Survivors living with cancer who are not NED

CherylHutch 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

geotina 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

here4lfe 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

taraHK 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