Surviving Stage 4

bruins1971
bruins1971 Member Posts: 227
edited March 2014 in Colorectal Cancer #1
I know some of you have been on this board for years. Does anyone know of anyone who has survived stage 4 for more than 5 years after DX? If not what is the longest and who on here has been living with cancer the longest?

Bobby in Dallas
«1

Comments

  • PhillieG
    PhillieG Member Posts: 4,866
    What's the Prize?
    Hi Bobby, I have been living with Stage IV colon cancer since Feb of 2004. I have been in treatment since diagnosis with a few breaks from chemo here and there. I have not been declared in remission, NED, or DEAD so I see that as a good sign that I can life a good life with cancer and remain working and generally in good health (except for the dang cancer).

    There are people on here who were diagnosed longer ago than I was that are no longer in treatment. I'm sure they will come forward and speak up. I hope you surpass my "record".
    -phil
    As RobInVancouver used to say "You haven't survived cancer until you die from something else"
    ;-)
  • AnneCan
    AnneCan Member Posts: 3,673
    Yes
    I have met one woman who volunteers at my cancer centre; she was diagnosed with stage 4 colon cancer~15 years ago. My cancer buddy through the Canadian Cancer Society is a survivor of ~ 22 years. I have not met her; I talk to her on the phone.
  • bruins1971
    bruins1971 Member Posts: 227
    PhillieG said:

    What's the Prize?
    Hi Bobby, I have been living with Stage IV colon cancer since Feb of 2004. I have been in treatment since diagnosis with a few breaks from chemo here and there. I have not been declared in remission, NED, or DEAD so I see that as a good sign that I can life a good life with cancer and remain working and generally in good health (except for the dang cancer).

    There are people on here who were diagnosed longer ago than I was that are no longer in treatment. I'm sure they will come forward and speak up. I hope you surpass my "record".
    -phil
    As RobInVancouver used to say "You haven't survived cancer until you die from something else"
    ;-)

    Phil
    Any day above ground is a good day... Lord keep me in my shoes rather than a pine box...

    Bobby
  • bruins1971
    bruins1971 Member Posts: 227
    AnneCan said:

    Yes
    I have met one woman who volunteers at my cancer centre; she was diagnosed with stage 4 colon cancer~15 years ago. My cancer buddy through the Canadian Cancer Society is a survivor of ~ 22 years. I have not met her; I talk to her on the phone.

    Amazing
    Those are the people we all strive to be like then ones who look cancer in the face and say you're not taking me anywhere buddy...
  • scouty
    scouty Member Posts: 1,965
    I totally disagree with Cheryl
    about stage IV colorectal cancer being incurable. I celebrated my 5th year of being NED (no evidence of disease) last year and was deemed cancer free from my oncologist and all the insurance actuaries. I have been "dismissed" by my oncologist and my docs are deciding on whether I get blood work and colonoscopies every 2 or 3 years. FWIW, I was diagnosed Jan. 2004' with my last chemo treatment later that year.

    There are others here that have gone years with no cancer in their bodies, Stacy is at either 8 or 9 years, Foxy was at 16 the last I heard from her, JAMS is at 4 and all were stage IV. I'm sure there are others but so many want to move on in their lives and sometimes people just need a break.

    Now I will admit there aren't as many as I'd like but there are some and stage IV colorectal cancer does not have a 100% mortality rate like Cheryl makes it sound.

    There are also some here that have been living with cancer and will be on chemo for life like Phil and Cheryl and they too seem to be doing well.

    Lisa P.
  • Betsydoglover
    Betsydoglover Member Posts: 1,248
    Surviving Stage IV
    I've been living with Stage IV since 5/05. Liver met at diagnosis. Had sigmoid colectomy in 6/05. Did 6 cycles of oxaliplatin/Xeloda/Avastin - liver met gone after 2! Had a tiny lung nodule show up in 11/08 - removed in 4/09 - did some Xeloda (6 cycles) plus Avastin ( I continue on Avastin only). Feeling good, scans NED, no side effects.

    Would be better if I could tell you I never had a recurrence, but still really well 5.5 years post diagnosis.
  • katienavs
    katienavs Member Posts: 88
    Hi Bobby,
    I was diagnosed

    Hi Bobby,
    I was diagnosed with stage 4 in June 2006. Four and a half years later I am NED but I have had to fight two recurrences. I am doing very well though.
  • Lori-S
    Lori-S Member Posts: 1,277
    Bobby
    Not from personal experience but I have been told that there are now many doctors who see stage IV colon cancer as a chronic disease and treat it as such as opposed to the nearly always terminal disease that it used to be though of. Even with the worse 5 year survival rates that are quoted, there are always going to be those that will survive and be NED. We all hope that we make that list for sure.
  • luvmum
    luvmum Member Posts: 457
    surviving stage 4
    Hi Bobby,

    I've read some research reports which showed that if liver surgery is possible after several chemo sections, the 5 year survival rate will increase a lot!

    I wonder any of you survive stage 4 without liver/lung surgery? My mum's oncologist said to me even before the chemo begins that my mum has very very very little chance to have liver surgery!!! =*(

    Dora

    p.s. There is a case here in Hong Kong. My friend's mum who had cancer remission 7 years ago, with tumor in her brain, liver, lung, she is still here and can help taking care of her grand-children.
  • CherylHutch
    CherylHutch Member Posts: 1,375
    scouty said:

    I totally disagree with Cheryl
    about stage IV colorectal cancer being incurable. I celebrated my 5th year of being NED (no evidence of disease) last year and was deemed cancer free from my oncologist and all the insurance actuaries. I have been "dismissed" by my oncologist and my docs are deciding on whether I get blood work and colonoscopies every 2 or 3 years. FWIW, I was diagnosed Jan. 2004' with my last chemo treatment later that year.

    There are others here that have gone years with no cancer in their bodies, Stacy is at either 8 or 9 years, Foxy was at 16 the last I heard from her, JAMS is at 4 and all were stage IV. I'm sure there are others but so many want to move on in their lives and sometimes people just need a break.

    Now I will admit there aren't as many as I'd like but there are some and stage IV colorectal cancer does not have a 100% mortality rate like Cheryl makes it sound.

    There are also some here that have been living with cancer and will be on chemo for life like Phil and Cheryl and they too seem to be doing well.

    Lisa P.

    Hey Lisa!
    I think you may have misunderstood my post in the other thread. What had me concerned was how it came across (and maybe it was me misunderstanding what Bobby had said) but that he had been diagnosed as Stage IV, that the original colon cancer had spread to his liver (hence the staging), that he did have the applicable surgeries and was on the protocol of chemo after the surgery, and is still on the chemo until next month, but here his oncologist is saying he's cancer-free and does not need CEA testing or scans. THAT concerned me that an oncologist would be so free with telling a patient that he is cancer-free when he hasn't even finished his treatment yet and he has had no follow up scans/CEA counts to back up this claim.

    Each stage is just a different level of where one's cancer is functioning.... and yes, it is quite possible that you will have two people as Stage III or two people as Stage IV, all will be given the same description of what their staging means, yet you could have one person do extremely well, and the other person's cancer be resistant to the treatments. So, in that sense, staging doesn't mean a damn thing.

    You are doing extremely well... better than extremely well. But even you have to admit, that out of all the Stage IVs out there, you are in that oh-so-small percentage who defy all odds and statistics and you can live to say, "See?? It DOES happen!" And yes, because it does happen, that gives everyone else who is any stage, reason to hope that they will have the exact same outcome.

    Part of the big support folk get from this board is that there are those who defy the "stereotypes", that they do not fall into the "statistics", that the medical community/specialists/oncologists will say "This is the pattern of how this particular cancer goes" and there will be those who say, "Oh ya? Well just watch me, I don't follow no pattern thank you very much!" and they don't. I'm in awe of when that happens... and I love hearing that more and more people, whether it's because there is so much more that can be offered than what was 15 years ago, or whether it's the luck of the draw and a certain percentage are always going to do well, no matter how bad their cancer was. I truly hope one day I can say I'm in that small percentage.... and even better, if we can prove that that small percentage is not so small anymore.

    BUT, one also has to look at the reality of this nasty disease... and it is very complex. The doctors/specialists don't have all the answers and a lot of time they are juggling and trying things just as we are ourselves. Sometimes, for some people they work and for others it doesn't do a damn bit of good. Who gets picked for which percentage you fall in? I don't think there's an answer to that. Someone, in the other topic explained about those whose cancer cells have mutated vs. those who stayed the same and were successfully treated by a particular chemo. That was super interesting and made so much sense... and explained to me why two people with the same cancer, same staging, same everything, can react in two totally different ways to the same chemo. One of them may go on for years, whereas the other one who did the exact same treatment protocol isn't as lucky.

    Until the medical field changes either the definitions of Staging, or changes their statistics for each stage... as they are now, Stage IV is still considered incurable. Now what is your definition of "incurable"? The most accepted definition would be that there is no cure. It can be treatable, but there is no cure... and the reason for that explanation is that once the cancer has spread to other organs, it becomes systemic. Now you have tiny cancer cells roaming all around your system. Some will die off because they can't support themselves... others will find a place to set up camp, take root and live happily destroying healthy cells around them as they support themselves and grow... until they become big enough that our technology can detect them. And away we go with treating these mets. They can be treated, but treatment does not mean a cure. We have no idea when the next cells will take root... and for those who are in the lucky percentage, maybe they won't take root, or if they do, through whatever reason (immune system? diet? exercise? combination of all of that?) they are naturally killed off before they become big enough for our technology finds them. So that brings up another definition of "incurable". Science/Medicine has not found a way to cure cancer once it has reached Stage 4. Medicine has come a long way as far as treating Stage IV cancer, but you will find researchers/oncologists/specialists/etc. will not come out and say that Stage IV cancer can be cured. YET, there are the Lisa's of the world where, for all intents and purposes, have been cured. IN-CURE-ABLE. Able to be cured from within. It's not necessarily medicine that has cured you, but call it the stars were all aligned, some magical universal force was at work with you, a belief system, whatever... you have been cured and it wasn't because of something modern medicine did for you.

    Can you explain why you are cured, and there are a fair amount of long term Stage IV's out there who are not in treatment so are technically cured... yet medicine can't explain it as they don't have a cure for advanced colon cancer. So, in the medical world, there is no cure for advanced (Stage IV) colon cancer (hence it is incurable)... yet there are many, many Stage IV folk, such as yourself who have been cured (hence IN-CURE-ABLE, able to be cured from within). Gee, if you folk KNEW exactly how you were cured from within... and could actually pinpoint what steps/what you did that actually created the cure, you could be one very rich lady. Was diet really the cure? How do we prove that? No matter what you say you think it was... how does one prove it? The only thing we do know is look at how well you are doing... and medical science can't explain why you are doing so well... but it's fantastic that you and the others are!

    I still think Bobby's oncologist was wrong in telling him he's cancer-free when he hasn't finished his first round of chemo... and to tell him he doesn't need a CEA reading because he is sure that there is no cancer there. That just doesn't make sense to me... but I'm willing to give the onc a little slack because I wasn't there in the room and didn't hear exactly what he said. We all know that what is said and what we hear can be two totally different things... and even knowing that, I still have to have my onc repeat everything to make sure it sinks in.

    Hahaha Lisa... look at that! You brought me out of the woodwork and I'm back in full babble mode ;)

    Cheryl
  • Buckwirth
    Buckwirth Member Posts: 1,258
    scouty said:

    I totally disagree with Cheryl
    about stage IV colorectal cancer being incurable. I celebrated my 5th year of being NED (no evidence of disease) last year and was deemed cancer free from my oncologist and all the insurance actuaries. I have been "dismissed" by my oncologist and my docs are deciding on whether I get blood work and colonoscopies every 2 or 3 years. FWIW, I was diagnosed Jan. 2004' with my last chemo treatment later that year.

    There are others here that have gone years with no cancer in their bodies, Stacy is at either 8 or 9 years, Foxy was at 16 the last I heard from her, JAMS is at 4 and all were stage IV. I'm sure there are others but so many want to move on in their lives and sometimes people just need a break.

    Now I will admit there aren't as many as I'd like but there are some and stage IV colorectal cancer does not have a 100% mortality rate like Cheryl makes it sound.

    There are also some here that have been living with cancer and will be on chemo for life like Phil and Cheryl and they too seem to be doing well.

    Lisa P.

    Cure pt2
    The word cure has several definitions, and you are using one while Cheryl is using another.

    Here are three definitions of the word:


    1. Restoration of health; recovery from disease.
    2. A method or course of medical treatment used to restore health.
    3. An agent, such as a drug, that restores health; a remedy.


    Cheryl is referring to definitions #2 and #3, while you are using definition #1. So, you may be cured, but there is still no known cure.

    This is why, for the purposes of this forum, I think #1 is inappropriate. There are good substitutes for the first definition: survivor, NED, recovered...

    Speaking of this as an incurable but manageable disease is the most accurate. Even if I survive this, I will never refer to myself as cured, as that is unfair to those who join me in this journey but never reach the finish.
  • Crow71
    Crow71 Member Posts: 679
    luvmum said:

    surviving stage 4
    Hi Bobby,

    I've read some research reports which showed that if liver surgery is possible after several chemo sections, the 5 year survival rate will increase a lot!

    I wonder any of you survive stage 4 without liver/lung surgery? My mum's oncologist said to me even before the chemo begins that my mum has very very very little chance to have liver surgery!!! =*(

    Dora

    p.s. There is a case here in Hong Kong. My friend's mum who had cancer remission 7 years ago, with tumor in her brain, liver, lung, she is still here and can help taking care of her grand-children.

    Surgery good
    Hey Dora,

    The old saying is totally true
    Med oncs want chemo
    Rad oncs want to burn
    Surg oncs want to cut
    I say, "Bless them all!!!"

    I was dx 7-09. Stage IV. Liver mets. Peritoneal mets. I was told by my med onc that surgery would not be an option. I had a great response to Folfox and after 12 treatments I had surgery. The surgery was not a "cure" and I'm still doing chemo, but I'm glad I did the surgery. Your onc wants you to think and feel in a realistic way. I think that's good. Hope comes from inside of us, not our doctors. Don't lose hope about having surgery. When it comes time to decide, you and your medical team will decide together. Be ready. In the meantime . .

    Stay strong and focussed,

    Roger
  • scouty
    scouty Member Posts: 1,965

    Hey Lisa!
    I think you may have misunderstood my post in the other thread. What had me concerned was how it came across (and maybe it was me misunderstanding what Bobby had said) but that he had been diagnosed as Stage IV, that the original colon cancer had spread to his liver (hence the staging), that he did have the applicable surgeries and was on the protocol of chemo after the surgery, and is still on the chemo until next month, but here his oncologist is saying he's cancer-free and does not need CEA testing or scans. THAT concerned me that an oncologist would be so free with telling a patient that he is cancer-free when he hasn't even finished his treatment yet and he has had no follow up scans/CEA counts to back up this claim.

    Each stage is just a different level of where one's cancer is functioning.... and yes, it is quite possible that you will have two people as Stage III or two people as Stage IV, all will be given the same description of what their staging means, yet you could have one person do extremely well, and the other person's cancer be resistant to the treatments. So, in that sense, staging doesn't mean a damn thing.

    You are doing extremely well... better than extremely well. But even you have to admit, that out of all the Stage IVs out there, you are in that oh-so-small percentage who defy all odds and statistics and you can live to say, "See?? It DOES happen!" And yes, because it does happen, that gives everyone else who is any stage, reason to hope that they will have the exact same outcome.

    Part of the big support folk get from this board is that there are those who defy the "stereotypes", that they do not fall into the "statistics", that the medical community/specialists/oncologists will say "This is the pattern of how this particular cancer goes" and there will be those who say, "Oh ya? Well just watch me, I don't follow no pattern thank you very much!" and they don't. I'm in awe of when that happens... and I love hearing that more and more people, whether it's because there is so much more that can be offered than what was 15 years ago, or whether it's the luck of the draw and a certain percentage are always going to do well, no matter how bad their cancer was. I truly hope one day I can say I'm in that small percentage.... and even better, if we can prove that that small percentage is not so small anymore.

    BUT, one also has to look at the reality of this nasty disease... and it is very complex. The doctors/specialists don't have all the answers and a lot of time they are juggling and trying things just as we are ourselves. Sometimes, for some people they work and for others it doesn't do a damn bit of good. Who gets picked for which percentage you fall in? I don't think there's an answer to that. Someone, in the other topic explained about those whose cancer cells have mutated vs. those who stayed the same and were successfully treated by a particular chemo. That was super interesting and made so much sense... and explained to me why two people with the same cancer, same staging, same everything, can react in two totally different ways to the same chemo. One of them may go on for years, whereas the other one who did the exact same treatment protocol isn't as lucky.

    Until the medical field changes either the definitions of Staging, or changes their statistics for each stage... as they are now, Stage IV is still considered incurable. Now what is your definition of "incurable"? The most accepted definition would be that there is no cure. It can be treatable, but there is no cure... and the reason for that explanation is that once the cancer has spread to other organs, it becomes systemic. Now you have tiny cancer cells roaming all around your system. Some will die off because they can't support themselves... others will find a place to set up camp, take root and live happily destroying healthy cells around them as they support themselves and grow... until they become big enough that our technology can detect them. And away we go with treating these mets. They can be treated, but treatment does not mean a cure. We have no idea when the next cells will take root... and for those who are in the lucky percentage, maybe they won't take root, or if they do, through whatever reason (immune system? diet? exercise? combination of all of that?) they are naturally killed off before they become big enough for our technology finds them. So that brings up another definition of "incurable". Science/Medicine has not found a way to cure cancer once it has reached Stage 4. Medicine has come a long way as far as treating Stage IV cancer, but you will find researchers/oncologists/specialists/etc. will not come out and say that Stage IV cancer can be cured. YET, there are the Lisa's of the world where, for all intents and purposes, have been cured. IN-CURE-ABLE. Able to be cured from within. It's not necessarily medicine that has cured you, but call it the stars were all aligned, some magical universal force was at work with you, a belief system, whatever... you have been cured and it wasn't because of something modern medicine did for you.

    Can you explain why you are cured, and there are a fair amount of long term Stage IV's out there who are not in treatment so are technically cured... yet medicine can't explain it as they don't have a cure for advanced colon cancer. So, in the medical world, there is no cure for advanced (Stage IV) colon cancer (hence it is incurable)... yet there are many, many Stage IV folk, such as yourself who have been cured (hence IN-CURE-ABLE, able to be cured from within). Gee, if you folk KNEW exactly how you were cured from within... and could actually pinpoint what steps/what you did that actually created the cure, you could be one very rich lady. Was diet really the cure? How do we prove that? No matter what you say you think it was... how does one prove it? The only thing we do know is look at how well you are doing... and medical science can't explain why you are doing so well... but it's fantastic that you and the others are!

    I still think Bobby's oncologist was wrong in telling him he's cancer-free when he hasn't finished his first round of chemo... and to tell him he doesn't need a CEA reading because he is sure that there is no cancer there. That just doesn't make sense to me... but I'm willing to give the onc a little slack because I wasn't there in the room and didn't hear exactly what he said. We all know that what is said and what we hear can be two totally different things... and even knowing that, I still have to have my onc repeat everything to make sure it sinks in.

    Hahaha Lisa... look at that! You brought me out of the woodwork and I'm back in full babble mode ;)

    Cheryl

    No problem Cheryl
    I understand where you are coming from and have no idea why I have been lucky while so many of my friends have not. I get frustrated that my docs (at one of the comprehensive cancer centers and a teaching hospital aren't more inquisitive). When my oncologist and I talk about it he usually shakes his head and says I have an "amazing immune system". You would think they might want to try to see what in my immmune system might be helping me so they could learn from it.

    Personally I will NEVER refer to myself as cured. No one knows what causes cancer or where it comes from so how the heck would they know it's cured!

    As far as Bobby and what his doctor is doing or better said, not doing for him I agree with you. His oncologist is not following the normal protocol or treatment recommendations for stage IV colorectal patients for some unknown reason and Bobby had no clue until he asked. That is one of the wonderful things about this board! FWIW, I'd still fire the guy if it was my doc AFTER I found another one.

    I took offense at your post because I thought it was too doom and gloomy for folks new to the fight. People come to this board for education, inspiration, hope, friendship, support, and laughs. If they wanted dismal stats, negative thoughts, and fearful predictions there are plenty of other places to find them. I have lots of thoughts about our cancer but some I would never post on this board, I just don't see anything gained from it.

    I have become a big believer in positive energy and avoiding negative energy when I can, which includes not talking to my own mother as often as I used to. I've worked in the technical world for 30 years and can research scientific facts and stats with the best of em but I also know there are things in this world and this life that can't be explained or measured and your post just felt too definitive to me. It would have scared the sh3t out of me 6 years ago when I was first diagnosed, I was alreadys scared enough already and that is why I singled it out.

    Lisa P.

    PS. How's the pup? I had to have my cancer fighting girl Scout (in my photo) put down in Oct. she was only 8. Skin cancer of all things, it went internal. Boxers are prone to it and ironically she had her first few cancerous skin tumors removed 2 months after I stopped chemo and was starting to get good news. One of my sisters thinks she took my cancer from me but who knows. After saying goodbye to her, I came home to find my 20 year old cat Ginger had curled up behind the sofa and died while I was gone. Tough day but you know 6 years earlier I was looking for homes for them since I never expected to outlive either of them. Heavy stuff!
  • scouty
    scouty Member Posts: 1,965
    Buckwirth said:

    Cure pt2
    The word cure has several definitions, and you are using one while Cheryl is using another.

    Here are three definitions of the word:


    1. Restoration of health; recovery from disease.
    2. A method or course of medical treatment used to restore health.
    3. An agent, such as a drug, that restores health; a remedy.


    Cheryl is referring to definitions #2 and #3, while you are using definition #1. So, you may be cured, but there is still no known cure.

    This is why, for the purposes of this forum, I think #1 is inappropriate. There are good substitutes for the first definition: survivor, NED, recovered...

    Speaking of this as an incurable but manageable disease is the most accurate. Even if I survive this, I will never refer to myself as cured, as that is unfair to those who join me in this journey but never reach the finish.

    Nice post Buckwirth
    I don't refer to myself as cured and never will as I say in my response to Cheryl above. My response was an attempt to offset the negative energy I got from hers.

    Lisa P.
  • HeartofSoul
    HeartofSoul Member Posts: 729
    Crow71 said:

    Surgery good
    Hey Dora,

    The old saying is totally true
    Med oncs want chemo
    Rad oncs want to burn
    Surg oncs want to cut
    I say, "Bless them all!!!"

    I was dx 7-09. Stage IV. Liver mets. Peritoneal mets. I was told by my med onc that surgery would not be an option. I had a great response to Folfox and after 12 treatments I had surgery. The surgery was not a "cure" and I'm still doing chemo, but I'm glad I did the surgery. Your onc wants you to think and feel in a realistic way. I think that's good. Hope comes from inside of us, not our doctors. Don't lose hope about having surgery. When it comes time to decide, you and your medical team will decide together. Be ready. In the meantime . .

    Stay strong and focussed,

    Roger

    From my knowledge, the
    From my knowledge, the following types of cancer have the best chance at remaining in remission for the longest amount of years (even classified as "cured".)

    http://info.cancerresearchuk.org/cancerstats/survival/latestrates/

    Top 10

    Testicular cancer including stage 3 (highest level for his type) and for any age
    Melanoma

    Papallary Thyroid cancer even in advanced stages
    (not sure why this cancer was not listed from list on webiste below as this cancer has a high cure rate with ten year survival rates for all patients at 80-90%

    Breast
    Uterus
    Hodgkins Lymphoma especially as a child or teen
    prostrate
    Cervix
    Larynx
    Bladder and Renal clear cell carcinoma (kidney)
  • scouty
    scouty Member Posts: 1,965
    luvmum said:

    surviving stage 4
    Hi Bobby,

    I've read some research reports which showed that if liver surgery is possible after several chemo sections, the 5 year survival rate will increase a lot!

    I wonder any of you survive stage 4 without liver/lung surgery? My mum's oncologist said to me even before the chemo begins that my mum has very very very little chance to have liver surgery!!! =*(

    Dora

    p.s. There is a case here in Hong Kong. My friend's mum who had cancer remission 7 years ago, with tumor in her brain, liver, lung, she is still here and can help taking care of her grand-children.

    I've never had lung or liver surgery
    My liver mets died after chemo and dietary changes (they were biopsied). My lung met was never biopsied but the scans said it responded nicely to the chemo at first and then slowly decipitated after I stopped chemo. My last chemo treatment was the end of Oct 2004'. I did have colon surgery in Jan. 2006 but the surgeons saw no reason to touch my liver.

    I have been very lucky and know it! Had a great 2 1/2 mile run 2 hours ago and am very thankful.

    Dora remember little chance does NOT mean no chance. It can happen and does. There's no reason to think you mum can't join us.
  • HeartofSoul
    HeartofSoul Member Posts: 729
    scouty said:

    I've never had lung or liver surgery
    My liver mets died after chemo and dietary changes (they were biopsied). My lung met was never biopsied but the scans said it responded nicely to the chemo at first and then slowly decipitated after I stopped chemo. My last chemo treatment was the end of Oct 2004'. I did have colon surgery in Jan. 2006 but the surgeons saw no reason to touch my liver.

    I have been very lucky and know it! Had a great 2 1/2 mile run 2 hours ago and am very thankful.

    Dora remember little chance does NOT mean no chance. It can happen and does. There's no reason to think you mum can't join us.

    just curious Scouty, do you
    just curious Scouty, do you think both the traditional treatment (chemo/rad/surgery) and the alternative options (nutrition...TCM...) were both responsible for your long term remission to now or only the alternative option would have been required?
  • John23
    John23 Member Posts: 2,122

    From my knowledge, the
    From my knowledge, the following types of cancer have the best chance at remaining in remission for the longest amount of years (even classified as "cured".)

    http://info.cancerresearchuk.org/cancerstats/survival/latestrates/

    Top 10

    Testicular cancer including stage 3 (highest level for his type) and for any age
    Melanoma

    Papallary Thyroid cancer even in advanced stages
    (not sure why this cancer was not listed from list on webiste below as this cancer has a high cure rate with ten year survival rates for all patients at 80-90%

    Breast
    Uterus
    Hodgkins Lymphoma especially as a child or teen
    prostrate
    Cervix
    Larynx
    Bladder and Renal clear cell carcinoma (kidney)

    With all respect,
    With all respect,


    The "survival rates" you noted regarding the web site:
    http://info.cancerresearchuk.org/cancerstats/survival/latestrates/

    Please note again, the words:
    "Relative five-year survival estimates based on survival probabilities
    observed during 2000-2001
    , by sex and site, England and Wales"


    There's a good explanation of "statistics" and how they may or may not
    apply, at the same web site:
    http://www.cancerhelp.org.uk/about-cancer/what-is-cancer/statistics/about-statistics

    It's a good read, along with the other information regarding research, etc.


    (Just my 1.5 cents)

    Best of health!

    John
  • CherylHutch
    CherylHutch Member Posts: 1,375
    scouty said:

    No problem Cheryl
    I understand where you are coming from and have no idea why I have been lucky while so many of my friends have not. I get frustrated that my docs (at one of the comprehensive cancer centers and a teaching hospital aren't more inquisitive). When my oncologist and I talk about it he usually shakes his head and says I have an "amazing immune system". You would think they might want to try to see what in my immmune system might be helping me so they could learn from it.

    Personally I will NEVER refer to myself as cured. No one knows what causes cancer or where it comes from so how the heck would they know it's cured!

    As far as Bobby and what his doctor is doing or better said, not doing for him I agree with you. His oncologist is not following the normal protocol or treatment recommendations for stage IV colorectal patients for some unknown reason and Bobby had no clue until he asked. That is one of the wonderful things about this board! FWIW, I'd still fire the guy if it was my doc AFTER I found another one.

    I took offense at your post because I thought it was too doom and gloomy for folks new to the fight. People come to this board for education, inspiration, hope, friendship, support, and laughs. If they wanted dismal stats, negative thoughts, and fearful predictions there are plenty of other places to find them. I have lots of thoughts about our cancer but some I would never post on this board, I just don't see anything gained from it.

    I have become a big believer in positive energy and avoiding negative energy when I can, which includes not talking to my own mother as often as I used to. I've worked in the technical world for 30 years and can research scientific facts and stats with the best of em but I also know there are things in this world and this life that can't be explained or measured and your post just felt too definitive to me. It would have scared the sh3t out of me 6 years ago when I was first diagnosed, I was alreadys scared enough already and that is why I singled it out.

    Lisa P.

    PS. How's the pup? I had to have my cancer fighting girl Scout (in my photo) put down in Oct. she was only 8. Skin cancer of all things, it went internal. Boxers are prone to it and ironically she had her first few cancerous skin tumors removed 2 months after I stopped chemo and was starting to get good news. One of my sisters thinks she took my cancer from me but who knows. After saying goodbye to her, I came home to find my 20 year old cat Ginger had curled up behind the sofa and died while I was gone. Tough day but you know 6 years earlier I was looking for homes for them since I never expected to outlive either of them. Heavy stuff!

    Interpretations
    Sorry the post came as such doom and gloom, Lisa. Hey, you've known me long enough (ok, in the virtual and email sense) to know that doom and gloom is not my thing. Like you, I AM and always have been a believer in positive energy, both in the giving of and being a receiver. My whole belief system revolves around what thoughts (energy) we put out there and what we receive back. Life (and death) is all about energy, so it may take a lot of work but surrounding oneself with positive energy really does have its rewards, whereas there's nothing to gain by negative energy (although once you allow negative energy around, it multiplies very fast and you can see some people are surrounded by so much negative energy in their lives, they don't even try to eliminate it. So if my post was interpreted as negative energy, doom and gloom, that was not the intent but to point out how the oncologist had so dropped the ball and the reasons why the oncologist should not have said what he did and because of those words, was not following standard protocol.

    OMG... I had no idea about Scout and Ginger :( Huggggggggs! I am so very sorry to hear this. I know people may think I'm crazy but our pets are such a physical and emotional support for us, especially those of us on our own... so losing one of them is like losing a part of yourself. There aren't words that I can say that take away that pain/loss, but know that I'm thinking of you big time!

    My little Bridget is doing fine. We had a scare about 2 months ago where she just started screaming in pain, hunched over and wouldn't walk. It was obvious it there was something wrong with her front right leg. When this first happened I panicked... I have never heard a dog scream in pain like that. So I grabbed my keys and purse, picked her up, grabbed my neighbour (who also is Bridget's walker) and we took her to the Emergency Animal Clinic. Xrays and blood tests, etc. later, they couldn't find anything that was causing the pain. They gave her a sedative so she was out like a light. The diagnosis was they think she had a sprained paw. Hahaha... $600 later, we took her home still not really knowing what was wrong with her. They put her on anti-inflammatories and gave me some syringes of pain med. Long and short of it... I was minus $600 and Bridget was fine within the week ;) But meanwhile, while they were examining her they noticed her left pupil didn't react to light stimulation. Sooooo... talked to my regular vet (who is also a good friend) and we decided Bridget needed to go to the Doggie Opthamologist, the fear being, something was going on in that eye and best we find out now rather than later. So, the report from the doggy opthamologist is that she is pretty sure Bridget has an inflammation of the iris. It's possible it could be a melanoma, but since her eye pressure is low, she thinks it is probably an inflammation... which means I give her eyedrops in the one eye twice/day.

    So yes, we've gone through a few things, but other than that, she is a spunky, mischievious mini-schnauzer who is very very healthy.... considering she did turn 13 years old last month :)

    Cheryl
  • scouty
    scouty Member Posts: 1,965

    just curious Scouty, do you
    just curious Scouty, do you think both the traditional treatment (chemo/rad/surgery) and the alternative options (nutrition...TCM...) were both responsible for your long term remission to now or only the alternative option would have been required?

    How could I not say both
    I can't ignore the facts.

    I was stage IV with no chance at surgery and had to start somewhere. I had no idea what an alternative was when I stared so did the only option I knew I had, chemo. I credit it for getting me started and the alternatives for polishing it off and keeping me there. My CEA was 5.1 when I stopped chemo and my CT report said I still had 4 active tumors (primary rectal one, 2 liver and 1 lung). My CEA has remained around 2 since mid 2005.

    I personally think you have to do both if you are stage IV and surgery isn't an option at least to some extent. I mostly focused on my blood work and tried to keep my WBCs and RBCs up and when I stopped chemo I maxed them as soon as I could and kept them there for the first year.

    I can't really explain why I felt I had to stop chemo other than I got to the point that I was more afraid of it than of my cancer. Today I am so glad I listened to my body and worked like heck to get it back to a semblance of health.

    Lisa P.

    PS. Chemo was the easiest (effort wise) and cheapest (for my pocketbook) of the 2.