So sad to hear....

We all fit in two catagories: NED or not. I'd like to live long enough to see science really get a genetic handle on most of these diseases that plague us. Forget Mars for a while and focus on that...................................Dave

beaumontdave said:

We all fit in two catagories:

We all fit in two catagories: NED or not. I'd like to live long enough to see science really get a genetic handle on most of these diseases that plague us. Forget Mars for a while and focus on that...................................Dave

Ok, I'm obviously clueless but was does NED stand for?

Same thing has happened to me.  In 2005 was diagnosed with anal cancer with 3 cancerous lumph nodes.  Initially had surgery to remove what was thought to be a polyp, turned out to be cancerous.  After my treatment, had regular checks (colonoscopies, ultrasounds, CT scans) - lived with side effects of maximum radiation treatments + 5Fu and mitomycin chemo, developed a small intestinal stricture that causes blockages (say caused from pelvic radiation). Was still able to ski, travel and really enjoy my life. My last colonoscopy was in 2014 - told by surgeon to have another one in 7-10 yrs. Then 2 yrs after colonscopy and 11 yrs after "NED" from anal cancer - June 2016 had an abd ultrasound - showed spots liver and from there, a liver biopsy, colonoscopy - CRC with multiple mets to liver - a new cancer. I can't understand how this all developed so fast.  It makes me very angry because my GP and my Oncologist say I did everything right, yet here I am with an incurable and inoperable metastatic cancer.  I Have read that polyps take about 10 yrs to become cancerous (had colonscopy 2 yrs ago and 4 yrs ago).  Wonder if the surgeon missed the area.  One never knows when cancer will return, and some of us are the unlucky ones to have that happen.

Bellen, it must be awful to deal with the recurrance, especailly at Stage 4.  It is very strange they didnt find anything at your colonoscopy.  I guess I dont believe it takes 10  years for the cancer to grow if so many have clean colonoscopies, then diagnosed with cancer in a year or two.  You were very fortunate to have 11 years being disease free and hope you get throught this and get at leat 11 (or 30) more disease free years.   

It seems that many people either get the same or similar cancer back, sometimes in a different location, or they get a "new" type of cancer. 

My sister in law was "cured" of thyroid cancer 20 years ago.  She was cancer free for 19 years, then had a lump in her shoulder area that turned out to be cancer.  It had spread signficantly by the time it was diagnosed and was a more aggressive type.  She died in January.  

Being diagnosed at Stage 4, is very frightening.  I often worry that I will never reach that NED. Every doctor I have seen told me that I am incurable, and that even if the tumors we can see are killed by chemo, or other methods, eventually it will come back.  I know that sounds depressing, but that is what I hear from all doctors, so it's as real as it gets.  

 I have had problems sleeping so have to take meds to help me sleep then am tired all day.  One doctor prescribed me some ritalin, but I really don't want to get into a cycle of pills to get to me to sleep and  pills to wake me up.    It gets hard to stay positive all the time, but I try to refocus on what's important and get back into living my life. Trying to get some of those "bucket list" items crossed off.   

 I am thankful for each day, even those days that I am too tired to do much of anything (like today).

But yeah, it tough to think about my new reality some times. 

Bellen said:

Joan - sleep aid

Hello Joan - I was prescribed temazepam for sleeping last July, when I was first diagnosed.  I am probably addicted to them now, but feel I need to take a sleeping aid to fall asleep, stay asleep and feel better the next day - calms my mind and thoughts also (about my cancer, etc). I suggested to my home nurse about not taking sleeping pills, but she said it may not be the time to do that if I ended up feeling tired and worried the next day.  So, I continue to take two sleeping pills at night.  Also, I basically take nothing for pain, except the days when I get spinal, bone pain from white blood cell shots.  So I look at it this way - they help me to get a decent night's sleep for the next day, and maybe by helping me with sleep and anxiety, I don't have to take so many meds for my cancer and the chemo side effects.

I got prescribed Alprazolam[Xanax] when I was diagnosed and it worked exactly as I needed it too. One pill[0.5mg]kept me calm and collected, 2 pills would put me sleepy, though I could fight it off if needed. There, for me, was nothing to abuse about it, and I had no desire to use it daily as its effects would be diminished by regular use. I've kept the prescription because it worked well in occasional stressful situations, doctor visits, funerals, and nights my mind couldn't let go, but it amounts to maybe a couple pills in a month now. I agree with others who recommend meditation, mindfulness, and other mental/emotional control techniques I've learned mindfulness and my own type of meditation, I practice some of the principles of the ancient philosophy of stoicism. But when the gut punch that is a cancer diagnosis hits you, making use of one of the benzodiazepines, may benefit many patients, and has served me well......................Dave