Celebrating 10 years since my Stage IV DX!!!!!

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Mattie
Posts: 73
Joined: Fri Mar 07, 2014 1:06 am

Celebrating 10 years since my Stage IV DX!!!!!

Postby Mattie » Sun May 24, 2020 11:16 am

Hi all, JUST SO HAPPY With these results!!!!



CT SCAN OF THE CHEST, ABDOMEN AND PELVIS with IV contrast 5/14/2020
9:10 AM

HISTORY: Colon cancer, follow-up

TECHNIQUE: CT examination of the chest, abdomen, and pelvis was
performed following the intravenous administration of 125 mL
Isovue-370. Sagittal, coronal and 3-D reformatted images were
provided. CT dose lowering techniques were used, to include:
automated exposure control, adjustment for patient size, and or use of
iterative reconstruction.

COMPARISON: December 23, 2019

FINDINGS:
Chest:
Pulmonary Parenchyma and Airways: 3 mm nodule peripheral left lower
lobe (series 5 image 201), unchanged. No new pulmonary nodule. Lungs
otherwise clear. The trachea and airways are normal.

Pleural and Pericardial Spaces: No pleural or pericardial effusion.
No obvious pleural or pericardial mass.

Mediastinum and Hila: Simple cyst adjacent to the right atrium (series
2 image 63) measures 1.8 x 4.2 cm, unchanged; Hounsfield density is 6,
consistent with water density. This is consistent with a benign
pericardial cyst, stable..

Chest wall and axilla: No mass or adenopathy.

Cardiovascular: No evidence of aortic aneurysm or aortic dissection.
The heart size is normal. The pulmonary artery is normal in size.

Abdomen:
Liver: 5 mm hypodensity right lobe of liver (series 2 image 99), 2
small to characterize but unchanged. Unchanged resection posterior
right lobe with no recurrent lesion. No new liver lesion. No
intrahepatic or extrahepatic biliary ductal dilatation.

Gallbladder: Numerous small dependent gallstones unchanged. No
gallbladder inflammation.

Pancreas: Normal. No ductal dilatation.

Spleen: Normal.

Kidneys: No hydronephrosis, mass, or stone.

Adrenals: Normal.

Stomach and Small Bowel: No bowel wall thickening or dilatation.

Appendix, Colon, and Rectum: Appendectomy. Rectosigmoid anastomosis
intact. Previously appreciated wall thickening at the anastomosis is
no longer present.

Peritoneum/Mesentery: Unremarkable.

Retroperitoneum: No mass or adenopathy.

Abdominal Wall: Left periumbilical hernia contains a single loop of
nondilated small bowel, unchanged.

IVC and Aorta: No aneurysm.

Ascites: None.

Free Air: None .

Pelvis:
Urinary Bladder: Normal.

Reproductive Organs: Hysterectomy. No adnexal mass.

Nodes: No adenopathy.

Bones: No fracture or aggressive osseous lesion.

IMPRESSION:
1. Stable exam. There is no evidence of metastatic or recurrent
disease.
4/10 debulk surgery, DX stage IVb, 49yo
5/10-11/11 Folfox, then Xeloda/Avastin
4/13 Resect liver met + pelvic node, 20+ Rad treatments
7/14 SBRT 15 mm Liver & node
12/14 SBRT 8 mm Liver met
3/16 4-5 pelvic nodes, Xeloda/Avastin again
12/16 NED, maintaining Xeloda/Avastin
8/17 NED Dropping Xeloda. Avastin only.
4/20 still NED Avastin only.

boxhill
Posts: 591
Joined: Fri Apr 06, 2018 11:40 am

Re: Celebrating 10 years since my Stage IV DX!!!!!

Postby boxhill » Sun May 24, 2020 3:35 pm

Yay! Many happy returns of the day!
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 CT NED
11/18 CT NED
12/18 MRI 5mm liver mass, 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Suspend treatment

lovelife789
Posts: 160
Joined: Thu Aug 24, 2017 5:28 am

Re: Celebrating 10 years since my Stage IV DX!!!!!

Postby lovelife789 » Sun May 24, 2020 3:41 pm

Wow your story is amazing!gives lots of us hope :D
May I know what nodes did you have mets?

Thanks in advance for sharing :P
F/38 - Dx 8 Mar 17, CEA 189.5
Stage IV Sig. Colon, Liver mets, T3N0M1a, KRAS NRAS Wild
3/17- 6/17 - 6 x FOLFOX + Erbitux
7/17 - 1st & 2nd Liver resec
9-12/17' - 13 x FOLFOX
1-6/18 - NED
6/18 - PET SCAN showed a 0.8mm lung nodule, VATs
8/18 - 4/19 - NED
5/19 - recurrence 1 x PALN, 1x common iliac
FOLFIRI + Avastin x 12 - complete response, SBRT
12/19-5/20 - NED
5/20 - recurrence in LNs, tiny liver spots x 2, W n W due to COVID
8/20 - LNs very slightly increased, liver stable, one new liver spot

Mattie
Posts: 73
Joined: Fri Mar 07, 2014 1:06 am

Re: Celebrating 10 years since my Stage IV DX!!!!!

Postby Mattie » Sun May 24, 2020 5:21 pm

Hi Lovelife,

thank you for your note. I had mets in my liver and lymph nodes in my abdomen.

When first Diagnosed 13 of 16 lymph nodes came back positive for cancer.

Best,
Sue
4/10 debulk surgery, DX stage IVb, 49yo
5/10-11/11 Folfox, then Xeloda/Avastin
4/13 Resect liver met + pelvic node, 20+ Rad treatments
7/14 SBRT 15 mm Liver & node
12/14 SBRT 8 mm Liver met
3/16 4-5 pelvic nodes, Xeloda/Avastin again
12/16 NED, maintaining Xeloda/Avastin
8/17 NED Dropping Xeloda. Avastin only.
4/20 still NED Avastin only.

ChiMama
Posts: 33
Joined: Wed Jul 20, 2016 8:41 pm
Location: PHX

Re: Celebrating 10 years since my Stage IV DX!!!!!

Postby ChiMama » Sun May 24, 2020 11:25 pm

AWESOME!! Congratulations!
4/21/16 First Colonoscopy @59
DX high grade dysplasia
Fibroid uterus, liver cysts, lung nodules
6/17/16 Open surgery: hysterectomy, X 12.5cm sigmoid, 29 LN
T2N0M0 Stage 1 Mod diff adeno 5.2cm x 4.1. Gyne benign, Lynch neg
CT 7/27/16 Ground Glass & spiculated lung nodules, thyroid nods, watching.
2017/18/19 Scopes: polyps. Scans stable
2019 Endo: hiatal hernia. 2 breast biopsies, benign
5/20 GGN 1.1cm. Biopsy: adenocarcinoma/primary lung cancer. Robotic VATS upper left lobe. 1A
Mama to a rescue Chihuahua

Siti
Posts: 175
Joined: Thu Aug 01, 2019 10:58 am

Re: Celebrating 10 years since my Stage IV DX!!!!!

Postby Siti » Mon May 25, 2020 5:56 am

Thanks for the update. I really needed to read this. It’s our wedding anniversary today, instead of celebrating, I am hiding in my room crying. This gives us a lot of hope.
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.

Claudine
Posts: 410
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Celebrating 10 years since my Stage IV DX!!!!!

Postby Claudine » Mon May 25, 2020 8:37 pm

That is fantastic! Thank you for posting and giving us hope!
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: high 58, low 3.2, now 24.1
Scan 03/19: Multiple small lung nodules up to 5mm
Scan 12/19: one 1mm stable nodule
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and residual tumor removal 05/20

User avatar
CRguy
Posts: 10231
Joined: Sun Feb 10, 2008 6:00 pm

Re: Celebrating 10 years since my Stage IV DX!!!!!

Postby CRguy » Mon May 25, 2020 9:25 pm

Damn Straight :shock:
That kicks colorectal BUTT !!!!!

Keep ON keepin' ON sista'

Cheers and Harmony
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
13 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

Carboxo
Posts: 25
Joined: Sat Nov 02, 2019 5:10 pm

Re: Celebrating 10 years since my Stage IV DX!!!!!

Postby Carboxo » Mon May 25, 2020 11:12 pm

Awesome Scan Results :D
DS: caregiver
48, female
DX: RC, Adenocarcinoma
G2: Moderately differentiated
pT1N1bM0 Stage IIIA
Positive lymph’s:, 2/15
Baseline CEA value 2.5
Tumor invades submucosa
Perineural invasion (PNI) present
Surgical margins: clear
MSS,KRAS/BRAF status: WT
LAR robotic, colectomy, with Ileostomy 9/4/19
Radiation therapy (if any): Chemo/rad scheduled next
Chemotherapy:XELODA,CAPEOX, started 10/28/19

User avatar
beach sunrise
Posts: 225
Joined: Thu Mar 05, 2020 7:14 pm

Re: Celebrating 10 years since my Stage IV DX!!!!!

Postby beach sunrise » Tue May 26, 2020 10:20 pm

I love hearing news like this!!! Thank you and big congrats!!!
8/19 RC CEA 86 T3N0M0
Neoadj 5FU/rad 6 wk
Surg 1-21-20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
mFOLFOX6 CEA 7
8 rds 6-10 CEA 11.4 4 more no oxa
6-17 CEA 11.1
7-2 CEA 11.1
7-16 CEA 10.3
7-28 CEA 8.8
8-11 CEA 7.8
9-1 CEA 8.8
9-8 CEA 9
9-16 CEA 9
9-22 CEA 8.6
9-28 CEA 8.5
MHL1+
PMS2+
MSH2+
MSH6+
POLD1
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

Gravelyguy
Posts: 319
Joined: Thu Jul 05, 2018 6:03 pm

Re: Celebrating 10 years since my Stage IV DX!!!!!

Postby Gravelyguy » Wed May 27, 2020 8:20 am

Congrats and thank you for the hope you give!

Dave
6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 clear scans, CEA .9 still NED!
6/11/19 clear scans CEA 1.0
12/19/19 clear scans CEA 1.0 still NED!
6/17/20 clear scans CEA 1.1 still NED!

Rikimaroo
Posts: 317
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

Re: Celebrating 10 years since my Stage IV DX!!!!!

Postby Rikimaroo » Wed May 27, 2020 7:39 pm

Mattie,

It is very encouraging to read your signature and happy that you are 10 years since diagnose and alive. Are you basically doing maintenance chemo since this beast will not leave unless you keep on the chemo?

I just got my pet scan back and again my cancer recurred in the same location in which I recently had surgery. It's really shocking and troubling for it to return after everything I done. Doc said we are going to do maintainence chemo Folfiri and maybe folfox to switch thing if needed, and if things start going back down, maybe just xeloda, which seems like your regime. Also I am going to do avastin. With all this being said, looks like there is positives.

Question for you did you have any particular Mutation with your cancer? NRAS/ KRAS etc..?
RC T3N1M0 12/16
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/2017, folfox - avastin 12/2017
LAR/Liver Resect 4/2018
Chemo Finish 8/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
FolFiri 11/6 - 5 rounds
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
Maintenance Chemo begin 6/3/20 FolFiri

Koreysue
Posts: 154
Joined: Mon Apr 30, 2018 2:36 pm

Re: Celebrating 10 years since my Stage IV DX!!!!!

Postby Koreysue » Thu May 28, 2020 2:08 am

Congrats to you! And thank you for this post of hope.
Ksue
Diagnosed: June 2017 stage 3 colon cancer
Sigmoid colon, 2 nodes affected
CEA at diagnosis: 6
Sigmoid Colectomy and folfox (chemo complete January 31, 2018)
CEA 4/2018: 2.4
CEA 7/2018: 3.7
Colonoscopy 8/2018 clean
PET scan 8/20/18 NED
CEA 11/2018: 3.8
CEA 2/2019: 3.2
CT NED 6/18/2019 / CEA : 3.4
CEA 10/21/19: 3.2
CEA 3/9/20: 3.8
CT NED /CEA 6/17/20: 3.8

User avatar
Atoq
Posts: 384
Joined: Wed Oct 25, 2017 9:31 am

Re: Celebrating 10 years since my Stage IV DX!!!!!

Postby Atoq » Thu May 28, 2020 4:30 am

Congratulations and thanks for telling us! :D

Best


Claudia
1972, 2 kids
Dx rectal cancer 10.2017
T3N2aMX (suspect met left lung 8 mm)
Lynch neg
CEA 1.8
Neoadjuvant chemoradio Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle lung biopsy , stage IV
07.05.18 CAT scan, lung met 11 mm
04.06.18 ileo reversal
26.06.18 wedge VATS
24.08.18, 31.02.19 CAT scan
12.09.18, 06.02.19 scope, CEA 1.6
19.11.18 colonscopy
20.08.19 CAT, eco
13.09.19 scope, CEA 1.2
18.03.20 CAT, eco, scope, NED

Mattie
Posts: 73
Joined: Fri Mar 07, 2014 1:06 am

Re: Celebrating 10 years since my Stage IV DX!!!!!

Postby Mattie » Sat May 30, 2020 6:22 pm

Hi there.

Since my last recurrence in March 2016, my Onc has suggested I need to stay on something because "it will definitely come back".

Xeloda seems to kick Cancer ass every time I take it. When it comes back, I'll probably add that back in first to see if it still works. I dropped to Avastin only and have been doing that since Sept 2017....The thinking is that it is keeping me stable....and onc doesn't want to drop it because side effects are minimal and it appears to be working. He says that sometimes when you stop, it doesn't work the same if you need it again. So I am going to keep going. I feel pretty good all things considered.

Good luck to you, I know when it comes back it's the worse. It's happen several times to me now. But we just have to keep getting after it....mine also keep coming back in the same area.



Rikimaroo wrote:Mattie,

It is very encouraging to read your signature and happy that you are 10 years since diagnose and alive. Are you basically doing maintenance chemo since this beast will not leave unless you keep on the chemo?

I just got my pet scan back and again my cancer recurred in the same location in which I recently had surgery. It's really shocking and troubling for it to return after everything I done. Doc said we are going to do maintainence chemo Folfiri and maybe folfox to switch thing if needed, and if things start going back down, maybe just xeloda, which seems like your regime. Also I am going to do avastin. With all this being said, looks like there is positives.

Question for you did you have any particular Mutation with your cancer? NRAS/ KRAS etc..?
4/10 debulk surgery, DX stage IVb, 49yo
5/10-11/11 Folfox, then Xeloda/Avastin
4/13 Resect liver met + pelvic node, 20+ Rad treatments
7/14 SBRT 15 mm Liver & node
12/14 SBRT 8 mm Liver met
3/16 4-5 pelvic nodes, Xeloda/Avastin again
12/16 NED, maintaining Xeloda/Avastin
8/17 NED Dropping Xeloda. Avastin only.
4/20 still NED Avastin only.


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