Survivors living with cancer who are not NED

AnneCan
AnneCan Member Posts: 3,673
I know there are many on this board who are actively dealing with cancer but are not "NED". Some have been doing this for awhile + I would love to hear how you (long + short-term) are doing it. Many talk about this cancer as sometimes "chronic" + that may be how I survive this disease, which I am determined to do. Please share your secrets..I have been at this nearly 2 years (diagnosed the end of March 2009). I attribute my success so far mostly to an excellent medical team. I also credit this forum for keeping me as sane as I am. Friends + family play a huge role. I do try to eat fairly healthy (have degree in nutrition), juice when I can, make green tea lattes + thanks to Graci I have just tried my first buggalo meat. I have reduced, not eliminated red meats, + am more interested in how chickens are treated. I want to increase my exercise. I do take vitamin D daily. I need to talk about some other treatments to see if it's ok to take. We have a local market that sells local foods in the summer. People who are NED have a maintenace issue rather than hrlpint to treat.
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Comments

  • luvmum
    luvmum Member Posts: 457
    Anne I will always support you!
    Dear Anne,

    I know you might be feeling a bit down right now, waiting for the results to come out. My friend told me when her CEA was up a few years ago, she felt alright, did not experience any pain. Recently her CEA was lower than before, but she was not well. She learnt not to worry about the results, as long as you are still living and breathing the fresh air.

    You can also see my mum's situation. Her prognosis was really bad when she was diagnosed 27Oct2011, but she is doing well. We talked to the liver surgeon this afternoon, he was pretty confident that the liver surgery will go well because her liver function and blood results were all good. We follow some recommendations from Chinese doctor who was recommended by our colon surgeon and oncologist. If you would like to know what has she been taking, I can send you a PM.

    Anne, there are many friends and friends' family members fighting this for years and they all live well (with or with liver resection, with or without NED). As long as you believe you will recover, you will.

    Take good care and I will always pray for you.
    Dora
  • pepebcn
    pepebcn Member Posts: 6,331
    luvmum said:

    Anne I will always support you!
    Dear Anne,

    I know you might be feeling a bit down right now, waiting for the results to come out. My friend told me when her CEA was up a few years ago, she felt alright, did not experience any pain. Recently her CEA was lower than before, but she was not well. She learnt not to worry about the results, as long as you are still living and breathing the fresh air.

    You can also see my mum's situation. Her prognosis was really bad when she was diagnosed 27Oct2011, but she is doing well. We talked to the liver surgeon this afternoon, he was pretty confident that the liver surgery will go well because her liver function and blood results were all good. We follow some recommendations from Chinese doctor who was recommended by our colon surgeon and oncologist. If you would like to know what has she been taking, I can send you a PM.

    Anne, there are many friends and friends' family members fighting this for years and they all live well (with or with liver resection, with or without NED). As long as you believe you will recover, you will.

    Take good care and I will always pray for you.
    Dora

    Hi Anne , I Bern like you ...apron 2 years since dx.
    I Bern operated , but one year later recourrece! Then in October after 5 rounds of folfiri and avastin everything had gone , after 4 months wait and see some spots are showing in the scan in my lungs, despite not in the PET, but every body are afraid can be reoccurrence so I'm afraid I will be back to chemo in a short time!, Hope it works and we have another few months or years of tranquility!I'm in perfect shape ( when I got Hair,haha) so would never say I'm ill!.
    Hugs!
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    6 Years and 9 Months......
    Well, you have to count me, Annie:)

    I've got no secrets - I just use "blood and guts."

    I'll probably never walk a longer mile of track than these past years have given me.

    I just fight is my secret...

    -Craig
  • GaryinUK
    GaryinUK Member Posts: 62
    luvmum said:

    Anne I will always support you!
    Dear Anne,

    I know you might be feeling a bit down right now, waiting for the results to come out. My friend told me when her CEA was up a few years ago, she felt alright, did not experience any pain. Recently her CEA was lower than before, but she was not well. She learnt not to worry about the results, as long as you are still living and breathing the fresh air.

    You can also see my mum's situation. Her prognosis was really bad when she was diagnosed 27Oct2011, but she is doing well. We talked to the liver surgeon this afternoon, he was pretty confident that the liver surgery will go well because her liver function and blood results were all good. We follow some recommendations from Chinese doctor who was recommended by our colon surgeon and oncologist. If you would like to know what has she been taking, I can send you a PM.

    Anne, there are many friends and friends' family members fighting this for years and they all live well (with or with liver resection, with or without NED). As long as you believe you will recover, you will.

    Take good care and I will always pray for you.
    Dora

    Chinese referal
    Hi Dora

    What did you Colon surgeon reccomend in relation to the Chinese doctor? Are you taking any medicines from them?

    Regards

    Gary
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252
    Living with cancer
    I am one living with cancer. My oncologist told me chemo for life when I had my recurrance/continuation of progression of cancer. I didn't like that statement. But then I responded really well to FOLFIRI and Avastin, so I graduated to maintanence chemo after 8 tx instead of the planned 12. I hoped that after maintanence for a bit, I could even consider a break for the summer. I was planning on riding RAGRAI again (a week long bike ride across Iowa), and getting back to my lifelong healthier eating (which I have not been able to do on chemo). I was told that we didn't know how long of a break I would get from progression - 2 months, 2 years, or what. I'm a realist and didn't think I was cured.

    I had one cycle of 5-FU only several weeks ago (was supposed to get Avastin too, but the delivery didn't come in the winter storm), and I got an extra week off for vacation with family. Three weeks later, and my CEA is now up from 2 to 4.2. It stayed down at 2 for months on FOLFIRI, with a clear scan after 8 tx. So it looks like a repeat for me. My CEA went down to 2 and stayed there on FOLFOX and I had a clean scan and we thought I was cured. But at my very first labs we found out that was wrong. Cancer is such a rollercoaster ride. Up and down, over and over. I was celebrating being clear and graduating to maintenance chemo - making plans for the future based on being off the nastiest chemo cocktails. Only to find out a short few weeks later that my celebration was premature...

    So, for now, one day at a time again. I had Avastin again this cycle - hoping that is the drug making the difference, not the Irinotecan. Without the Irinotecan I still don't like chemo, but it is doable. I've still got teenagers - I have to stick around at least a few more years, so I will do what I have to do. One day at a time. Make informed choices, with the little information we do get. That is about all we can do.

    I'm a "baby" in this journey - only diagnosed 18 months ago. I know of many that have lived with cancer for lots of years. I plan to join them.
  • Buzzard
    Buzzard Member Posts: 3,043 Member

    Living with cancer
    I am one living with cancer. My oncologist told me chemo for life when I had my recurrance/continuation of progression of cancer. I didn't like that statement. But then I responded really well to FOLFIRI and Avastin, so I graduated to maintanence chemo after 8 tx instead of the planned 12. I hoped that after maintanence for a bit, I could even consider a break for the summer. I was planning on riding RAGRAI again (a week long bike ride across Iowa), and getting back to my lifelong healthier eating (which I have not been able to do on chemo). I was told that we didn't know how long of a break I would get from progression - 2 months, 2 years, or what. I'm a realist and didn't think I was cured.

    I had one cycle of 5-FU only several weeks ago (was supposed to get Avastin too, but the delivery didn't come in the winter storm), and I got an extra week off for vacation with family. Three weeks later, and my CEA is now up from 2 to 4.2. It stayed down at 2 for months on FOLFIRI, with a clear scan after 8 tx. So it looks like a repeat for me. My CEA went down to 2 and stayed there on FOLFOX and I had a clean scan and we thought I was cured. But at my very first labs we found out that was wrong. Cancer is such a rollercoaster ride. Up and down, over and over. I was celebrating being clear and graduating to maintenance chemo - making plans for the future based on being off the nastiest chemo cocktails. Only to find out a short few weeks later that my celebration was premature...

    So, for now, one day at a time again. I had Avastin again this cycle - hoping that is the drug making the difference, not the Irinotecan. Without the Irinotecan I still don't like chemo, but it is doable. I've still got teenagers - I have to stick around at least a few more years, so I will do what I have to do. One day at a time. Make informed choices, with the little information we do get. That is about all we can do.

    I'm a "baby" in this journey - only diagnosed 18 months ago. I know of many that have lived with cancer for lots of years. I plan to join them.

    Anne..........
    I went from Stage 2 to Stage 4 in the blink of an eye........Its a number only....as long as we don't go to stage 5 its just a number...We will always be forever looking over our shoulder but Im trying to see good things behind me as well as ahead instead of looking back thinking it might be the boogeyman....ya gotta remember, theres no such thing...so I look back and think about what a great day I just had, and plan for the next to be just as great...........love to ya, buzz
  • PhillieG
    PhillieG Member Posts: 4,866
    I want to know what "buggalo meat" is!
    I'm taking a guess that's it's Bison/Buffalo?
    I just passed the 7 year "living with cancer mark" last week. Believe it or not, my onc is still looking at this as being able to cure me. I'm not sure if she means like a Slim Jim or what! Thankfully, while I have been in continual treatment for this time with a break of a month or a few months here and there, the majority of my tumors have been staying small and mostly stable. I get to the point where they start to act up (CEA increases as does their size) and then I get an RFA.

    I also attribute my "success" to a great medical team over at Sloan Kettering and to Ben & Jerry and their miracle ice cream cancer cure. Well, I'm not sure if it will cure me but it hasn't killed me yet either. One has to indulge in some luxuries. I also credit family and friends not to mention that there is something in my genes (other than cancer) since my Mom defying the odds and doing well considering "old age" and things going here and there. I take things seriously in life but I also can find humor in everything, even in my cancer. I do try to eat well but I don't go overboard. Unfortunately, it costs a fortune to do that and I am not in a position to do that. Yea, I know...give up the B&J.
    You can pry it from my cold numb fingers
  • johnnybegood
    johnnybegood Member Posts: 1,117
    PhillieG said:

    I want to know what "buggalo meat" is!
    I'm taking a guess that's it's Bison/Buffalo?
    I just passed the 7 year "living with cancer mark" last week. Believe it or not, my onc is still looking at this as being able to cure me. I'm not sure if she means like a Slim Jim or what! Thankfully, while I have been in continual treatment for this time with a break of a month or a few months here and there, the majority of my tumors have been staying small and mostly stable. I get to the point where they start to act up (CEA increases as does their size) and then I get an RFA.

    I also attribute my "success" to a great medical team over at Sloan Kettering and to Ben & Jerry and their miracle ice cream cancer cure. Well, I'm not sure if it will cure me but it hasn't killed me yet either. One has to indulge in some luxuries. I also credit family and friends not to mention that there is something in my genes (other than cancer) since my Mom defying the odds and doing well considering "old age" and things going here and there. I take things seriously in life but I also can find humor in everything, even in my cancer. I do try to eat well but I don't go overboard. Unfortunately, it costs a fortune to do that and I am not in a position to do that. Yea, I know...give up the B&J.
    You can pry it from my cold numb fingers

    i guess
    i will reply underneath two of the best fighters i know on this board. i was NED for 2 years and just found out about a recurance in my liver and lung in jan.so i guess i fall into the surviving with cancer post.i will start my chemo next week so here we go again.but its people like buzzard and phillieg and so many others on here that give me the hope to keep fighting...Godbless...johnnybegood
  • maglets
    maglets Member Posts: 2,576

    i guess
    i will reply underneath two of the best fighters i know on this board. i was NED for 2 years and just found out about a recurance in my liver and lung in jan.so i guess i fall into the surviving with cancer post.i will start my chemo next week so here we go again.but its people like buzzard and phillieg and so many others on here that give me the hope to keep fighting...Godbless...johnnybegood

    Anne
    Annie I was diagnosed in 2005 so this is just past my sixth year and I feel as if I am a chronic case.
    If it is not surgery or chemo....then as kathleen said ////it is living in the constant parallel universe of cancer. I cannot tell on most days how often I think....oh Right! I have cancer.....lots of times and it invades my dreams too.

    I too try to eat a healthy diet, take Vit D and cod liver oil and a basic senior vitamin pill. I have red meat perhaps once or twice a month but I really am trying to exercise daily. I joined the local y....and go to gentle fit and stretch classes. I love my yoga class and try to spend some time each day with quiet positive imaging and breathing.....

    With very best love to you with a hug

    mags
  • AnneCan
    AnneCan Member Posts: 3,673
    luvmum said:

    Anne I will always support you!
    Dear Anne,

    I know you might be feeling a bit down right now, waiting for the results to come out. My friend told me when her CEA was up a few years ago, she felt alright, did not experience any pain. Recently her CEA was lower than before, but she was not well. She learnt not to worry about the results, as long as you are still living and breathing the fresh air.

    You can also see my mum's situation. Her prognosis was really bad when she was diagnosed 27Oct2011, but she is doing well. We talked to the liver surgeon this afternoon, he was pretty confident that the liver surgery will go well because her liver function and blood results were all good. We follow some recommendations from Chinese doctor who was recommended by our colon surgeon and oncologist. If you would like to know what has she been taking, I can send you a PM.

    Anne, there are many friends and friends' family members fighting this for years and they all live well (with or with liver resection, with or without NED). As long as you believe you will recover, you will.

    Take good care and I will always pray for you.
    Dora

    Thanks Dora!
    Yes, waiting for CT results is the pits when you know your CEA has been rising. I am glad to hear your Mom is doing well. You are a fantastic daughter. Don't forget to take care of yourself too!
  • AnneCan
    AnneCan Member Posts: 3,673
    Sundanceh said:

    6 Years and 9 Months......
    Well, you have to count me, Annie:)

    I've got no secrets - I just use "blood and guts."

    I'll probably never walk a longer mile of track than these past years have given me.

    I just fight is my secret...

    -Craig

    dear Craig
    Thanks for checking in. Fighting is a good tool; an important one in this challenge.
  • AnneCan
    AnneCan Member Posts: 3,673

    Living with cancer
    I am one living with cancer. My oncologist told me chemo for life when I had my recurrance/continuation of progression of cancer. I didn't like that statement. But then I responded really well to FOLFIRI and Avastin, so I graduated to maintanence chemo after 8 tx instead of the planned 12. I hoped that after maintanence for a bit, I could even consider a break for the summer. I was planning on riding RAGRAI again (a week long bike ride across Iowa), and getting back to my lifelong healthier eating (which I have not been able to do on chemo). I was told that we didn't know how long of a break I would get from progression - 2 months, 2 years, or what. I'm a realist and didn't think I was cured.

    I had one cycle of 5-FU only several weeks ago (was supposed to get Avastin too, but the delivery didn't come in the winter storm), and I got an extra week off for vacation with family. Three weeks later, and my CEA is now up from 2 to 4.2. It stayed down at 2 for months on FOLFIRI, with a clear scan after 8 tx. So it looks like a repeat for me. My CEA went down to 2 and stayed there on FOLFOX and I had a clean scan and we thought I was cured. But at my very first labs we found out that was wrong. Cancer is such a rollercoaster ride. Up and down, over and over. I was celebrating being clear and graduating to maintenance chemo - making plans for the future based on being off the nastiest chemo cocktails. Only to find out a short few weeks later that my celebration was premature...

    So, for now, one day at a time again. I had Avastin again this cycle - hoping that is the drug making the difference, not the Irinotecan. Without the Irinotecan I still don't like chemo, but it is doable. I've still got teenagers - I have to stick around at least a few more years, so I will do what I have to do. One day at a time. Make informed choices, with the little information we do get. That is about all we can do.

    I'm a "baby" in this journey - only diagnosed 18 months ago. I know of many that have lived with cancer for lots of years. I plan to join them.

    Kathryn
    You are right; rollercoaster is a good way to describr this journey. I have always liked your attitude; you have dealt with the ups + downs with grace + determination.
  • AnneCan
    AnneCan Member Posts: 3,673
    PhillieG said:

    I want to know what "buggalo meat" is!
    I'm taking a guess that's it's Bison/Buffalo?
    I just passed the 7 year "living with cancer mark" last week. Believe it or not, my onc is still looking at this as being able to cure me. I'm not sure if she means like a Slim Jim or what! Thankfully, while I have been in continual treatment for this time with a break of a month or a few months here and there, the majority of my tumors have been staying small and mostly stable. I get to the point where they start to act up (CEA increases as does their size) and then I get an RFA.

    I also attribute my "success" to a great medical team over at Sloan Kettering and to Ben & Jerry and their miracle ice cream cancer cure. Well, I'm not sure if it will cure me but it hasn't killed me yet either. One has to indulge in some luxuries. I also credit family and friends not to mention that there is something in my genes (other than cancer) since my Mom defying the odds and doing well considering "old age" and things going here and there. I take things seriously in life but I also can find humor in everything, even in my cancer. I do try to eat well but I don't go overboard. Unfortunately, it costs a fortune to do that and I am not in a position to do that. Yea, I know...give up the B&J.
    You can pry it from my cold numb fingers

    OK, Phil
    You caught me - you are right; it is "buffalo" meat! I need to read my posts more carefully; I saw another typo in there too - + it won't let me edit now!!! Buggalo meat does sound intriguing though....

    I like seeing the "c" word (cure)! You are a great example of someone "living with cancer" + it sounds like you lead a good life. If Ben + Jerry's is what it takes I will have to make the supreme sacrifice + have some! Thanks for your thoughts on this.
  • AnneCan
    AnneCan Member Posts: 3,673

    i guess
    i will reply underneath two of the best fighters i know on this board. i was NED for 2 years and just found out about a recurance in my liver and lung in jan.so i guess i fall into the surviving with cancer post.i will start my chemo next week so here we go again.but its people like buzzard and phillieg and so many others on here that give me the hope to keep fighting...Godbless...johnnybegood

    Johhnybegood
    Me too! They give me that hope too + as long as you have hope you have a chance. I know this is a tough time for you + I hope your chemo goes really well.
  • AnneCan
    AnneCan Member Posts: 3,673
    maglets said:

    Anne
    Annie I was diagnosed in 2005 so this is just past my sixth year and I feel as if I am a chronic case.
    If it is not surgery or chemo....then as kathleen said ////it is living in the constant parallel universe of cancer. I cannot tell on most days how often I think....oh Right! I have cancer.....lots of times and it invades my dreams too.

    I too try to eat a healthy diet, take Vit D and cod liver oil and a basic senior vitamin pill. I have red meat perhaps once or twice a month but I really am trying to exercise daily. I joined the local y....and go to gentle fit and stretch classes. I love my yoga class and try to spend some time each day with quiet positive imaging and breathing.....

    With very best love to you with a hug

    mags

    Thanks Mags!
    You are an inspiration to me! I think exercise is great for helping to deal with this; I need to do more of it! HUGS right back to you!
  • CherylHutch
    CherylHutch Member Posts: 1,375
    Hey my fellow Canuckian!
    You can count me in the "Living with cancer" group :) I have never been NED and unless they find a way of taking my two lungs out and I'm able to breathe fine without them, then I'd say I will never see that term NED as a description of me :) But, if truth be known... NED really is not the be all and end all of anything because as we all know, NED = No Evidence of Disease. No evidence as far as our technology can find. Hey, I'm the first to say I'm in awe of how fantastic our medical technology is and the things it can do... it's quite mind boggling. But when someone gets the NED diagnosis, all that means is that as far as our imagining machines can tell, nothing shows up on the images. The cancer cells are too small to show up on any images and if ones' CEA is a good indicator for them (it isn't for everyone but for some of us, it is very good) and the CEA is low, then yipppeee... ones' cancer is too small to be detected and the CEA shows there is nothing acting up anywhere in the body (that can be detected). Someone who has NED status then gets a break from all treatments... yipppeee! But, I find NED to be a little deceiving as well. Yes, there are some people who have been declared NED and they remain NED for years and years and years! We all strive for that, but alas... not everyone gets to attain that level. Many many people get diagnosed as NED and it can be a matter of months, a matter of half a year, or even a year, and then they get the news on a regular scan or blood work that something has been detected. I don't know how often we have seen that here on this forum and when it happens, the person is devastated. They don't understand why they had to get a reoccurrence when they were doing so well. But the reality is... even though they were declared NED, they still had cancer cells, they just weren't big enough to be seen on any image... eventually they grow and eventually technology will find them. So that is why I don't like the term NED... we should have a different term... something like "BREAK TIME", meaning the cancer is so small, you get a break from any kind of treatment until further notice ;)

    I was diagnosed in December 2006. Sooooo, I passed the 4 year mark this past December. When first diagnosed, I did the surgery, the chemo (8 months of FOLFOX) and 6 weeks of daily radiation. That all ended at the end of Oct 2007. Now, I was NOT NED at that time, because I had multiple nodules in both lungs... but they were considered "indolent" (aka very lazy). So, this was like being NED in that these nodules were not doing anything.. they weren't growing (not even slowly), yet they weren't disappearing either... I was in limbo. But I may as well have been NED because it meant I got to have a break from treatment since all the nodules (except for one) were very small and not growing. For that one that was larger than the others, we did an RFA procedure and had it zapped... which ended it's life :) My period of no treatment lasted from Nov 2007 until June 2010. Not bad, huh? That was like 2 1/2 years of no chemo, no nothin'... other than the every 3 month scans and blood work. We ALMOST got to where we only needed scans/blood work every 6 months... but alas, the little critters decided to wake up and start growing in the spring 2010. So, back on chemo I went... this time, Xeloda. Well, we all know how that went for me. Major problems with heel pain... but the first 3 months was brilliant. All those once lazy nodules that started to grow, well they all shrunk by 33%. Yayayaya!! So, I suffered the heel pain and continued on with the Xeloda. In Dec 2010, we found that the Xeloda had stopped working (booooo hissssss). My oncologist said that we would take a short 6 week break and then change chemos... to Irinotecan. And that's where we are now. I had the port installed in January... and my first Irinotecan treatment was Feb 7. Ha! Again, we all know how that went... baaaaaad! I have never been so sick in all my life! I was on a schedule of every 3 weeks. But my first treatment I was deathly ill for 2 out of the 3 weeks. There is no way I can do the standard 8 treatments and be sick 2 out of 3 weeks... so, today I was in to see my oncologist to decide how we are going to handle this. I will stop here because I will be starting a topic to discuss it, etc.

    But in answer to your question about how does one live/survive having a chronic disease or chronic cancer... that's exactly what I do. I treat this as "This is my life" and I'm not willing to be a statistic, nor will I accept that just because I have cancer it's a given that I must suffer. Wrong. It seems that the majority of "suffering" when one has cancer comes from the side affects from the medications we have to take to keep our disease either under control or medications to kill off the disease. Well, there are two parts to living with cancer... making sure you are getting treatments that are actually effective for what you are going through and then making sure you have treatments or medications to make sure you are not suffering unnecessarily from side affects. Lucky for me, I have an oncologist who believes this as well. She says it is NOT acceptable that I am sick for 2 out of 3 weeks. She says there may be side affects, but we must make sure that we treat the side affects as well as the cancer and if we have to juggle the schedule, juggle the dosages of medicines and find medicines that combat the side affects, then that is what we must do because the end result should be that we are working on keeping the disease under control while still living the life we are used to having.

    If you had (and many people do) diabetes... would you see this as an end to your life? No, of course not! You would be tested, you would be given medication and if that medication did not agree with you, then it would be adjusted so that you can continue living your life. You may have to make some lifestyle changes... and I think any illness may require that... but no chronic illness should make your life miserable.

    Does that make sense?

    Cheryl
  • Vickilg
    Vickilg Member Posts: 281

    Hey my fellow Canuckian!
    You can count me in the "Living with cancer" group :) I have never been NED and unless they find a way of taking my two lungs out and I'm able to breathe fine without them, then I'd say I will never see that term NED as a description of me :) But, if truth be known... NED really is not the be all and end all of anything because as we all know, NED = No Evidence of Disease. No evidence as far as our technology can find. Hey, I'm the first to say I'm in awe of how fantastic our medical technology is and the things it can do... it's quite mind boggling. But when someone gets the NED diagnosis, all that means is that as far as our imagining machines can tell, nothing shows up on the images. The cancer cells are too small to show up on any images and if ones' CEA is a good indicator for them (it isn't for everyone but for some of us, it is very good) and the CEA is low, then yipppeee... ones' cancer is too small to be detected and the CEA shows there is nothing acting up anywhere in the body (that can be detected). Someone who has NED status then gets a break from all treatments... yipppeee! But, I find NED to be a little deceiving as well. Yes, there are some people who have been declared NED and they remain NED for years and years and years! We all strive for that, but alas... not everyone gets to attain that level. Many many people get diagnosed as NED and it can be a matter of months, a matter of half a year, or even a year, and then they get the news on a regular scan or blood work that something has been detected. I don't know how often we have seen that here on this forum and when it happens, the person is devastated. They don't understand why they had to get a reoccurrence when they were doing so well. But the reality is... even though they were declared NED, they still had cancer cells, they just weren't big enough to be seen on any image... eventually they grow and eventually technology will find them. So that is why I don't like the term NED... we should have a different term... something like "BREAK TIME", meaning the cancer is so small, you get a break from any kind of treatment until further notice ;)

    I was diagnosed in December 2006. Sooooo, I passed the 4 year mark this past December. When first diagnosed, I did the surgery, the chemo (8 months of FOLFOX) and 6 weeks of daily radiation. That all ended at the end of Oct 2007. Now, I was NOT NED at that time, because I had multiple nodules in both lungs... but they were considered "indolent" (aka very lazy). So, this was like being NED in that these nodules were not doing anything.. they weren't growing (not even slowly), yet they weren't disappearing either... I was in limbo. But I may as well have been NED because it meant I got to have a break from treatment since all the nodules (except for one) were very small and not growing. For that one that was larger than the others, we did an RFA procedure and had it zapped... which ended it's life :) My period of no treatment lasted from Nov 2007 until June 2010. Not bad, huh? That was like 2 1/2 years of no chemo, no nothin'... other than the every 3 month scans and blood work. We ALMOST got to where we only needed scans/blood work every 6 months... but alas, the little critters decided to wake up and start growing in the spring 2010. So, back on chemo I went... this time, Xeloda. Well, we all know how that went for me. Major problems with heel pain... but the first 3 months was brilliant. All those once lazy nodules that started to grow, well they all shrunk by 33%. Yayayaya!! So, I suffered the heel pain and continued on with the Xeloda. In Dec 2010, we found that the Xeloda had stopped working (booooo hissssss). My oncologist said that we would take a short 6 week break and then change chemos... to Irinotecan. And that's where we are now. I had the port installed in January... and my first Irinotecan treatment was Feb 7. Ha! Again, we all know how that went... baaaaaad! I have never been so sick in all my life! I was on a schedule of every 3 weeks. But my first treatment I was deathly ill for 2 out of the 3 weeks. There is no way I can do the standard 8 treatments and be sick 2 out of 3 weeks... so, today I was in to see my oncologist to decide how we are going to handle this. I will stop here because I will be starting a topic to discuss it, etc.

    But in answer to your question about how does one live/survive having a chronic disease or chronic cancer... that's exactly what I do. I treat this as "This is my life" and I'm not willing to be a statistic, nor will I accept that just because I have cancer it's a given that I must suffer. Wrong. It seems that the majority of "suffering" when one has cancer comes from the side affects from the medications we have to take to keep our disease either under control or medications to kill off the disease. Well, there are two parts to living with cancer... making sure you are getting treatments that are actually effective for what you are going through and then making sure you have treatments or medications to make sure you are not suffering unnecessarily from side affects. Lucky for me, I have an oncologist who believes this as well. She says it is NOT acceptable that I am sick for 2 out of 3 weeks. She says there may be side affects, but we must make sure that we treat the side affects as well as the cancer and if we have to juggle the schedule, juggle the dosages of medicines and find medicines that combat the side affects, then that is what we must do because the end result should be that we are working on keeping the disease under control while still living the life we are used to having.

    If you had (and many people do) diabetes... would you see this as an end to your life? No, of course not! You would be tested, you would be given medication and if that medication did not agree with you, then it would be adjusted so that you can continue living your life. You may have to make some lifestyle changes... and I think any illness may require that... but no chronic illness should make your life miserable.

    Does that make sense?

    Cheryl

    Cherylhutch
    I realize you are going through a lot and have your right to express your opinion but so do I. Your post was truly the most depressing and lack of hope post I have read on this site. I wish I had not read it. Although I am not naive to the way cancer behaves I believe in hope. I believe that one's attitude about beating cancer is half the battle. To live without the mind set that I will beat this would be settling. I do not settle. I fight.
  • johnnybegood
    johnnybegood Member Posts: 1,117
    Vickilg said:

    Cherylhutch
    I realize you are going through a lot and have your right to express your opinion but so do I. Your post was truly the most depressing and lack of hope post I have read on this site. I wish I had not read it. Although I am not naive to the way cancer behaves I believe in hope. I believe that one's attitude about beating cancer is half the battle. To live without the mind set that I will beat this would be settling. I do not settle. I fight.

    the truth hurts
    we all want to believe we can be NED and stay NED but cherylhutch you said it very well.you see i am one of those statistics who thought the word NED meant i was cured.no doc ever told me after 2 years and 4 months of being first dx that there is a chance this could come back.I THOUGHT I WAS CURED!!!!!! My radiologist even told me 4 months ago(i was still seeing him to help me with radiation damage and meds for neuropathy)that since i was past the 2 year mark that i had a great chance that this would not even come back.so there are people out there who get NED and stay NED but i truly believe you have to make it past the 5 year mark and even then i have read some posts about people who come back to this site who had cancer several years ago and then had a recurrance.cheryl you are one of those survivors on here who i look up to.you were on here when i was first dx and i wish i had your smiley attitude.as you remeber the oxy was very hard on me and i am fixing to hit it again.i believe (this is my opinion)that this board is here so we can help one another get thru this cancer life the best we can.we dont need to sugar coat it.cancer is what it is and we have to accept it and fight this together...Godbless...johnnybegood
  • maglets
    maglets Member Posts: 2,576

    the truth hurts
    we all want to believe we can be NED and stay NED but cherylhutch you said it very well.you see i am one of those statistics who thought the word NED meant i was cured.no doc ever told me after 2 years and 4 months of being first dx that there is a chance this could come back.I THOUGHT I WAS CURED!!!!!! My radiologist even told me 4 months ago(i was still seeing him to help me with radiation damage and meds for neuropathy)that since i was past the 2 year mark that i had a great chance that this would not even come back.so there are people out there who get NED and stay NED but i truly believe you have to make it past the 5 year mark and even then i have read some posts about people who come back to this site who had cancer several years ago and then had a recurrance.cheryl you are one of those survivors on here who i look up to.you were on here when i was first dx and i wish i had your smiley attitude.as you remeber the oxy was very hard on me and i am fixing to hit it again.i believe (this is my opinion)that this board is here so we can help one another get thru this cancer life the best we can.we dont need to sugar coat it.cancer is what it is and we have to accept it and fight this together...Godbless...johnnybegood

    Cheryl H
    Vicki I am so sorry that you find cheryl's post to be negative. I do not find it that way at all. At all cost I would like to avoid conflict on this forum.
    Cheryl just tells her story in usual wonderful rambly way....in fact as a fellow Canadaian I can see that she is actually making light of things and even laughing at herself.

    It is a long long hard path....I did not discuss the endless pain and illness that I have endured but it's there...we all do....

    please be assured Cheryl is fighting ......we are all fighting....oxy is tough tough ....cancer is a tough old fight....

    please let's stick together....

    hugs for all

    maggie
  • AnneCan
    AnneCan Member Posts: 3,673
    pepebcn said:

    Hi Anne , I Bern like you ...apron 2 years since dx.
    I Bern operated , but one year later recourrece! Then in October after 5 rounds of folfiri and avastin everything had gone , after 4 months wait and see some spots are showing in the scan in my lungs, despite not in the PET, but every body are afraid can be reoccurrence so I'm afraid I will be back to chemo in a short time!, Hope it works and we have another few months or years of tranquility!I'm in perfect shape ( when I got Hair,haha) so would never say I'm ill!.
    Hugs!

    Pepe
    It's obvious that one of the tools you use to deal with the beast is your optimism + sense of humour! I wish you good results regarding your lungs.