Stage 3c NED

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Stage 3c NED

Postby shinny » Sun Feb 10, 2019 4:48 am

I also posted this on the "For Stage III's: NED for how long now?" thread but I thought I'd post it as a separate thread too so it doesn't get lost.

I just wanted to post on here as this forum was invaluable to me when my Mam was diagnosed in April 2017. As most people probably do here, I read everything. Here are her stats:

Dx: 4th May 17
Age diagnosed: 69 (71 now)
Stage: T4/N2/M0 (Stage IIIc) 5/12 nodes positive. Right hemicolectomy surgery 26th May 2017. Lap/Robotic surgery.
Chemo Started 5th July 2017: FOLFOX & Oxaliplatin, 12 rounds (reduced by 20% at round 5)

We just got another clear scan last month and her blood test results are all good. CEA is now 2.4. We never got it before surgery, but it was 7.3 during treatment and then 3.2 just after she finished and then 3.0 and now 2.4. Her liver enzymes went array for a while during treatment but all are normal again except GGT which is now only slightly elevated. C reactive protein is 1.0 (range <5.0). We were also keeping an eye on CA19-9. It was 45 (range 0-37) just after she completed chemo and went down to 26.5 a couple of months after. We've not tracked it since however, I'll ask for it to be tested in her next set of blood taken.

Her vitamin D levels were dreadful at diagnosis so we invested in the Sperti Vitamin D lamp and she also took Thorne Vitamin D and K2 supplement drops each day (around 8-10 drops, we reduced this when we added the lamp in). We got her levels up from a paltry 13ng/ml to 52 ng/ml during treatment. If you have not researched the effects of low vitamin D and cancer, then look at this video:

She was considered NED after the surgery in May 2017 and then chemo was obviously done as a precaution. I'm not sure when most people start the clock as NED. However, our surgeon said it was from surgery. If we take it from the surgery point of view she is 20 months NED. If from point of completing chemo, she is 13 months NED.

Some things we did post-treatment.

CBD / THC blend taken daily. She still takes this.
Infrared Sauna 3/4 times a week at 45c to 50c for 30-40 mins. Sauna is less frequent now.
Quinton Isotonic Mineral supplement daily. She takes this daily and she reckons it made her bounce back much more quickly.

My Mam was extremely healthy otherwise. Ironically she was rarely sick. When we would all be hit by viruses etc, she'd usually be the one who was ok. Her health is fully back to normal now which is great and her energy levels are better than a lot of people half her age!!

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Re: Stage 3c NED

Postby stu » Sun Feb 10, 2019 11:45 am

Delighted to hear your mum is doing so well . Interesting about the vitamin D !! Might look into those lamps .
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

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Posts: 650
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Stage 3c NED

Postby LPL » Sun Feb 10, 2019 12:22 pm

shinny, thank you for sharing this positive report :)
Best wishes that your mother will stay NED for ever!
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb lung met

Posts: 5939
Joined: Sun Apr 16, 2006 4:09 pm

Re: Stage 3c NED

Postby Lee » Sun Feb 10, 2019 2:17 pm

Congratulations, may she always reside in NEDville,

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!

Posts: 334
Joined: Mon Oct 01, 2018 4:29 pm

Re: Stage 3c NED

Postby Punky44 » Sun Feb 10, 2019 3:38 pm

That’s awesome! I hope so much to be able to post something like this 20 months from now. Congratulations to you and your mom!
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17 at diagnosis
MRI/CT/PET puts staging at T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
CEA 4/23: 2.1; 7/24: 1.9
6/28/19 Reversal and port out

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

Deb m
Posts: 496
Joined: Tue Jan 14, 2014 10:08 am

Re: Stage 3c NED

Postby Deb m » Tue Feb 12, 2019 12:35 pm

That's great news. FYI, we started our NED status the day after surgery! Now go celebrate and do something special!


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Joined: Mon Sep 04, 2017 3:39 am

Re: Stage 3c NED

Postby shinny » Sat Feb 16, 2019 3:08 am

Hey all, thanks for your replies.

@Stu, absolutely do. We were shocked at how low my Mam's Vitamin D was when it was first taken. I've read so many articles on Vitamin D and links to cancer now that I am fully sure it is an important part of the puzzle. It's such an easy number to know by a simple blood test too. Just looking at your signature, wow your Mum is doing so well. Well done for helping her through this difficult journey.

@LPL, thank you. I really wanted to post and give other people (and carers) going through this some hope. You're almost afraid to post in case you curse it!! I wish you well on your journey.

@Lee, and you! Wow, 10 years is amazing. Thank you.

@Punky44, I am sure you will. This site has been so helpful for me. Reading the success stories of others who were somewhat similar to my Mam was so helpful to me. By the way, we all had to be tested too. I've had colonoscopies before. I had an undiagnosed grumbling appendix for years, finally burst in 2010 while on a trip to New York! So, as a result, I actually had a few colonoscopies in my 20's and 30's. I had one earlier this year off the back of my Mam's cancer diagnosis and it was clear, one small polyp was removed and it was fine. I think it was only 3mm. My sister and brother also got tested and both were fine. I have 3 more brothers and another sister, they still need to be tested.

@Deb, thanks for that. Yes, I think it would be right to say after surgery too so I'll stick with that marker from then and continue with our 20 months+ clock!! My parents were 50 years married last year so we as having a big party for them next month as we decided to wait until my Mam was up for it. Technically it’ll be their 51st wedding anniversary :)

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