Survivors living with cancer who are not NED
Comments
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CherylCherylHutch said: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
Thanks for weighing in on this one, I was hoping you would because I know you have been dealing with this awhile. I think you made so many good points but the one that really stands out for me is the one about two parts dealing with cancer; it is so true you can almost miss it. I admire the way you live your life with cancer + I really appreciate your input.0 -
VickiVickilg 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.
I am sorry you found this post depressing; I found it the opposite. My belief is there is more than one way of "beating" it. Some poeple are never "cured" or it takes a long time for them to be "cured", so living with cancer is how they "beat" it. I truly hope that one day I will have "beaten" this by being cured. Right now I am trying to live as well as I can with cancer, + wanted to hear open discussion on how people are doing it. Sometimes NED seems like an exclusive club, + I am really happy for those who belong, but I want to know best methods of dealing with this beast even if I am never allowed into this club. I think the group of people not NED has a lot to offer in terms of survivorship, + I am really happy people are contributing to this thread. My journey with this is almost 2 years since diagnosis + some of these people have been dealing with it a lot longer. I am in awe.0 -
Hey VickiVickilg 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.
I'm so sorry to read that you found my post depressing and lacking in hope... when in fact, it is the exact opposite. As most people who have been around here can attest, my posts tend to be on the long, rambling side, because I really do try to get a lot explained in each post. Of course, there is no way one can put a full 4 years into one post... for a run down of what I've been through and how I don't let it interfere with my life, you can always read my ongoing journal/blog (Cheryl's Blog).
There are some of us who have not ever been NED. There is evidence of disease each scan we have. I was diagnosed over 4 years ago and I have never had even a month of NED... so should I be depressed? I feel fine, for the most part, until just this past treatment, I have tolerated my treatments well because my oncologist has been on top of managing my side affects. And because of that, I am living a very full life... and still do all the things I love doing. Now that I'm retired, I can spend all my days doing the things I love doing... should I be depressed about that?
I don't dwell on being NED... if I wasted my time and energy feeling sorry for myself because I hear others have been told they are NED and I'm not, then I'd be leading a miserable life which, chances are, I'd blame on the cancer. If my oncologist were to say, "I have no idea how this happened, but your tumours have disappeared. There is no evidence of disease on any of your scans and your CEA is back to normal", of course I would be happy... but I would not say I was cured. I couldn't say that until 2016 when I had clear scans for 5 years. And if, at anytime in the next 5 years spots were to show up on my lungs again, it would not come as a surprise, because I know NED does not = cured and it would mean it was time to go back on treatment.
There is a whole group of us here on this forum that do not belong to the NED club... and chances are, in the foreseeable future, we won't. Does that mean we can't talk about how we survive this disease? I would have thought for those who are new to being diagnosed, that you want to hear all the success stories. The stories of those who were Stage 1 or 2 and cured with a surgery, or possibly a surgery/chemo combo. Likewise, the success stories of those who were dx'd as Stage 3 and 4... of which there are lots of success stories. There are also success stories of those of us who are fighting the battle and continue to fight the battle for years after being diagnosed... and, as I understand the title of this topic, Anne started it because she wanted to know how others who are NOT NED, surviving the day to day life of living with cancer. I have re-read my post and I still don't see where I was being negative because I am very happy with my life, love my oncologist and although I had an incredibly rough time with this first round of Irinotecan, we are changing the schedule and hopefully today's chemo will be much easier on me. If not, we will readjust it again. I find that incredibly positive that I have an oncologist who will work with me on what I can and can't tolerate.
Again... I'm sorry if you find this depressing... but for those of us who have been living with/fighting the battle, Anne's topic of "Survivors living with cancer who are not NED" is a very real topic. Just how do us long term survivors cope when we are not NED and may never be NED? It's important for those of us who continue to fight the battle, and it's important to those who thought they were NED, were told they were NED and then find out that, in fact, they aren't. I hope with all my heart you find yourself NED or even better, cured. But if you find it's an ongoing battle, then I'm here to say that life goes on and it is as good as you want to make it, because not being NED is not the end of the world.
Cheryl0 -
Anne:
How do people survive with Stage IV, I dont' know, they just do. They have no other options. George was diagnosed with advanced Stage IV in March, 2009, has never been off chemo except for a short break of about a month or so or when we skipped a treatment to take a short vacation. Chances are he will never be off treatment except when all available treatments fail him and there is nothing more to be done. Thats just being honest.
Right now, he is doing ok, so we take that and run with it. When he is not doing so ok, well, we will deal with that bend in the road when we get to it.
I don't dwell on the cancer 24/7 like I used to, it served no purpose except to create depression and anxiety. It is what it is.
George has what the doc now refers to as a chronic disease that most likely one day will take him from me but...not today!
Hugs - Tina0 -
Thanks Anne, but this days I'm a little down, I hope will beAnneCan said: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.
better once in the fight !it always happens to me!
Un bisou!0 -
Pepepepebcn said:Thanks Anne, but this days I'm a little down, I hope will be
better once in the fight !it always happens to me!
Un bisou!
Sorry to hear you are down. You have lit up so many of my days with your attitude. I hope you feel better soon; you deserve it.0 -
Tinageotina said:Anne:
How do people survive with Stage IV, I dont' know, they just do. They have no other options. George was diagnosed with advanced Stage IV in March, 2009, has never been off chemo except for a short break of about a month or so or when we skipped a treatment to take a short vacation. Chances are he will never be off treatment except when all available treatments fail him and there is nothing more to be done. Thats just being honest.
Right now, he is doing ok, so we take that and run with it. When he is not doing so ok, well, we will deal with that bend in the road when we get to it.
I don't dwell on the cancer 24/7 like I used to, it served no purpose except to create depression and anxiety. It is what it is.
George has what the doc now refers to as a chronic disease that most likely one day will take him from me but...not today!
Hugs - Tina
I am glad to hear Geaorge is doing OK. You both are such inspiration to me. How did you make the move to not dwell on cancer so much? I think this is key in living with it, but I am having a hard time getting there. Thanks for responding to this thread.0 -
My wife said, "I havegeotina said:Anne:
How do people survive with Stage IV, I dont' know, they just do. They have no other options. George was diagnosed with advanced Stage IV in March, 2009, has never been off chemo except for a short break of about a month or so or when we skipped a treatment to take a short vacation. Chances are he will never be off treatment except when all available treatments fail him and there is nothing more to be done. Thats just being honest.
Right now, he is doing ok, so we take that and run with it. When he is not doing so ok, well, we will deal with that bend in the road when we get to it.
I don't dwell on the cancer 24/7 like I used to, it served no purpose except to create depression and anxiety. It is what it is.
George has what the doc now refers to as a chronic disease that most likely one day will take him from me but...not today!
Hugs - Tina
My wife said, "I have cancer, the doctor is dealing with it, so I'm not going to worry". I wish I could do that.
She has never heard the words NED. In fact, whenever she is off chemo, her tumors come right back. But they get treated, she gets up, and goes back to work. Strongest person I know.
Soon we are going on the vacation she has always wanted. No worries about finances, sickness, whatever. Just Go. No time like the present!
Best0 -
here4lifehere4lfe said:My wife said, "I have
My wife said, "I have cancer, the doctor is dealing with it, so I'm not going to worry". I wish I could do that.
She has never heard the words NED. In fact, whenever she is off chemo, her tumors come right back. But they get treated, she gets up, and goes back to work. Strongest person I know.
Soon we are going on the vacation she has always wanted. No worries about finances, sickness, whatever. Just Go. No time like the present!
Best
Wow, your wife has the right attitude; I want me some of that! She sounds amazing! I hope you have a wonderful vacation.0 -
In for the long haul
Hi. I was diagnosed over 8 years ago. I have had four recurrences. Currently on treatment for bone mets. Over the past 8 years, I have had some great stretches (1.5 or 2 years each time) when I was NED. I seem to have a somewhat unusual pattern where I get small recurrences about once every two years.... At this stage, I will probably be on some sort of chemo for life (hopefully with some chemo breaks) and it's unlikely I will ever be "cured". I am definitely one of those who is looking at cancer as a chronic health condition -- and I believe I can live like this for a long time.
I won't talk about specific diet things I do -- generally, I just try to eat healthily, most of the time. What has been the most helpful to me (in addition to wonderful support from family and loved ones) is attitude. I try to make the most of the time periods when I am NED -- and also of the days when I am feeling good (these days, it tends to be 10 out of every 14 days - not bad!). I accept invitations, make plans, and say 'yes' a lot. If i have to cancel things, or go home early, so be it. Although it sounds cliche, I count my blessings every day, and try to look on the bright side of each situation. Although this can be shocking (nauseating?!) on occasion -- to others -- it really helps me. In particular, I am grateful for the oncologist I have. I have a strong personality (!), and take a VERY active role in decisions about my medical care -- and I am so blessed to have an oncologist who not only accepts but embraces that.
Tara0 -
TarataraHK said:In for the long haul
Hi. I was diagnosed over 8 years ago. I have had four recurrences. Currently on treatment for bone mets. Over the past 8 years, I have had some great stretches (1.5 or 2 years each time) when I was NED. I seem to have a somewhat unusual pattern where I get small recurrences about once every two years.... At this stage, I will probably be on some sort of chemo for life (hopefully with some chemo breaks) and it's unlikely I will ever be "cured". I am definitely one of those who is looking at cancer as a chronic health condition -- and I believe I can live like this for a long time.
I won't talk about specific diet things I do -- generally, I just try to eat healthily, most of the time. What has been the most helpful to me (in addition to wonderful support from family and loved ones) is attitude. I try to make the most of the time periods when I am NED -- and also of the days when I am feeling good (these days, it tends to be 10 out of every 14 days - not bad!). I accept invitations, make plans, and say 'yes' a lot. If i have to cancel things, or go home early, so be it. Although it sounds cliche, I count my blessings every day, and try to look on the bright side of each situation. Although this can be shocking (nauseating?!) on occasion -- to others -- it really helps me. In particular, I am grateful for the oncologist I have. I have a strong personality (!), and take a VERY active role in decisions about my medical care -- and I am so blessed to have an oncologist who not only accepts but embraces that.
Tara
Thanks for commenting + sharing. I was hoping you would - I know you have been at this awhile + seem to do a lot of activities, which I think is fantastic,0 -
AnneCan...........AnneCan said:Tara
Thanks for commenting + sharing. I was hoping you would - I know you have been at this awhile + seem to do a lot of activities, which I think is fantastic,
Always remember and say this when it gets unnerving sometimes " Cancer is an unwanted visitor that I will not cater to in my home" and walk out from under the umbrella it seems to have over your head...It resides in a wonderful human being and it has no right, so show it no resolve or no mercy, in fact show it no feeling at all. Completely ignore it, do your thing, your way. For every minute you think about it is a minute lost for no good reason...So from now on when you start to think about your cancer, relate it to a bad cold and know that it will pass. Get in your mind that all of us will leave this earth someday, inevitably, we will.....whether it be natural, disease, car , truck, fall, phone bill, whatever, it does no good to allow material things to direct the way we live our lives...You are a beauty in this world...go out and share the beauty that's inside you as you do with us with someone that yearns for it. Then see how fast your life becomes GREAT again..You see, there is a method to this madness..Love to all of us....buzz0 -
Thanks,AnneCan said:here4life
Wow, your wife has the right attitude; I want me some of that! She sounds amazing! I hope you have a wonderful vacation.
We just got our
Thanks,
We just got our income tax refund, and we intend to bring none of it back except great memories.
Best0 -
You sound like my wife! I amCherylHutch said: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
You sound like my wife! I am in awe of her. The way she has handled the past 2 years of this walk is inspiring:
"When things go wrong as they sometimes will
When the road you're travelling seems all uphill
When the funds are low and the debts are high
And you want to smile but have to sigh,
When care is pressing you down a bit
Rest if you must, but Dont You Quit"
Author Unknown
Best0 -
Hi Gary - Chinese doctorGaryinUK said: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
Hi Gary,
I sent you a reply yesterday and I've just noticed it's not here... I wonder why! =(
Both the colon surgeon and the oncologist refer Chinese doctors to my mum. They both work in the Chinese medicine division at teaching hospitals (western medicine teaching hospital). We went to the first one and my mum did not have 'click' with the doctor, she had diarrhea after she drank the medicine (we know now it's because of oxaliplatin and 5-fu now). So we stopped going to this one. Then we got another referral and went to see another Chinese medicine from another university. This guy came from China and has been working in the Chinese medicine department at the university of more than 20 years. He knows all the chemo regimens very well and his research interest is also in oncology. He aims to help you to reduce the side effects during chemo treatments, he also helps patients to live their lives without chemo. My mum likes him very much and he will even give recommendations on what we should eat to help improving my mum's overall well-beings. My mum has been taking his medicine for more than 2 weeks now. I notice her side-effects on this round's chemo has reduced a lot and she regains her strength within 10 days. (compare to the first two chemo treatments that sent her to the hospital, I would consider this is very good).
Since she is going to have liver resection end of this month, the liver surgeon asked her to stop taking Chinese medicine as it might affect her liver function. We therefore stopped it a few days ago.
it is very important to find a Chinese doctor who is not after money and specialize in oncology. It's really much better if they know the chemo regimens well, so they know what they can eat, and what they cannot eat.
Sorry in the end my reply comes late and I hope you'll find this information useful.
Best regards,
Dora0 -
Hi Gary - Chinese doctor (one more point)GaryinUK said: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
Hi Gary,
My mum will stop taking Chinese medicine one day before chemo and will start drinking them one day after chemo. It's only our preferences. Some Chinese doctors will say they won't affect the chemo results, but I don't want Chinese medicine affect the chemo results. Some people will stop drinking Chinese medicine during their chemo period. Besides, you need to let your oncologist know that you are taking Chinese medicine because it will also affect CEA to some extend. Since all the doctors in my mum's medical team know she is taking Chinese medicine, so when they read her blood test results, they will take this into account.
My best wishes to you!
Dora0
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