Page 2 of 3

Re: Any Stage IV long term survivors here?

Posted: Wed Apr 27, 2016 6:51 pm
by Mattie
6 years for me. Still doing okay.

Re: Any Stage IV long term survivors here?

Posted: Wed Apr 27, 2016 8:13 pm
by NedPlease
Still doing well and readying for my scan on May 20 that will mark six years since dx. Crossing fingers and saying prayers that my good health continues.

Wishing all of us the best.

Hang on to your hope,
N

Re: Any Stage IV long term survivors here?

Posted: Wed Apr 27, 2016 10:30 pm
by mariane
Ronswife,

Kanj wrote you about Dr Kemeny. If you want any info please let me know.

Re: Any Stage IV long term survivors here?

Posted: Thu Apr 28, 2016 10:48 am
by wolverine
Thank you everyone for sharing your experiences and stories!!! It is so helpful to know there are so many of you out there.
Do you attribute your successes to anything in particular - medical treatment, obviously, but did you do anything in addition to the standards? Supplements, immune support, alternative therapies, prayer? I don't want to sound like I'm soliciting for medical advice, I'm just curious about your experiences.


Thank you!!

Re: Any Stage IV long term survivors here?

Posted: Thu Apr 28, 2016 8:04 pm
by EverySunriseCounts
One of my clients--a lean, healthy, and outdoorsy guy--informed me last summer that he was diagnosed with Stage IV.

In 1992.

Since it's 2016 now, that makes it... 24 years?

He's been fine ever since, has some neuropathy in his feet.

Re: Any Stage IV long term survivors here?

Posted: Fri Apr 29, 2016 1:52 am
by Felicitym23
I am not long term as such YET....... But I plan on being it.

I am stage 4. Told I had a couple of year most likely. At Christmas just gone.

I am only 46... January this year I started on an Auto Immune Therapy with my Folfox 6 treatment.

Come March and all my scans showed no cancer. I am now in remission and plan on staying that way.

I hope that gives you hope. Stage 4 these days is more like a chronic condition rather than a life sentence.

Re: Any Stage IV long term survivors here?

Posted: Fri Apr 29, 2016 9:06 am
by OrchardWriting
Also, poet Donald Hall, former poet laureate of the US, was diagnosed with stage iv in about 1995 and is still kicking around his farm.

Re: Any Stage IV long term survivors here?

Posted: Sat Apr 30, 2016 6:05 pm
by booklady
Hello...I was diagnosed in 1995 with Duke's C colo-rectal cancer (with cancer through the wall of the colon and found in 1 of 14 lymph nodes removed). I had colon resection followed by 6 weeks of radiation therapy and 1 year of chemotherapy (5FU and Levamisol). I have been cancer free for 20 years. So please be encouraged....the statistics for survival at 5 years were less than 25%...My doctor gave me the best advice I have heard: "Remember, you are a person, and not a statistic!"

I can't say that I haven't had some rough times, but I'm alive and and have 6 great-grandchildren, and that is a great big bonus! I will be 76 years old this August, and I don't get around as well as I used to, but I would not trade those 20 years for anything.

I am always happy to be able to give people a bit of encouraging news when things are so scary and overwhelming. Stay strong! :)

Booklady

Re: Any Stage IV long term survivors here?

Posted: Sun May 01, 2016 11:04 am
by stu
Seven years this summer for my mum. Been bumps along the way but lives a great life in between.

Stu

Re: Any Stage IV long term survivors here?

Posted: Wed May 04, 2016 10:35 am
by folbright
ronswife wrote:Hello All,
And if ALL of this wasn't BAD enough, his last CT scan showed blood clots in one of his lungs. The onc put him on Lovenox for an indefinite period of time. This is a real hardship for us financially, as it costs $330 per month for the daily injections!


After my PICC line was removed, a few weeks after surgery, I developed a huge blood clot in my arm and had to go on Lovenox which was brutal - I really hated getting two injections in the stomach every day and almost passed out a few times in the first week. I was prescribed the Lovenox in ER (I went because my arm suddenly got numb in the shower) and saw a blood clot specialist a few weeks later who wanted me to continue on it for an additional month to make sure. It cost us $330 a month as well (and that was our co-payment - insurance covered 80% of the actual cost but we were still left with $330!) and I protested and he agreed to let me switch to 20 mg of Xaralto tablets a day which was much more affordable and he said almost as good as Lovenox. The clot had completely cleared up by the next time I saw him a few weeks later and he cut my dosage to 10 mg a day as a prophylactic since I was starting chemo and was going to have a PICC line put back in (later replaced by a port) and haven't had a problem.

If you have or are getting a PICC line or port I highly recommend asking for a prescription for a low dosage of a blood thinner tablet like Xarelto as a precaution. It's a lot cheaper (and less painful) than having to get Lovenox later on and avoiding a blood clot prevents a lot of needless fear and anxiety.

Re: Any Stage IV long term survivors here?

Posted: Tue Oct 17, 2017 11:03 am
by plastikos
Just thought I’d bump this thread up. Maybe some of us need to hear stories from time to time. I know I do.

As for me, I am approaching my 3 year mark from diagnosis in late 2014. I have had some wonderful periods of being NED and hopefully will enter another one soon. Hopefully for good. A lot has changed after having 2 recurrences. I am more pragmatic now. Not pessimistic, but just realizing and accepting that I am in this for the long haul. I used to think, maybe rather naively, that if I just finished the chemo I would be cured forever. I know it happens to a lucky few but in reality most aren’t so lucky. But my sheer will to survive has not changed. I’ll do anything. And I think that’s the only way to approach this enemy if one wants to survive.

Re: Any Stage IV long term survivors here?

Posted: Tue Oct 17, 2017 11:24 am
by stu
Well I am delighted to report it's now eight years and a nice clear scan too!!! Yippee .
The pursuit of the cure settled for us too and more a management and wellness focus took its place . It had been easier to handle this way. But good scanning is a life saver .
Wishing good treatment outcomes for you all .
Stu

Re: Any Stage IV long term survivors here?

Posted: Tue Oct 17, 2017 11:56 am
by stevieb
Still here and doing great. NED again and have a scan at MDA coming up in early November. It will be 5 years since diagnosis in December!!!

Re: Any Stage IV long term survivors here?

Posted: Tue Oct 17, 2017 8:47 pm
by mariane
Last Sunday in NY I met a 13 years colon cancer survivor. The patient went through 82 chemo treatments, had recurrences but has been NED for 10 years and counting :):):)

MY CEA normalized 2 years ago in October 2015 and I am NED since May 2016. It has not been long but I am happy I am still here.

Re: Any Stage IV long term survivors here?

Posted: Wed Oct 18, 2017 5:00 am
by Mercy110
My mum is currently undergoing Folfox with Avastin. She has multiple lung nodules according to the CT scan. Her response to the chemo is quite good as her CEA lowered. I just want to know if there are any cases for patie.ra with multiple lung nodules and still a la to undergo surgery and NED.
If so, what is the surgery you have taken? Thanks a lot.