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

Please feel free to read, share your thoughts, your stories and connect with others!
User avatar
ginabeewell
Posts: 565
Joined: Wed Oct 24, 2018 10:30 am

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.
49 YO mom of twins (11) lucky stepmom of 16/19 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
Currently NED!

Join me on a lookback of my journey via my Strive for Five on Substack here:
https://ginajacobson.substack.com

All treatment details here:
https://www.weareallmadeofstars.net/col ... nt-journey

My favorite posts here:
https://weareallmadeofstars.net/favorite-posts

roadrunner
Posts: 460
Joined: Sun Jan 12, 2020 8:46 pm

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

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

Gina:

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: RC: Staged IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.; lung micronodule
8/19-10/19 4 rds.FOLFOX neoadjuvant, 3 w/Oxiplatin (reduced 70-75%)
neoadjuvant chemorad 11/19
4 rounds FOLFOX July-August 2020
ncCR 10/20; biopsies neg
TAE 11/20, tumor cells removed
Chest CT 3/30/21 growth in 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT nodule 1/22
6/20/22 TAE rectal polyp benign)
NED from 3/22 - 3/23
4 cycles FOLFIRI
LUL VATS lobectomy for radio resistant met 7/7/23

Punky44
Posts: 498
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
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
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; 3.4; 3.0; 3.1; 2.6
Latest update: 8/21/23 Clear CT with CEA 2.6!

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

DarknessEmbraced
Posts: 3816
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! :)

stu
Posts: 1613
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 !
Stu
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 .

Bpaint
Posts: 68
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.
husband (age 41 at dx):
8/20 CRC Stage 4. Mets to lungs, liver, distant lymph nodes
MSS, KRAS wild
CEA 713 at dx
Folfox (12 rounds)
Liver, colon and node resection 4/21
New lung mets, Vectibix monotherapy started 6/21
Stop Vectibix lungs stable about 6 months; all other areas stable
Start Folfiri + avastin 1/22
Stop Folfiri (lungs stable 6 mos); start Vectibix 7/22
Stop Vectibix 12/22 (lungs stable 5 mos this time)
SBRT on lung Mets scheduled for 1/22, will restart Folfiri

Sunnycd
Posts: 88
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; 09/21: 1.5
07/14/21 colostomy reversal
09/24/21 CT clear
10/12/21 colonoscopy; 1 polyp
12/05/23 colonoscopy clear
MSS, RAS/RAF wild, PIK3CA mutant

Vana3
Posts: 59
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
5 cm tumor in cecum removed, 17 + out of 45 LN
Cea 4.2
MSS, KRAS g12d, Braf WT
MT: 10.9
8/20/19 MRI & PET liver spots
9/19 - 3/20 FOLFOX
1/20 CEA 3.6,4.4, 4.6, 4.6
Liver resect 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 CRC
post surgery cea 2.6
11/20 clear scans
2/21 clear scans
4/21 spleen met
5/21 pet scan picks up subtle concerns in liver as well as confirms spleen
Cea 4.6
5/21 to current folfiri
Cea 10

AmyG
Posts: 371
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

Gina!!!!!!

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
KRAS/BRAF wild
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!

Siti
Posts: 269
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.
DH (54) DX on 5/7/19
Sigmoid|G3|LN:30/31|MSS|WT KRAS, NRAS, BRAF
7/19 PET distant LN para-aorta neck hip (0.5-1.5cm)
7/19 Lap resection
26/8 to 20/12/19 CAPEOX+Bev 7x
6/11/19 CT 3 cycle LN shrunk
1/20 Cap+Bev
4/20 TS-1+Bev due to bad HFS
NED 4 years
8/23 PET recurrence chest LN growing since Feb. CEA May(4.5>5.1>5.9)
9/23 Stopped Bev, CEA Sept(8.7) Radio 17x
11/23 PET 1+ supraclavicular LN, CEA (3.4>2.5)
12/23 Lymphadenectomy
1/24 Narrow margins, 1/5 +LN, 1.4cm +tissue, TMB (19)

claudine
Posts: 809
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

Tumors: L4 04/18; left adrenal gland & small lung nodules 03/19
rectum 02/22 (pT3 pN0 stage 2A); L3 09/22

Surgeries: intestinal resect. 05/18 (no cancer - Crohn's); adrenalectomy 02/20
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22; Xeloda/Avastin since 01/24


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: No registered users and 116 guests