Stage 3b with ovarian met recurrence and healthy now

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Dh13
Posts: 4
Joined: Sun Mar 25, 2018 9:49 am

Stage 3b with ovarian met recurrence and healthy now

Postby Dh13 » Sun Mar 25, 2018 10:25 am

I am posting my story because I could not find anyone with a similar story when I was scared and looking on forums. I was diagnosed with Stage 3b colon cancer in November of 2013 at 43 years old. I was a very, very good marathon runner with a best of 2:48, ate well and drank very little so cancer was not something anyone expected as is often the case. I had a temporary colostomy bag for 5 weeks and 5 days. Then, I started six months of chemo with the standard FOLFOX treatment. Everything went fine and I had very few side effects during or after. I finished chemo in late June 2014. I had a weird bleeding episode after a period in April 2015 and told my oncologist. I also reported being tired for the first time ever, including during chemo. He told me I was probably going through early menopause. Six months later I was diagnosed with a metastasis to my right ovary after they removed it due to the mass on it. It was determined there was no other evidence of disease and after getting two second opinions and changing oncologists, they all arrived at the same conclusion based on scans. I did not receive any further treatment after the resection of my one ovary. That was in October of 2015 and I have been disease free since then.

Fingers crossed it continues. Someone has to live so why not me? ’m just sharing because I couldn’t find anyone with a singular met to one ovary.

DebZ
Posts: 80
Joined: Fri Nov 14, 2014 9:01 pm
Facebook Username: Bulc

Re: Stage 3b with ovarian met recurrence and healthy now

Postby DebZ » Sun Mar 25, 2018 1:56 pm

You're not alone! After a colon resection and six months Folfox, I thought I was done. At three-month checkup my CEA was up and I had mets on ovary and liver. More chemo, big operation, and waited another couple months. Another CEA jump and it was in both lungs. I've been stable for a while with lots of chemo (more than 50 rounds now), but CEA is climbing again. I'm glad to hear you've been NED! There are a few of us here that had mets to ovaries, although I was told not common at all.
48 @ diagnosis Sept 2014
MSS; Kras mutant G12D
Oct 2014: right hemicolectomy
Dec 2014-May 2015: Folfox
June 2015: clean scans
Sept 2015: scans reveal ovarian mass and liver met; Folfiri
Jan 2016: liver wedge resection and hysterectomy
April 2016: multiple lung mets; Folfiri+Avastin
June 2017: lung mets growing; switch to Folfox+Avastin
Jan-April 2018: dropped oxali; CEA rising
May 2018: back on Folfox+Avastin, add pulse steroid treatment to get platelet count up (continuously in 50s)

MissMolly
Posts: 520
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Stage 3b with ovarian met recurrence and healthy now

Postby MissMolly » Sun Mar 25, 2018 2:00 pm

DH13:
Wow ! Your marathon time of 2:48 is impressive and a solid accomplishment of body, mind, and spirit.

I am a former marathon runner (my best course time a more humble 3:15). I credit my natural love of long distance running with giving me a foundation in facing multiple and complex health issues. Although I am no longer able to run due to avascular necrosis of my hips from extended use of corticosteroids, I remain fiercely determined to remain upright, standing, on my feet. It is not always easy.

I hope you have the joy of running many more miles and a body free of cancer, NED,
Karen
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

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Atoq
Posts: 264
Joined: Wed Oct 25, 2017 9:31 am

Re: Stage 3b with ovarian met recurrence and healthy now

Postby Atoq » Sun Mar 25, 2018 4:08 pm

Congratulations on the excellent time on the marathon!

I never run a whole marathon but only half (best time 1h 20min).

Did you manage to start running again after you have been NED?

I also have one metastasis to the lungs but they want to wait three months to make a new CT scan, probably because waiting migh allow more to show up. No chemo other than neoadjuvant.

Best and wish you will stay NED forever!

Claudia
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
Neoadjuvant chemoradiotherapy Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle biopsy of lung, updated to stage IV
07.05.18 CAT scan, lung metastasis 11 mm
04.06.18 ileostomy reversal
26.06.18 wedge VATS surgery

Dh13
Posts: 4
Joined: Sun Mar 25, 2018 9:49 am

Re: Stage 3b with ovarian met recurrence and healthy now

Postby Dh13 » Mon Mar 26, 2018 6:43 am

DebZ wrote:You're not alone! After a colon resection and six months Folfox, I thought I was done. At three-month checkup my CEA was up and I had mets on ovary and liver. More chemo, big operation, and waited another couple months. Another CEA jump and it was in both lungs. I've been stable for a while with lots of chemo (more than 50 rounds now), but CEA is climbing again. I'm glad to hear you've been NED! There are a few of us here that had mets to ovaries, although I was told not common at all.



I was posting because I could not find anyone who had only one met to one ovary. So, while I know metastasis to an ovary and other places is not uncommon, it appears uncommon to have only one detectable met to an ovary. I was not able to find any information from anyone who had one metastasis to one ovary.

Dh13
Posts: 4
Joined: Sun Mar 25, 2018 9:49 am

Re: Stage 3b with ovarian met recurrence and healthy now

Postby Dh13 » Mon Mar 26, 2018 6:46 am

I ran through the last three months of chemo. It was extremely difficult and my breathing was incredibly labored. I was not able to run very far, either. I never thought I would be able to run more than a couple of miles. But, I was incredibly grateful even for those. Well, I was wrong and I was able to run a whole lot more than a couple miles, but I have not run a marathon or more than 15 miles, yet. Running is my sanity. :D

StDrogo
Posts: 16
Joined: Thu Jun 08, 2017 7:54 pm

Re: Stage 3b with ovarian met recurrence and healthy now

Postby StDrogo » Wed Mar 28, 2018 6:50 am

Dh13, my wife has had a similar course thus far—she was diagnosed with a solitary met to her left ovary, which was resected first; in December, eight months after her first intervention in March, she had HIPEC, prophylactically since exploratory laparotomy/pathology revealed no evidence of malignancy.
Wife Age 33
02/17 dx Ovarian mass, ascites, pleural effusions
03/17 Resection of 16 x 20 cm ovarian mass; CEA = 10, CA125 = 180, CA19-9 = 36
04/17 Emergency surgery, diastatic perforation, purulent peritonitis, extended right hemicolectomy, well-differentiated adenocarcinoma in splenic flexure, 1/16 lymph
11/17 CT = NED, CEA < 1
12/17 CRS (peritoneal nodules of foreign body giant cell reaction, no evidence of malignancy; liver resection—1 cm FBGCR and .5 cm focal nodular hyperplasia), HIPEC

daisy9051
Posts: 9
Joined: Sat Jan 18, 2014 3:24 pm

Re: Stage 3b with ovarian met recurrence and healthy now

Postby daisy9051 » Wed Mar 28, 2018 11:24 am

Hi there! I had a solitary met to my left ovary in 2013 which was removed. The oncologists were unsure of correct tx due to unusual presentation, so I did 3 cycles of FOLFOX. I recurred after 2.5 years in peritoneum and solitary lymph node. I had HIPEC in Dec 2015, 11 rounds of FOLFOX and have been NED since. All the best to you!
40 yo mom of 4 girls
4/13: 14 cm L ovarian muc adeno, pthlgy consistent w colon primary
Neg scopes/ CT
6/13: surgery, NED, 0/22 LN, no primary found
8/13: neg MRI, scopes, XELOX 3x
10/15: recur periaortic lymph nodes/peritoneum
12/15: HIPEC w/ oxi
1/16: start FOLFOX, bowel obstructions post-op

Steph20021
Posts: 513
Joined: Sat Dec 27, 2014 4:58 pm
Location: Ontario, Canada

Re: Stage 3b with ovarian met recurrence and healthy now

Postby Steph20021 » Sun Apr 01, 2018 1:23 am

Dh13 wrote:
DebZ wrote:You're not alone! After a colon resection and six months Folfox, I thought I was done. At three-month checkup my CEA was up and I had mets on ovary and liver. More chemo, big operation, and waited another couple months. Another CEA jump and it was in both lungs. I've been stable for a while with lots of chemo (more than 50 rounds now), but CEA is climbing again. I'm glad to hear you've been NED! There are a few of us here that had mets to ovaries, although I was told not common at all.



I was posting because I could not find anyone who had only one met to one ovary. So, while I know metastasis to an ovary and other places is not uncommon, it appears uncommon to have only one detectable met to an ovary. I was not able to find any information from anyone who had one metastasis to one ovary.


Dh13- Like you, I had one met to one ovary but mine was at my diagnosis. I did the 6 months adjuvant Folfox chemo like you but immediately upon finishing it was only on the other ovary. So I had to go back on chemo. I still hav3 no lung or liver mets after four years, mine is limited to my pelvis/abdomen cavity and abdo wall.
DX 1/31/14 @ 33- SPS-T4a(invades visceral peri), N2a(6/106 LN), M1a(ovary) (Stage 4a) MSS
2/1/14-subtotal col, lost R ovary, temp ileo
3/14-9/14- folfox; sepsis
11/14-CT/PET: L ovary met, pelvic met, (?)ghost liver met(?)
12/14-folfiri -13 rds kept me stable from 3/15-6/15
8/15-HIPEC, hysterectomy et al, 2nd temp ileo, NED?
09/15- cea 0.9
05/16- recurrence in abdo wall and lymph nodes
Jan/17- pulmonary embolism
Feb/17- 1 wk radiation to abdo wall
Currently stable suce Aug/16- on folfiri

Nicolouna
Posts: 30
Joined: Fri Nov 08, 2013 6:30 pm

Re: Stage 3b with ovarian met recurrence and healthy now

Postby Nicolouna » Thu Apr 12, 2018 2:08 am

I had mets to my left ovary and duodenum/pancreas 4 years after my initial diagnosis of colon cancer. Both have been resected. My surgeon believes these are 2 new separate cancers whereas my onco believes they are both mets. Very confusing and an atypical presentation as they say. All my tissues are being re-examined extensively to determine exactly what they are but I am being treated as if they are mets...
Diagnosed @ 27, female w colon cancer (T4N0M0)
Right hemicolectomy -Aug 2013
FOLFOX - Oct 2013 - April 2014
May 2016 - had a baby ❤️
June 2017 - L ovarian malignancy (L ovary and tube removed) - ?met unsure
July 2017 - ?met to duodenum/pancreas
Started FOLFIRI Aug 2017
Dec 2017 - Whipple’s surgery. 1/36 lymph nodes+, treating it as mCRC - pathology not quite the same as original tumor
Scans postop - declared NED
Continuing FOLFIRI (12 cycles total) until May 2018
What a journey....


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