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

Posted: Sat Oct 12, 2019 6:40 pm
by Lee
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


I can only imagine what your week was like. So very HAPPY to hear you are NED. May you ALWAYS reside in NEDville. Enjoy that wine.

Lee

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

Posted: Tue Oct 15, 2019 1:21 am
by stpio
Good morning to all! I wanted to encourage any newly diagnosed to remain positive and sending prayers! I am 12 year, stage 3 colon cancer survivor and 9 year, stage 1 breast cancer survivor. Hugs and best wishes to all for sharing your inspiring stories! hugs

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

Posted: Tue Oct 15, 2019 12:23 pm
by Cured
So glad you keep this optimistic thread going.

I was cured for 10 years before my Rectal cancer was found to have metastasized. I am still optimistic and feel well. I turn 67 next month, and hope to see my grandchildren grow up. The chemo was tolerable. Tumors in my lungs are reduced. I have been done with chemo for over 6 months and the will do a CT of my lungs in December.
We only discovered the return of the cancer when I was walking funny. My wife drove me to the ER thinking I had a stroke. After the CT they said “no stroke, you just have a tumor on your brain- we want to remove it- SIGN HERE”. If left in place it would crowd my brain &.... Fortunately it was not “urgent/emergent” so we had time to find the best Neurological group and change hospitals. Brain surgery was easy. I was up walking shortly after surgery, then home 2 days later. It they felt that the tumors were from my lung and had pumped up to my head. The radiologist who viewed the CT said it could be a new primary cancer of the lung. Then began the task of identifying the type of cancer in my brain and lungs. You all know that treatment is different for the different kinds of cancer. I had to push-back against my Onc to hold-off on Chemo until we were sure. Repeated lab analyses proved that it was metastatic Rectal. (I was officially a butt-head)

I am truly blessed that the metastasis skipped my liver, and that the lung thingys have responded to the Folfiri Chemo. And for many prayers and God’s mercy.

May you all lead comfortable lives for years to come.

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

Posted: Tue Oct 15, 2019 2:13 pm
by claudine
Thank you so much for your testimony, Cured. Hopefully you can be true to your name and beat this thing one more time! As you can see from my signature, my husband is also dealing with lung mets; it's great to hear from another person for whom Folfiri did the trick for those! I assume you're on Avastin maintenance? I'm wondering if this is what is in store for my husband (once the adrenal met issue is resolved... Hopefully it will be).

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

Posted: Wed Nov 06, 2019 9:01 am
by horizon
disco nap wrote: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 :)


I'm in. We got this!

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

Posted: Thu Nov 07, 2019 1:45 am
by zx10guy
Despite the craziness with my CEA numbers for the past almost 3 years (I created a recent thread about this), with the recent scans I had which were CT, MRI, and PET/CT showing all clear, I'll be 7 years NED from stage3b colon cancer of my decending colon next month. Although I had a new primary in 2016 which was stage 0 appendicial cancer of which I'm just over 3 years NED from that one.

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

Posted: Sun Nov 10, 2019 6:20 pm
by Cured
To Claudine,
“As you can see from my signature, my husband is also dealing with lung mets; it's great to hear from another person for whom Folfiri did the trick for those! I assume you're on Avastin maintenance?”

After the Folfiri they had me do 4 doses of Avastin. This was to help both the colon cancer and to help the necrosis in the brain. It probably worked on the brain as the MRIs showed it cleared-up. But our bodies have microfages which naturally cleanup damaged tissue. So we assume that the infused drug helped. My Onc said that they don’t know how Avastin works (and that it is not considered chemo). If it were up to him alone I would have kept on chemo or returned to chemo soon, probably adding Avastin to 5FU. I prefer to allow my body to recover from all of the treatments and to see if it can heal naturally.

I do what I can by prayer and fasting. I continue to drink green tea and some turmeric. I keep in Ketosis with the hope to starve the cancer.
Still, I follow up with the doctors and get a CT scan and blood work on Wednesday.

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

Posted: Mon Nov 11, 2019 12:37 pm
by claudine
Thanks Cured! DH is getting his 16th infusion right now... Two more to go, then we'll see what happens.

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

Posted: Thu Nov 14, 2019 12:46 pm
by Annemiek
5 year scan clear!!!! * happy dance * * happy dance*
I owe the colonclub so much, this forum helped me through!!!

From 30% 5 years survival rate to just like anyone else, chances to be hit by a car are higher than cancer mets.

I have been officially released. For bonus miles I asked to have one more ct scan next year just in case. That’ll bring my no of ct scans to 20, nice even number! :lol:

For all those in the trenches. It’s not a fight you can win. But fight you must!!!

Love and hugs,
Annemiek

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

Posted: Thu Nov 14, 2019 1:19 pm
by claudine
This is wonderful, Anne! I also really like seeing in your signature that you're KRAS mutated. So even KRAS folks can beat this :) :) :)

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

Posted: Mon Mar 16, 2020 10:52 pm
by mmblz
4 years since finishing chemo (next week)!

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

Posted: Tue Mar 17, 2020 5:33 am
by AussieAssCancer
4 years tomorrow (18 March) as per my surgery date which revealed a complete pathological response!

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

Posted: Mon Mar 23, 2020 4:04 pm
by NHMike
Always good to see success stories. I'm sure you're looking forward to #5 and making the books.

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

Posted: Tue Mar 31, 2020 6:50 pm
by lpas
Five years, three months today. :D

Best wishes to all!!

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

Posted: Tue Apr 14, 2020 10:40 pm
by Cj51
10 years as of tomorrow. :-)