, Live as if you'll die tomorrow"~James Dean, and one of my all-time favorite quotes :)


    Hugssss!
    ~Donna
  • taraHK
    taraHK Member Posts: 1,952
    one step ahead of the game
    So sorry to hear this news. But delighted to hear that your attitude is still so positive. I am with those who believe we just need to stay one step ahead of the game. New drugs, technologies, protocols and approaches are being developed ALL THE TIME. As a friend (caregiver) said to me, all we need to have is a lot of hope and a little more time. I'm 6 yrs since diagnosis, still alive and kicking, and planing to keep one step ahead.

    Sending all my best wishes your way

    Tara