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

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Lee
Posts: 5971
Joined: Sun Apr 16, 2006 4:09 pm

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

Postby Lee » Sat Oct 12, 2019 6:40 pm

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
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

stpio
Posts: 258
Joined: Mon May 26, 2008 6:14 am

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

Postby stpio » Tue Oct 15, 2019 1:21 am

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
Female
Surgery July 17, 2007 Stage III
1 foot of colon removed near spleen
1/21 positive LN
5FU/Leucovorin/Oxilaplatin for 6 months
Completed chemo January 2008
Stage 1 Breast Cancer 2010/radiation Tamoxifen

Cured
Posts: 533
Joined: Thu Nov 27, 2008 10:53 pm
Location: MO

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

Postby Cured » Tue Oct 15, 2019 12:23 pm

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.
5-08:Stg 3 Rectal: 6/14 Nodes
Ace Surgeon Remvd 90%Rectum,lots of Colon-Full Incision
Ileo Rev'd 6 Mos.
Radiatn+5fu Pre-Surgery
FOLFOX 8 CyclDone 1-09
Clear Scope 8-17; CEA 2-18
Glory to God! Healed by prayers of many: for 10 years
7-18: tumor pressing against brain Removed
Metastatic to lung. CEA 6.9
Folfiri
CEA to 4.5 after 1 chemo
After 8rds CEA 3
CEA 1.8, 2.3,1.7
12 rds Folfiri
Avastin evy 3 wks
Had Seizure Anti-seizure meds work-no driving for 6 months
Neuro allows me to drive again 0 meds

Claudine
Posts: 165
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

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

Postby Claudine » Tue Oct 15, 2019 2:13 pm

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).
Wife of Dx 04/2018 (51 yo). MSS, KRAS mutated G12A
No primary, lytic tumor L4 vertebrae, CEA 10
Radiation 04/2018
Resection small intestine 05/18 (no cancer found - Crohn's)
Xelox * 6, 05/2018 to 10/2018
6.7 cm left adrenal mass 03/14/2019, 4.4 cm 05/21, 4.1 cm 09/16
SBRT L4 02/2019
Folfiri + Avastin
CEA since 03/15: 58, then low of 3.2 now at 5.0 (twice)
Scan 03/14: Multiple small lung nodules
Scan 05/21: shrinking
Scan 09/16: lungs show no abnormalities (YAY!!!)

User avatar
horizon
Posts: 1517
Joined: Tue Apr 12, 2011 10:10 pm

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

Postby horizon » Wed Nov 06, 2019 9:01 am

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!
I'm just a dude who still can't believe he had a resection and went through chemo (currently 8 years NED). Is this real life?

zx10guy
Posts: 200
Joined: Mon Jan 07, 2013 12:54 pm

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

Postby zx10guy » Thu Nov 07, 2019 1:45 am

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.

Cured
Posts: 533
Joined: Thu Nov 27, 2008 10:53 pm
Location: MO

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

Postby Cured » Sun Nov 10, 2019 6:20 pm

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.
5-08:Stg 3 Rectal: 6/14 Nodes
Ace Surgeon Remvd 90%Rectum,lots of Colon-Full Incision
Ileo Rev'd 6 Mos.
Radiatn+5fu Pre-Surgery
FOLFOX 8 CyclDone 1-09
Clear Scope 8-17; CEA 2-18
Glory to God! Healed by prayers of many: for 10 years
7-18: tumor pressing against brain Removed
Metastatic to lung. CEA 6.9
Folfiri
CEA to 4.5 after 1 chemo
After 8rds CEA 3
CEA 1.8, 2.3,1.7
12 rds Folfiri
Avastin evy 3 wks
Had Seizure Anti-seizure meds work-no driving for 6 months
Neuro allows me to drive again 0 meds

Claudine
Posts: 165
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

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

Postby Claudine » Mon Nov 11, 2019 12:37 pm

Thanks Cured! DH is getting his 16th infusion right now... Two more to go, then we'll see what happens.
Wife of Dx 04/2018 (51 yo). MSS, KRAS mutated G12A
No primary, lytic tumor L4 vertebrae, CEA 10
Radiation 04/2018
Resection small intestine 05/18 (no cancer found - Crohn's)
Xelox * 6, 05/2018 to 10/2018
6.7 cm left adrenal mass 03/14/2019, 4.4 cm 05/21, 4.1 cm 09/16
SBRT L4 02/2019
Folfiri + Avastin
CEA since 03/15: 58, then low of 3.2 now at 5.0 (twice)
Scan 03/14: Multiple small lung nodules
Scan 05/21: shrinking
Scan 09/16: lungs show no abnormalities (YAY!!!)


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