Is NED really NED

thingy45 said:

My take on this discussion

Hello All,

I am not always posting but more a lurker. My take on NEd is that at this moment..... they cannot detect any evidence of cancer in "me" I am NED.That said...... for 6 years I complained, saw 2 different specialist and 6 doctors, all claimed it was IBS, Lactose intollerant, by the near end of things Crohns was mentioned, until the total blockage and 10 lbs of cancer was removed high up on the left side. They all missed it, claiming I was NED then, because it was in a different place then normal. Tests had shown there was blood at the time in excrement, but many excuses giving by them.

I am lucky to be here and declaired NED for NOW. Yes, for now, because we all carry cancer cells in our body. We never know when they will strike and where. Lately I hear of many younger people with cancer in bone and blood, the cancer of Kahlen I had never heard of etc etc. Are we really ever totally NED?

Same with heart decease, many saw doctor and was given clean bill of health, 3 days later, BANG, heart attack, go figure!

We all have choices in life which path to walk, in career, marriage and also in health. Some choose the conventinal way some choose the "natural" path. Who is to say that one path is better then the other? Dr's will state the conventional way others say the old chinese way. It is our personal choice,.

I have followed Pete from the start, so interesting and helpfull his posts and blogs. New ideas etc etc,sometimes he received flag from  us sometimes coodo's but all in all he is a forrunner in my book. Trying to stay alive and healthy as long as possible.

My next Ct scan is next month. Am I nervous? You bet. You never know when you are at the end of the line. CEA has been good marker still in the 1.1 range was 18 when diagnosed as stage III. So I am hopefull and feel very blessed.

Keep up by keeping us posted Pete, you have my full support, prayers and love for you and your family,

Hugs, Marjan

goodluck with your up coming tests.

today i tried a second dose removab, in the second course. no response i susepct again. these therapies challenging in many ways.

no response is challenging.

i got an cea back today around 7.4. again a different german lab, the different clinics use different labs. i test get my **** tested. i am getting a sense about all the different labs here and there.

i skyped my family today, i hope they come here soon, i miss them so much.

i still have active disease, i am blessed to be here fighting.

hugs,

pete

ps this strategy may seem to out there but here goes.

"i joyfully accept the no response, the therapy failure"

this way no result of a therapy or a test will cause upset. this attitude protects my soul from the harm of failure. it works for me. but its extreme, i means fully accepting my approaching mortality, then however many more days is a wonderful, joyous bonus. the point for me is that its free of expectation. its just my way of coping with all the loss around me.

annalexandria said:

And my take on NED...

is simply that it is better to be it than not.  It may mean the cancer is gone, it may mean that it is simply not visible or detectable by our available technology, but either way, it means we are being given more time, and that i will happily take!  AA

PS  I asked my oncologosit a couple of years ago about the ctc test, and he said he didn't use it because he felt it wasn't useful.  According to him, even if it should show zero, there could still be cancer cells circulating in the blood.  Don't know if that's true or not, having not done any further research on it.  I suppose if the test did pick up cancer cells, then you would have a confirmation that the cancer is still active, and then you move into the realm of whether or not to continue whatever treatment you happen to be on, so in that regard it could prove useful.  It seems to me that a strong immune system might also be able to address a few circulating cells, but that's not based on any research, just a guess.

like at my ctc test, its alot more comprehensive then a number. have a read of the rgcc tests in my medical records on my blog, you will be amazed, i think

i like your idea about the immune system eating a few circulating stem cells, i wonder about whats required for the immune system to take out stems cells in the blood which is one case and then the immune system taking out micro mets when a stem cell takes root. really interesting ann, always helpful.

one day we will probably know the answer, if we find the answer, may may live long enough to share it.

hugs,

pete