For Stage III's: NED for how long now?

[Cathie]

I love this thread. I stopped reading posts at about page 9 or 10.

I got the Big C in Oct of 2002, in March of '03 the pathology report said I was NED and have been ever since......my dad and my oldest brother had the same cancer as me. Quote "very near the sphincter muscle" for all three of us. Dad lived for only 5 years and my brother lived only about 3 years.......

I am now at 12 years and have been NED since. I was 58 when I got it and I'm now 70......

Blessings

Cathie

[Don.in.Dallas]

A terrific thread. I peek in here often. One day I hope to post something of value but today can only say that I completed FOLFOX x 12 a couple of weeks ago. As far as NED, I can only claim 8 months since my resection. I'll be back with future posts, however!

[nkoske]

Well two years ago today my surgeon remove this from me:



Today I feel great and my plumbing works well.

[Jimswife]

Husbands latest results are in ..... All clear , 3 years and 3 months cancer free .... Over the moon is an understatement .

[RayGirl]

5 years ago today, I woke up from first colonoscopy and made a joke to my husband that "it feels like I just left you" in the waiting room. he respond, 'Nope you've been gone 20 minutes" that is the moment I knew something was terribly wrong, the tears on my doctors face confirmed it.
It's been an interesting five years. I feel blessed to be considered all clear and down to six month chest X-rays and bloodwork.

[Coppercent]

I was diagnosed July 2011. Was NED from Dec. 2011 through May 2013 when cancer revisited me. Had surgery at that time and have been NED since then. Just had a PET last week and so far all is good. My scans are always marked as stable since I have another condition that lights up just like my cancer. But we have been watching those spots since early 2012 and they have never grown on or off chemo so we are opting to call them as not being cancer.

[nicola smith]

Today I got my five year graduation certificate...no more tests or followups except for a sigmoidoscopy every two years. Doc said to exercise, eat healthily and see my GP if I had any unexplained pain or changes in bowel movements but recurrence after this long would be quite unusual. CEA today was 1.1. Huzzahs

I asked him - if I were to appear today with the same symptoms I had in November 2009 - whether the treatment would be the same (total colectomy, folfox, followups via CEA/CT etc.). His answer was that there would be no change...the exact same treatment path would be followed. Depressing, really, that , despite all the work going on, there seems to have been no advances that translate into better treatment options.

I also asked him about POG, which I know is for late stagers. He said our local hospital is developing some capacity but the problem with POG is that, after identifying the drivers for a tumour, you then need to find out how to turn them off...and that would take immense amounts of research...especially when done case-by-case. We talked about the BCCA case where a woman with stage 4 has apparently achieved remission by taking a blood pressure medication that was targetted at the protein driving her tumour. He said this was wonderful but also lucky. Yepper.

[sadysue]

I recently passed my 4 year dx anniversary. I saw my onc last week and he actually said the words, "you are cured." I am not sure if he is overly optimistic but....I'll take it. My next appointment with him is March 2016, no more scans and only doing bloodwork before the next appointment. No more testing is actually scaring the hell out of me. I will be getting a colonoscopy in May and then every two years after that. I kinda feel like a baby bird they are trying to push out of the nest! Not sure I am ready to fly on my own yet.

[TracieLynn]

Just dx as T3 N1 and very encouraged to see all these survivors/NEDs!!! Thank you all!

[sbrainbolt]

Just had scans on Friday. Told this am that I am still cancer free! Thankful and happy!

[NZJay]

Gosh, time for my update.

I had a clear CT scan in January, and clear laproscopic investigation in early March.

So this makes me either 15 or 16 months NED, I guess . CEA also trending down finally. Around 4.2 last check.

[sacm]

I have always felt squeamish about posting on this thread, like I am courting bad luck by saying "NED," but I do remember how much comfort I got here when I was first diagnosed. Guess it's time to pay it back. Diagnosed with IIIA, as of last week's scans, NED since treatment ended nearly 3 years ago.

[Ron50]

I am sixteen years past stage 3 c as of last January but I am finding that with each year I am being diagnosed with more problems. Since cancer I have been dxed with asthma, type two diabetes , psoriatic arthritis , severe perirheral neuropathy of feet legs and left hand( no platinum drugs.) ,severe sleep apnea in rem sleep ,an unknown auto immune disease causing protein loss in the nephrotic range (7 grams a day), now my gp has tested my testosterone levels. On the Australian scale normal is between 8 and 18 with the highest readings normally present in the morning. To be eligible for treatment a second test in the same range must occur. I did my second test early this week and the result was 5.3 my first was 7. I am scheduled for injections , one every three months. Low testosterone can cause heart arrythmyas. I had a holter monitor on last year and recorded over 10000 premature ventricular and atrial ectopic beats with several runs of tachycardia. Unfortunately replacement therapy can also cause heart attacks and strokes. It will be interesting to see how I tolerate it. Ron.

[Cj51]

Stage IIIB, diagnosed 5 years ago on April 15. Just had my last clear chest scan, one more pelvic scan in October and I'm being discharged to my primary for bloodwork from here on out.

Cj

[Lee]

Bumping this thread to the top for the new folks around hre.

Lee