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

Posted: Wed Apr 17, 2019 11:09 am
by WriterGirl1969
Celebrating my 3-year scan results coming back CLEAN yesterday, so I am now officially 3 years NED. As ibcaree so eloquently said, God gets all the credit. I have been blessed with a wonderful support system (including all of you), an excellent surgeon, and the faith that sustains me daily. The book I wrote about my personal journey, along with the stories some of you allowed me to include, never ceases to amaze me in the way it provides encouragement to others.

I will continue to pray for a cure so we can stop losing precious loved ones to this wretched disease.

Tracy

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

Posted: Mon Jun 24, 2019 6:53 pm
by wwroam
12 years NED from Colon Cancer today.
Unfortunately my NSCLC is looking very shaky. I have a guided biopsy of lung nodules this week. If that proves to be cancerous it will be immunotherapy for me. Most likely Opdivo.

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

Posted: Tue Jun 25, 2019 4:03 pm
by Ron50
Best of luck with the lungs mate, Hoping it is all scar tissue. Ron.

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

Posted: Tue Jun 25, 2019 11:30 pm
by CRguy
wwroam wrote:12 years NED from Colon Cancer today.
Unfortunately my NSCLC is looking very shaky. I have a guided biopsy of lung nodules this week. If that proves to be cancerous it will be immunotherapy for me. Most likely Opdivo.

Sending all the best wishes your way
Keep us in the loop my friend

Cheers and MEGA POSI++++++++ Vibes
CRguy

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

Posted: Wed Jun 26, 2019 4:29 am
by PainInTheAss
My birthday was yesterday. Six years ago I met with my oncologist for the first time on my birthday. I’ve been NED for 5 years, and it will be six in October.

I stopped posting, too, but it’s not from survivors guilt. It’s just that life gets busier and busier and busier the more you get back into it. You never completely forget about cancer or your treatment. You have daily or even hourly reminders. I was rubbing lotion on my neuropathy numbed feet and I thought about the colon club today. Colon Club was my lifeline. I really thought I was going to die. I was a IIIc two ways since I had 5 lymph nodes light up and I was also a T4b. There was one lymph node that lit up that was near my spine that could not be removed by surgery. It took two years to get insurance to approve a PET scan to check and see if the chemo and radiation wiped it out. Now I’m going to bed, exhausted from so many activities and knowing tomorrow is busy with even more. I’m strong, full of energy now and feel more like my old self than I have in six years. I walk fast and find it easier to get up out of chairs. The effects of chemo and radiation on the joints really do slowly get better year and year. I feel better this year than I did last year, even. I’ve always so gotten back to being able to function on 7 hours sleep instead of 10. I’ve got my ostomy down now where I can even go without ostomy supplies. My only real problem is gas, so I carry body spray with me everywhere. I remember being terrified hearing I would likely have an colostomy. Now that’s just my life.

But... I always feel like I’m living on borrowed time. I want to do so much while I have the chance. I beat cancer (so far), but there are also heart attacks, strokes, getting hit by a bus, choking on a chicken bone. My only wish is not to die from something really stupid. I went through so much to stay alive, I don’t want to waste it.

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

Posted: Fri Jun 28, 2019 8:35 pm
by Basil
Had my two year scans this week - all clear.

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

Posted: Tue Jul 16, 2019 3:50 pm
by teddydove
Hi everyone. I do not believe I have posted before, but I lurked here a lot starting five years ago when my wife was diagnosed IIIc with 8 out of 20 nodes and T3. Her cancer was discovered when she had routine colonoscopy at age 50. She only managed six rounds of oxaliplatin because she reacted very badly to it (seizures and a night or two in ICU), but she had the rest of folfox for 12 sessions.

I read this thread this morning to prepare mentally for her five-year followup CT and CEA tests. My wife never believed she had cancer and she was not at all worried. I did the worrying for both of us. The news could not have been better. All clear and she is released from the oncologist. Just regular colonoscopies at five year intervals.

I remember googling death rates for IIIc and being shocked at how bleak her odds looked (from American Cancer site...they have since updated the numbers). Here we are more than five years later and she is doing great. She has a little residual neuropathy that is annoying to her, but not nearly as serious as you hear about.

I loved this thread and hoped that one day I could post good news. Today is that day.

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

Posted: Wed Jul 17, 2019 5:43 am
by Ron50
Congratulations to both of you. May you both lead a long and happy life. Ron.

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

Posted: Tue Sep 10, 2019 10:44 pm
by thubler
Bump

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

Posted: Wed Sep 11, 2019 12:04 am
by horizon
Only had a blood test this year but CEA was good. That makes it 8 years.

Basil wrote:Had my two year scans this week - all clear.


Late congratulations my dude!

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

Posted: Thu Oct 10, 2019 7:47 pm
by disco nap
Hello!
I'm now 9 years NED. I haven't been on the forum for ages but suddenly felt like checking in. I am glad to see so many familiar "faces" still here and still doing well.

I started a volunteer gig with the Canadian Cancer Society as a peer coach for people who are recently diagnosed with cancer. Right now, I'm partnered up with a young lady in almost exactly the same circumstances as I was 9 years ago, and I'm happy to be able to provide some sort of hope that it's possible to make it through chemo and live a pretty great life afterwards.

Love to you all!

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

Posted: Fri Oct 11, 2019 8:21 am
by horizon
disco nap wrote:Hello!
I'm now 9 years NED. I haven't been on the forum for ages but suddenly felt like checking in. I am glad to see so many familiar "faces" still here and still doing well.


Def remember you. Glad you're doing so well!

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

Posted: Fri Oct 11, 2019 5:30 pm
by disco nap
horizon wrote:
disco nap wrote:Hello!
I'm now 9 years NED. I haven't been on the forum for ages but suddenly felt like checking in. I am glad to see so many familiar "faces" still here and still doing well.


Def remember you. Glad you're doing so well!



I remember you too, Horizon, and I was glad to see you are also doing well! We should make a pact to celebrate the 10 year mark :)

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

Posted: Fri Oct 11, 2019 7:45 pm
by margiej
I have had a rocky week... Had my CT scan last Thursday at an outside radiology clinic and met with my oncologist on Tuesday. He told me my CT looked good but later called and said he was looking at a scan in the system from TWO years ago. He was an oncologist from Mayo filling in at my clinic and I know he felt bad. There is always a problem getting the outside CT connected up with my clinic. After daily contact with the radiology clinic and my own clinic, I finally got the report.. NED. So I am a stage IIIb almost 4 years out. Celebrating with some wine and chili tonight. Hugs to all. Keep hanging in.
Love,
Margie

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

Posted: Fri Oct 11, 2019 8:07 pm
by NHMike
margiej wrote:I have had a rocky week... Had my CT scan last Thursday at an outside radiology clinic and met with my oncologist on Tuesday. He told me my CT looked good but later called and said he was looking at a scan in the system from TWO years ago. He was an oncologist from Mayo filling in at my clinic and I know he felt bad. There is always a problem getting the outside CT connected up with my clinic. After daily contact with the radiology clinic and my own clinic, I finally got the report.. NED. So I am a stage IIIb almost 4 years out. Celebrating with some wine and chili tonight. Hugs to all. Keep hanging in.
Love,
Margie


Glad you're doing well. I'm another 3B.

Electronic Medical Records are great for hospitals and clinics to share information but it doesn't work for imaging. I get CDs from one hospital and drive it to the other hospital. Hopefully it's fixed someday.