NED: Let's hope third time is a charm!

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NED: Let's hope third time is a charm!

Postby ginabeewell » Sun Sep 05, 2021 11:15 am

Last time, everyone seemed convinced I would recur - and in fact, I did.

Then Dr Kemeny ordered one round of 5FU + Vectibix to prep me for an ablation, then changed her mind and ordered 4 - and my met disappeared. She ordered 4 more "in hopes that will wipe it out forever" which she felt was possible given my past response. I made it to 3 before hitting critically low levels and not qualifying for the last.

If my math is right, that totals 36 rounds of chemo to get me to NED for a third - and hopefully lasting - time!

It feels different this time. The first time, I knew I wasn't done. The second time, I hoped I was. This time, I feel freer - although if i am 100% honest I am not sure that this has anything to do with my physical body at all. I have done a lot of therapy and feel like I am finally "healing" myself emotionally and can honestly say cancer has been the best worst thing that ever happened to me.

The night I got my all clear results, I went to bed and had a vision about what I could do next to pay it forward. It's ridiculous and impossible, but also hilarious and inspiring. Should it go forward, I promise I will tap this community to make it as good as it can be.

In the meantime, focused on trying to gain some weight and rebuild my strength. Still dragging unless I take half a Ritalin in the morning, which has been a fatigue lifesaver.

We have a new CEO at work, and I'm in prime position to make his transition easier. It's weird to look around and realize that after 26 years, you are one of the most senior people at the agency - like, how did that happen?? Just before Covid hit, I had it in my mind that I might want to be our CMO (we don't currently have one) but my CEO at the time didn't feel we needed one, nor did our COO who is still the person with whom I work most closely. But apparently the other day as they had a first meeting, the new CEO asked why don't we have a CMO, and he answered, "We essentially do - it's Gina. She just doesn't have the title." Which was exciting! At the same time, I have the sense that I may not be there in a year. Maybe my role will be helping to turn the page to new leadership / a new era, then leave it in the hands of my very capable direct reports. I would burst with pride to see what they would might be capable of accomplishing.

Trying not to spend too much time figuring it out. My future will find me, of that I am certain.
45 YO mom of twins (9) and lucky stepmom of 14/17 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
10/18 FOLFOX + Vectibix
12/18 typhlitis (7 days in hospital) but largest met down to 5 cm.
12/18 CEA 4.6
1/18 Resume chemo (#6-8)
3/19 HAI pump placement / colon resection
4/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/19 CEA 1.3
7/19 liver resection
10/19 liver resection
1/20 NED! CEA 0.6
3/20 two new liver mets; FOLFIRI (5) and then add Vectibix (5)
8/20 CEA 0.7
Resection next?

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Re: NED: Let's hope third time is a charm!

Postby roadrunner » Sun Sep 05, 2021 1:37 pm


I hope so too! You’ve fought long and hard for this high ground. I hope you enjoy it and claim it for always.

And don’t worry about paying it forward—you already have! I have followed your story since I was diagnosed over two years ago, and you have been an inspiration to me in dark times. In particular, a comment you made some time ago to the effect that “If cancer doesn’t kill me I wouldn’t change a thing” hit home for me, and has been a huge part of my reclaiming a positive outlook and energy to fight. (Here you said it’s “the best worst thing”) And I agree 100%!

I recognize that it is easier to say that in better times (where I am as well at present), and I don’t promise that I won’t get down or distracted if things go bad from here, but I think this is an incredibly powerful thought, particularly coming from someone like you, who’s really earned it. Honestly, at this point one of the greatest disappointments I’ll have if I bollocks it up from here is that the more focused, more empathetic, grateful, perceptive and caring post-cancer (I hope!) me didn’t have long to take on the world. But the good side is that maybe I’ll get to hang around with all those improvements in place. And I hope you do as well! Thanks!
7/19: Rectal cancer: Initially staged as IIIA, T2N1M0
Initially approx 4.25 cm, low/mid rectum, mod. well diff. adenocarcinoma
8/22 -10/14 4 rounds FOLFOX neoadjuvant, 3 w/Oxiplatin (lots of side effects/reduced size est. 70-75%)
neoadjuvant chemorad 11/19
4 rounds of FOLFOX July-August 2020
ncCR found 10/20; multiple biopsies negative
TAE 11/20, small amount of tumor removed, lung nodules orig id’d 6/20 stable Nov 2020
Chest CT 3/30/21 small growth in 2 nodules (3 and 5mm)
Stable in 6/28 scan.

Posts: 486
Joined: Mon Oct 01, 2018 4:29 pm

Re: NED: Let's hope third time is a charm!

Postby Punky44 » Mon Sep 06, 2021 11:32 pm

This is great news and you are such an inspiration! Congratulations on NED and in your career!
Caregiver to my amazing mom (68 at dx)
10/1/18 DX with rectal cancer; CEA 17
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
6/28/19 Reversal and port out
CEA 2.1; 1.9; 2.6; 2.8; 2.3; 2.4; 3.0; 3.4; 3.1
Latest update: 6/28/21: Clear CT with CEA 3.1 (attributed to emphysema)

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

Posts: 3629
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: NED: Let's hope third time is a charm!

Postby DarknessEmbraced » Tue Sep 07, 2021 8:01 am

Congratulations on being NED! :) I hope all goes well for you. *hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

Posts: 1518
Joined: Sat Aug 17, 2013 5:46 pm

Re: NED: Let's hope third time is a charm!

Postby stu » Tue Sep 07, 2021 11:47 am

There’s just something about you ! There really is ! Just delighted for you and very pleased to hear you have come to such a peaceful place too!
Looking forward to hearing your new life developments!
You have worked so , so hard in every aspect of your life !
Enjoy !
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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Joined: Sun Oct 11, 2020 8:54 pm

Re: NED: Let's hope third time is a charm!

Postby Bpaint » Tue Sep 07, 2021 11:52 am

Congrats Gina! I have been inspired following your story.
My husband (age 41 at dx):
8/20 CRC Stage 4. Mets to lungs, liver, distant lymph nodes (25+)
MSS, KRAS wild
CEA 713 at dx
Folfox (12 rounds)
CEA 113
Liver, colon and lymph node resection 4/21
New lung mets, Vectibix monotherapy started 6/21

Posts: 61
Joined: Fri Feb 26, 2021 10:36 am

Re: NED: Let's hope third time is a charm!

Postby Sunnycd » Tue Sep 07, 2021 1:17 pm

Oh, Gina, so happy for you! I have followed your journey, cried when you had bad news, and always wondered how you were doing! If you meditate, this may sound familiar…“May you be happy, may you be healthy, may you be safe, may you live at ease”….xoxo from NJ
DX Feb. ‘21 CC IIB @ 51
Jan. ‘21 ER surgery, temp. colostomy
Sigmoid, adernocarcinoma
T4aN0MX, G2
0/24 lymph nodes
LVI: indefinite
PNI: not identified
Margins: clear
March ‘21 started 4 rounds of CAPOX
06/17/21 last day of CAPOX
06/25/21 CT scan clear
CEA: @ dx 4, post surgery 1.9, post chemo: 2.9
07/14/21 colostomy reversal

Posts: 50
Joined: Tue Aug 13, 2019 11:40 am
Facebook Username: ma

Re: NED: Let's hope third time is a charm!

Postby Vana3 » Tue Sep 07, 2021 4:42 pm

I was wondering how you were doing! So glad to hear your good news, congratulations!
It was encouraging to read... I see Dr.Connell at MSK and am currently doing Folfiri and working my way towards a #3 as well.
Fingers crossed! :)
Dx 36 yr, F, 7/19
T4aN2M1 Cea 5.1
5 cm tumor in cecum removed, 17 out of 45 LN
1 cm omental deposit removed
Cea post surgery 4.2
MSS, KRAS g12d, Braf WT
MT: 10.9
8/20/19 MRI & PET small liver spots
9/19 - 3/20 FOLFOX
1/02/20 CEA 3.6, 2/15- 4.4 3/15- 4.6, 6/05 4.6
Liver resection 4/15/20
6/20 Ct scan clear
7/20 Cea 8.6
8/20 Cea 12.4, suspicious ovarian cyst
9/20 Hysterectomy SOB (Ovaries and uterus positive for CRC)
post surgery cea 2.6
11/20 clear scans
2/20 clear scans

Posts: 366
Joined: Tue Dec 25, 2018 8:08 pm

Re: NED: Let's hope third time is a charm!

Postby AmyG » Wed Sep 08, 2021 5:09 pm


I'm currently sitting on the porch, drinking a beer, watching the kids play on the swing set we built over the last two days. And here I thought my day just couldn't get any better!

I'm thrilled that you find yourself in NEDville. How about you stay there for good, okay?

I get a MRI, labs and a visit with the oncologist Monday. It's been six months since my last visit and I can say cancer, chemo and all the other bullshit really hasn't even crossed my mind.

I can't wait to hear about the next chapter in your journey!
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection 8/28/19
NED!! CEA 2.3
CEA 5.8 idk wtf is up with that, but everything else is clear!
CEA 3.7 make up your damn mind...
CEA 1.5 that's a new low!

Posts: 230
Joined: Thu Aug 01, 2019 10:58 am

Re: NED: Let's hope third time is a charm!

Postby Siti » Fri Sep 10, 2021 4:28 am

I’ve been following your journey, Gina and you’re certainly a warrior! The company is lucky to have you and I wish you and your loved ones a wonderful year ahead.
Wife of DH (54) DX on 5/7/19
Sigmoid | Adenocarcinoma | Grade: G3 | LNs: 30/31
Wild Type for KRAS, NRAS and BRAF
19/7/19 PET-CT Scan: Distant lymph nodes (para-aorta, neck & hip), est. size 0.5-1.5cm.
22/7/19 Surgery: Laparoscopic Colon Resection
26/8/19 Chemo: CAPEOX + Avastin x 7
6/11/19 CT Scan after 3rd cycle, all nodes have shrunk! Yay!! 20/12/19 Last round of Ox (NED)
1/2020 Maintenance: Cap + Avastin
4/2020 Maintenance: switch to Teysuno (S-1) + Avastin due to bad HFS side effects.

Posts: 544
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: NED: Let's hope third time is a charm!

Postby Claudine » Fri Sep 17, 2021 5:27 pm

YAY!!! So so happy for you. Look at Stu's mom - she had several setbacks, but got cured eventually. It seems to be the case for some: the cancer will come back, get knocked down, comes back, get knocked down, and eventually stops returning. Let this be your story, too!
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: low 3.2, now 81.1
Scan 03/19: Multiple small lung nodules, now gone/calcified
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and partial corpectomy 05/20
Scan 09/17/2021: stable

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