stage iv survivors?

13

Comments

  • Doc_Hawk
    Doc_Hawk Member Posts: 685
    peterz54 said:

    liver resection
    true, but only a fraction of Stage IV get resection, so it needs to be separated out as its own graph. My wif as a stage IV does no yet know if she will be a candidate for surgery..

    Liver Resection
    Hi Peter, do you know why some patients are eligible to liver resections and others not? I've been told that I'm not a candidate but was only told that it would not fix the problem. My sister even offered a transplant, but my Oncologist said that it wouldn't work for me.

    I've printed out the graph that was linked, but I was diagnosed in 2011, does anyone have any up dated stats?
  • Doc_Hawk
    Doc_Hawk Member Posts: 685

    Preparing to do Battle
    John,
    Everyone who has been diagnosed with cancer feel just as you are feeling today. But Fear is not our friend. For me I needed to reach deep and muster all the courage, and hope I could, in order to prepare for chemo. Also for me it was preparing for all possibilities. My husband and I completed our wills, trusts, estate planning, and medical directives and then I was ready to do battle. I also had the priest give me the anointing of the sick with the words; courage, hope, and health. These became my prayer words. I used these prayerful words all through chemo anytime I felt the fear. I imagined those pacman eating the cancer cells when I felt the worst during chemo. I used these prayer words with each scan.

    Now I try to take it one step at a time. I learned from those on this board how to take one step at a time, one test at a time, one scan at a time with hope.

    Sending my prayers: Courage, Hope, and Health.
    NB

    Prayers and words of Strength
    God Bless, NB. About a week and a half after my dx, it was the first gloriously perfect weather day in Flagstaff AZ that year (2009 - 2010, we had 12 feet of snow that winter)and my best friend and I had been cruising around town on my motorcycle and after lunch we had to part company for a few hours before meeting up again for karaoke. I looked at her and said "It's a great day to be alive." Then I paused and thought a second before adding "and in January when it's snowing two feet an hour it'll still be a great day to be alive." Since that day, it has become my Mantra and I say it at least once a day. Right now it's 5:45 am, in 15 minutes I'll have been up for 24 hours and that's on top of a 4 hour night of sleep. But, it's a great day to be alive!

    God Bless

    Doc Ray
  • Doc_Hawk
    Doc_Hawk Member Posts: 685
    joemetz said:

    phillieg.... great post!
    Thanks Phillieg!

    Excellent post.
    congrats on 8 years. You are inspiration for me and others.

    I'm only 8 weeks into this, but after comparable CT scan last week, things are looking up.
    No NEW cancer. And, current mets in liver have reduced greatly.

    For my first time, i have VERY uplifting and encouraging news.

    Others... Phillieg is right, be positive. Take control of you health and don't forget to have fun and pull your family and fiends closer to you.

    and... lastly, build your faith.

    I never thought i'd say this, but my life is better today than it was 6 months ago... even though now i have (or know i have) Cancer, and am in the battle.

    Let's all fight and encourage each other.

    yes, that John guy is right... it never hurts to have a wil and be prepared... but healthy people do that.

    my best

    Joe

    Agree with Joe
    That was great post, Phil, very uplifting. And like Joe, I do not look at this as an affliction, a curse, a cross to bear or whatever. It has been a life changing event (and Dear Lord, I never appreciated what those words meant until this.) I have achieved a level of serenity which had always escaped me all of my life. Things that I used to get worked up and (no pun intended -- or maybe it is) put a knot in my colon just don't matter any more. And things where I had placed little importance are now key factors in my life.

    Sure, I'm tired and worn out all of the time; I refer to myself as a walking bio-hazard because the chemo has left the skin on the undersides of my hands and feet terribly cracked to the point where it's difficult doing simple things like typing, picking things up and sometimes walking is so agonizing that it brings tears to my eyes. But these just make me appreciate so much more the things that I was able to do in the past and make me look forward to the perfect body which I will have in the next life.

    I had to move from Flagstaff AZ to Utah into my parents house and I've had to give up the autonomy that I enjoyed while living alone, but now I have the security of knowing when I need help, it's in the next room. I have had to come to terms with the simple fact that I'm inoperable and incurable and that the only way I can beat cancer is to die from something else, but so far there is no expiration or best when used buy date stamped on my carton. It could come next time I ride my motorcycle or eat a steak. Or it might come sometime in the 2020's. I'll be 53 in May and still tell people that I'm going to live to be 120 and get shot to death by a jealous husband.

    With all of these uncertainties I have decided that for the first time in my life I have the means to be able to do what I want, when I want etc. Last fall, I bought an RV and next week I'm taking my first road trip, going back down to Flagstaff and then Prescott and Phoenix to visit friends, and more importantly, my daughter. In June, I'm going on a fishing retreat for men with cancer. And -- if gas prices don't get too out of hand and my doctor thinks it'll be safe to go a month w/o chemo -- I'll be going from there to visit friends back East and go see some of the historical sites back there. Finally, in August, I'm planning to get with some other people and go to the Sturgis Biker rally for the first time. My mother is convinced that I "came home to die." I've spent the past nine months convincing her that I left home to live.

    May 19 will be my two year anniversary of my dx and I think of it as my second birthday. That is when -- after 51 years -- I learned how to live. I'll be getting a special tattoo to commemorate the occasion on my anniversary this year.

    God Bless

    Doc Ray
  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    Buckwirth said:

    John
    There is no "diagnosed earlier" for stage IV. By its very definition stage IV was discovered late. The data I posted is limited to stage IV patients, so the increased lifespans are real.

    If you can't post legitimate info...

    Isn't that the truth. I wish
    Isn't that the truth. I wish they would have studies for stage IV survivors over 5 years and over 10 years. Phil Craig and I are all over 5 years and I have read about and met 10+ year survivors through the colon cancer alliance.
  • Buckwirth
    Buckwirth Member Posts: 1,258 Member
    Doc_Hawk said:

    Agree with Joe
    That was great post, Phil, very uplifting. And like Joe, I do not look at this as an affliction, a curse, a cross to bear or whatever. It has been a life changing event (and Dear Lord, I never appreciated what those words meant until this.) I have achieved a level of serenity which had always escaped me all of my life. Things that I used to get worked up and (no pun intended -- or maybe it is) put a knot in my colon just don't matter any more. And things where I had placed little importance are now key factors in my life.

    Sure, I'm tired and worn out all of the time; I refer to myself as a walking bio-hazard because the chemo has left the skin on the undersides of my hands and feet terribly cracked to the point where it's difficult doing simple things like typing, picking things up and sometimes walking is so agonizing that it brings tears to my eyes. But these just make me appreciate so much more the things that I was able to do in the past and make me look forward to the perfect body which I will have in the next life.

    I had to move from Flagstaff AZ to Utah into my parents house and I've had to give up the autonomy that I enjoyed while living alone, but now I have the security of knowing when I need help, it's in the next room. I have had to come to terms with the simple fact that I'm inoperable and incurable and that the only way I can beat cancer is to die from something else, but so far there is no expiration or best when used buy date stamped on my carton. It could come next time I ride my motorcycle or eat a steak. Or it might come sometime in the 2020's. I'll be 53 in May and still tell people that I'm going to live to be 120 and get shot to death by a jealous husband.

    With all of these uncertainties I have decided that for the first time in my life I have the means to be able to do what I want, when I want etc. Last fall, I bought an RV and next week I'm taking my first road trip, going back down to Flagstaff and then Prescott and Phoenix to visit friends, and more importantly, my daughter. In June, I'm going on a fishing retreat for men with cancer. And -- if gas prices don't get too out of hand and my doctor thinks it'll be safe to go a month w/o chemo -- I'll be going from there to visit friends back East and go see some of the historical sites back there. Finally, in August, I'm planning to get with some other people and go to the Sturgis Biker rally for the first time. My mother is convinced that I "came home to die." I've spent the past nine months convincing her that I left home to live.

    May 19 will be my two year anniversary of my dx and I think of it as my second birthday. That is when -- after 51 years -- I learned how to live. I'll be getting a special tattoo to commemorate the occasion on my anniversary this year.

    God Bless

    Doc Ray

    hey Doc,
    Welcome to the board. Do you happen to have any more info on that fishing retreat?

    Blake
  • Buckwirth
    Buckwirth Member Posts: 1,258 Member
    Doc_Hawk said:

    Liver Resection
    Hi Peter, do you know why some patients are eligible to liver resections and others not? I've been told that I'm not a candidate but was only told that it would not fix the problem. My sister even offered a transplant, but my Oncologist said that it wouldn't work for me.

    I've printed out the graph that was linked, but I was diagnosed in 2011, does anyone have any up dated stats?

    2009
    Is pretty current, and I think the authors did a good job of designing this one. Even if the same data were reviewed today it would only provide real numbers to 2006, and there have not been any major changes to the standard of care in the last five years
  • annalexandria
    annalexandria Member Posts: 2,571 Member
    tootsie1 said:

    Hope for the best
    John,

    I'm not going to add any "facts" or figures to this, because I'm not a medical professional. I just want to say that I will include you in my prayers and hope for the best for you.

    *hugs*
    Gail

    John's right about planning for the worst,
    but really, everyone should be doing that, even healthy people. I've known several young (ish) people who died suddenly (my favorite chemo nurse dropped dead of a heart attack at age 49, absolutely no sign she had any problems). Even before I got cancer, I had a fair number of critical documents in order, and now I'm working on some of the details for my memorial/burial plans, even though I hope to still live a long time! My mom made all of her wishes clear years ago, and she's still puttering along at 86, secure in the knowledge that when she does go, it's all sorted out for her kids. Advance planning is a good idea for all of us.
  • swimmer22
    swimmer22 Member Posts: 60

    John's right about planning for the worst,
    but really, everyone should be doing that, even healthy people. I've known several young (ish) people who died suddenly (my favorite chemo nurse dropped dead of a heart attack at age 49, absolutely no sign she had any problems). Even before I got cancer, I had a fair number of critical documents in order, and now I'm working on some of the details for my memorial/burial plans, even though I hope to still live a long time! My mom made all of her wishes clear years ago, and she's still puttering along at 86, secure in the knowledge that when she does go, it's all sorted out for her kids. Advance planning is a good idea for all of us.

    So far, I am one!
    I was diagnosed stage IV in December 2010 with a met to my lung. I had surgery to remove the met in January via VATS that obtained clear margins, followed by 6 treatments of Folflox.

    I had positive results with the chemo which also was decreasing the size or my rectal tumor. I then did 28 days of chemo/radiation and had a complete response at the time of my LAR. No lymph node involvement and no pathology of cancer in the resected scar tissue. I am now completing my 10 of 12 adjunctive chemotherapy treatments (Folfori). Had a PET scan last week and currently NED. Everything is very good news-- starting as a Stage IV, I am blessed to currently be in the situation I am. Remain positive, while I have a way to go to proclaim being cured, I couldn't ask for a better current situation. Take Care.
  • crazylady
    crazylady Member Posts: 543 Member
    survivor
    hi everyone,
    I am an 8 year stage iv survivor. I was diagnosed stage 2 in March 2004, stage iv oct. 2005. Until December 2011 I had only lung involvement. Unfortunately recent scans show adrenal gland and liver involvement, but I am still here. It has been difficult to be in almost constant treatment, but worth it.

    Jamie
  • Grace14
    Grace14 Member Posts: 65
    crazylady said:

    survivor
    hi everyone,
    I am an 8 year stage iv survivor. I was diagnosed stage 2 in March 2004, stage iv oct. 2005. Until December 2011 I had only lung involvement. Unfortunately recent scans show adrenal gland and liver involvement, but I am still here. It has been difficult to be in almost constant treatment, but worth it.

    Jamie

    This is very scary there
    This is very scary there seems to be alot of stage 2 people that are now stage 4. I had stage 2 in 2010 so far so good..but just wondering was it t3 or t4 and did anyone have chemo after surgery.
  • peterz54
    peterz54 Member Posts: 341
    Doc_Hawk said:

    Liver Resection
    Hi Peter, do you know why some patients are eligible to liver resections and others not? I've been told that I'm not a candidate but was only told that it would not fix the problem. My sister even offered a transplant, but my Oncologist said that it wouldn't work for me.

    I've printed out the graph that was linked, but I was diagnosed in 2011, does anyone have any up dated stats?

    Candidate for Liver Resection?
    Doc I am wrestling with that issue now for my wife who is halfway through chemo with hope that tumors will become resectable... I have found resources which elaborate but do not have at my fingertips. will try to locate and post. my recollection is that there are several parameters which are considered. size of tumors. involvement of arteries. whether cancer resides elsewhere (other than colon and liver), physical condition of patient, etc. but precise criteria is hard to pin down.

    will try to post later
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    Doc_Hawk said:

    Liver Resection
    Hi Peter, do you know why some patients are eligible to liver resections and others not? I've been told that I'm not a candidate but was only told that it would not fix the problem. My sister even offered a transplant, but my Oncologist said that it wouldn't work for me.

    I've printed out the graph that was linked, but I was diagnosed in 2011, does anyone have any up dated stats?

    Hi Doc
    A question. Where are you going for treatment?
    There was someone how posted how Thier Onc said they could not do anything to help his liver. Indirected them to my Onc, dr. Kemeny at Sloan Kettering in NYC who looked at his scans etc, and she believes that he can be helped by having a HAI pump therapy, something she's pioneered.
    Not for nothing, it might be worth a call. Many people are under her care and are around years later and cancer free.
    -phil
  • peterz54
    peterz54 Member Posts: 341
    Doc_Hawk said:

    Liver Resection
    Hi Peter, do you know why some patients are eligible to liver resections and others not? I've been told that I'm not a candidate but was only told that it would not fix the problem. My sister even offered a transplant, but my Oncologist said that it wouldn't work for me.

    I've printed out the graph that was linked, but I was diagnosed in 2011, does anyone have any up dated stats?

    duplicate

    duplicate
  • peterz54
    peterz54 Member Posts: 341
    Doc_Hawk said:

    Liver Resection
    Hi Peter, do you know why some patients are eligible to liver resections and others not? I've been told that I'm not a candidate but was only told that it would not fix the problem. My sister even offered a transplant, but my Oncologist said that it wouldn't work for me.

    I've printed out the graph that was linked, but I was diagnosed in 2011, does anyone have any up dated stats?

    Liver Resection II
    presentation by Dr Paty of MSKCC in 2009 discussing why most CRC patients should start with chemo and not surgery.

    2009 Dr Paty Presentation


    2011 slide presentation with some useful information relating to liver resection - surgical criteria, lessons learned, and survival statistics

    2011 Presentation
  • Buckwirth
    Buckwirth Member Posts: 1,258 Member
    Grace14 said:

    This is very scary there
    This is very scary there seems to be alot of stage 2 people that are now stage 4. I had stage 2 in 2010 so far so good..but just wondering was it t3 or t4 and did anyone have chemo after surgery.

    some percentage
    Is always going to have recurrence, and this forum is no different. Most who join here as stage 2 get through treatment, are disease free, and get on with their lives. Those who have a recurrence come back, and can over represent their group.
  • Actsassy
    Actsassy Member Posts: 37
    PhillieG said:

    March 2004
    I was diagnosed in Feb of 2004, one month later Avastin went on the market. They did the trials at Sloan Kettering. I had been inoperable due to a large tumor on my hepatic artery. I was able to do 5 months of Avastin out of the 6 months on FOLFOX. On September 21, 2004 I had my surgery for the liver resection, colon resection, HAI pump installation, gallbladder removal, and a few lymph nodes removed. Without the Avastin I most likely would not have been able to be operated on.

    My first opinion did not give me this plan, the second one did. It was good timing and I am fortunate to have a good oncologist. That can not be stressed enough. Get the opinion for the BEST oncologist you can find. They don't have to do everything, they can just offer a plan of action. If you have some hack/quack operate or advise you first, it's very hard to undo things for one, and/or possibly your window of opportunity will have passed and then it's playing catch-up. BTW: I had my 2nd opinion at Sloan. I paid for it myself. The best $350 I ever spent. I had a different doctor carry the plan of action out due to insurance issues. I was able to have the surgery at Sloan do to intervention that was done where I work on my behalf.

    The next drug that came out was Erbitux. That too has helped keep things in check.
    It's slowed or stopped the growth of my lung tumors. I've been on it about 6 years or so...

    New drugs are coming out. I had posted a few weeks ago how my niece is currently working on new cancer drugs that target certain attributes of cancer. Colon cancer in particular.
    Advances ARE being made contrary to opinions that you may read online.
    -p

    Hi Phil,
    I am stage iv colon

    Hi Phil,

    I am stage iv colon cancer patient with mets to liver. Was daignosed in May 2009. Was going to hospital here that is cancer only hospital,. suppose to be one of the best. Doc i saw was head of the department. Anyway they said could only control it with chenmo. No surgery. Well i was doing chemo and it had reduced my lesions and was down to where it was unseen. was off everything for a few months. then in Sept 2010 i started have the lesions growing again. went thru a lots of things along with that. husband had heart attacka nd by pass and other things, all at once. I was in a state of panic and anxiety. Well i got sick in may of 2011 with bacterial infection and my docs didn't do a whole lot or me nor felt that i was being heard. I was referred to another doc/facility. Went one las ttime to see the old doc and again i felt rediagnosed and was told that no surgerya and liver would look like swiss cheese. Long story short. new onco disagreed with just about everything the other doc said. New aggressive chemo and liver specialist. i saw liver specialsit and he said yes he said i could have surgery. long story short, i did agressive chemo and it shrunk a lot in a month. l had surgery on both my colon resection and lesions on liver zapped. as of right now i am ned. i just finished my heavy duty chemo and will be doing mainteance erbitux weekly tlll september.
    liver specialist says may need to have liver zapped here and there throughout. It is looked at as a chronic disease. so i will be 3 years in may. good luck to you.... and we keep moving forward.
  • Actsassy
    Actsassy Member Posts: 37
    PhillieG said:

    March 2004
    I was diagnosed in Feb of 2004, one month later Avastin went on the market. They did the trials at Sloan Kettering. I had been inoperable due to a large tumor on my hepatic artery. I was able to do 5 months of Avastin out of the 6 months on FOLFOX. On September 21, 2004 I had my surgery for the liver resection, colon resection, HAI pump installation, gallbladder removal, and a few lymph nodes removed. Without the Avastin I most likely would not have been able to be operated on.

    My first opinion did not give me this plan, the second one did. It was good timing and I am fortunate to have a good oncologist. That can not be stressed enough. Get the opinion for the BEST oncologist you can find. They don't have to do everything, they can just offer a plan of action. If you have some hack/quack operate or advise you first, it's very hard to undo things for one, and/or possibly your window of opportunity will have passed and then it's playing catch-up. BTW: I had my 2nd opinion at Sloan. I paid for it myself. The best $350 I ever spent. I had a different doctor carry the plan of action out due to insurance issues. I was able to have the surgery at Sloan do to intervention that was done where I work on my behalf.

    The next drug that came out was Erbitux. That too has helped keep things in check.
    It's slowed or stopped the growth of my lung tumors. I've been on it about 6 years or so...

    New drugs are coming out. I had posted a few weeks ago how my niece is currently working on new cancer drugs that target certain attributes of cancer. Colon cancer in particular.
    Advances ARE being made contrary to opinions that you may read online.
    -p

    Hi Phil,
    I am stage iv colon

    Hi Phil,

    I am stage iv colon cancer patient with mets to liver. Was daignosed in May 2009. Was going to hospital here that is cancer only hospital,. suppose to be one of the best. Doc i saw was head of the department. Anyway they said could only control it with chenmo. No surgery. Well i was doing chemo and it had reduced my lesions and was down to where it was unseen. was off everything for a few months. then in Sept 2010 i started have the lesions growing again. went thru a lots of things along with that. husband had heart attacka nd by pass and other things, all at once. I was in a state of panic and anxiety. Well i got sick in may of 2011 with bacterial infection and my docs didn't do a whole lot or me nor felt that i was being heard. I was referred to another doc/facility. Went one las ttime to see the old doc and again i felt rediagnosed and was told that no surgerya and liver would look like swiss cheese. Long story short. new onco disagreed with just about everything the other doc said. New aggressive chemo and liver specialist. i saw liver specialsit and he said yes he said i could have surgery. long story short, i did agressive chemo and it shrunk a lot in a month. l had surgery on both my colon resection and lesions on liver zapped. as of right now i am ned. i just finished my heavy duty chemo and will be doing mainteance erbitux weekly tlll september.
    liver specialist says may need to have liver zapped here and there throughout. It is looked at as a chronic disease. so i will be 3 years in may. good luck to you.... and we keep moving forward.
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    Actsassy said:

    Hi Phil,
    I am stage iv colon

    Hi Phil,

    I am stage iv colon cancer patient with mets to liver. Was daignosed in May 2009. Was going to hospital here that is cancer only hospital,. suppose to be one of the best. Doc i saw was head of the department. Anyway they said could only control it with chenmo. No surgery. Well i was doing chemo and it had reduced my lesions and was down to where it was unseen. was off everything for a few months. then in Sept 2010 i started have the lesions growing again. went thru a lots of things along with that. husband had heart attacka nd by pass and other things, all at once. I was in a state of panic and anxiety. Well i got sick in may of 2011 with bacterial infection and my docs didn't do a whole lot or me nor felt that i was being heard. I was referred to another doc/facility. Went one las ttime to see the old doc and again i felt rediagnosed and was told that no surgerya and liver would look like swiss cheese. Long story short. new onco disagreed with just about everything the other doc said. New aggressive chemo and liver specialist. i saw liver specialsit and he said yes he said i could have surgery. long story short, i did agressive chemo and it shrunk a lot in a month. l had surgery on both my colon resection and lesions on liver zapped. as of right now i am ned. i just finished my heavy duty chemo and will be doing mainteance erbitux weekly tlll september.
    liver specialist says may need to have liver zapped here and there throughout. It is looked at as a chronic disease. so i will be 3 years in may. good luck to you.... and we keep moving forward.

    Hi Sassy
    Wow! What a ride you had. I'm glad that things are going better now but it's (unfortunately) yet another example of WHY IT'S IMPORTANT TO GET A SECOND OPINION.
    Don't mean to shout but it can't be stressed enough...
    I hope you and your hubby are doing better.
    -p
  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member
    Buckwirth said:

    some percentage
    Is always going to have recurrence, and this forum is no different. Most who join here as stage 2 get through treatment, are disease free, and get on with their lives. Those who have a recurrence come back, and can over represent their group.

    I have a question, I don't
    I have a question, I don't quite understand. With Stage 1V they will do liver resection with "curative intent".....why is it if you have mets elsewhere they don't consider that as curative??
  • peterz54
    peterz54 Member Posts: 341
    chance for NED
    druidshadow, people do go NED. you may want to check into the work done by Yuman Fong at MSKCC on clinical scoring of mcrc patients as a tool to help predict suitability for resection (this has to do with liver mets). there is quite a bit published in terms of studies related to surgical intervention for mCRC patients.