Such a blow!

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Lydia666
Posts: 674
Joined: Sat Jun 06, 2015 6:50 pm
Location: Montreal, Canada

Such a blow!

Postby Lydia666 » Mon Oct 01, 2018 5:21 pm

So i found out today that my colon cancer is back, a tumor on the outside of colon and lymphnodes, dont know exactly where. This is awful! Has someone on here survived this?

Thank you for any encouragement!
Oct 2012- thyroid cancer
June 19, 2015 Dx@39 yrs- CRC-T3N1M0
No vascular, no perineural invasion
Aug-Sept 2015- 28 rad/5FU
Oct 28, 2015- LAR- temp ileo, neg. nodes- 0/11
March 2016- 6 rounds Xeloda/positive CHEK2 mutation
July 2016- ileo reversal
August 2016- DCIS
Feb 24,2017- prophylactic double mastectomy
May 2018 - clean CT
Sept 2018-clean scope
Devastation, total shock- oct 2018, invasion of peri mets
Mom to 4 & 7 yrs kids (6 mo. & 3.5 yrs at diagnosis in June 2015)

User avatar
susie0915
Posts: 872
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Such a blow!

Postby susie0915 » Mon Oct 01, 2018 6:23 pm

I am so sorry. What happened? Your signature shows clear colonoscopy in May, and clean scope in September. Did you have some symptoms or a scan that showed a new tumor. I am praying you can get through this, there are many here that have recurrences that are NED. You have been through so much and hopefully treatment for this will not be too difficult for you. Again, I am so sorry, you and I were diagnosed around the same time, and recurrence is always on my mind.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change
11/18 CEA .6

Lydia666
Posts: 674
Joined: Sat Jun 06, 2015 6:50 pm
Location: Montreal, Canada

Re: Such a blow!

Postby Lydia666 » Tue Oct 02, 2018 6:07 am

After the colonoscopy i had liquid stool and i tookk immodium for a week which commpletely shut down my intestins. Have not gone to the bathroom since.i came to the emergency for constipation,they did a scan and saw cancer at the surgery site on the outside of the colon.
Oct 2012- thyroid cancer
June 19, 2015 Dx@39 yrs- CRC-T3N1M0
No vascular, no perineural invasion
Aug-Sept 2015- 28 rad/5FU
Oct 28, 2015- LAR- temp ileo, neg. nodes- 0/11
March 2016- 6 rounds Xeloda/positive CHEK2 mutation
July 2016- ileo reversal
August 2016- DCIS
Feb 24,2017- prophylactic double mastectomy
May 2018 - clean CT
Sept 2018-clean scope
Devastation, total shock- oct 2018, invasion of peri mets
Mom to 4 & 7 yrs kids (6 mo. & 3.5 yrs at diagnosis in June 2015)

NHMike
Posts: 1835
Joined: Fri Jul 21, 2017 3:43 am

Re: Such a blow!

Postby NHMike » Tue Oct 02, 2018 7:22 am

Lydia666 wrote:After the colonoscopy i had liquid stool and i tookk immodium for a week which commpletely shut down my intestins. Have not gone to the bathroom since.i came to the emergency for constipation,they did a scan and saw cancer at the surgery site on the outside of the colon.


I see that you have been through a lot of cancer stuff in your history and for it to come back a month later to be big enough to cause you discomfort is surprising. Can a surgeon just remove it?
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal

User avatar
susie0915
Posts: 872
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Such a blow!

Postby susie0915 » Tue Oct 02, 2018 7:57 am

Lydia666 wrote:After the colonoscopy i had liquid stool and i tookk immodium for a week which commpletely shut down my intestins. Have not gone to the bathroom since.i came to the emergency for constipation,they did a scan and saw cancer at the surgery site on the outside of the colon.


Omg. I am so sorry. Praying for you that this is contained and can be treated. Never secure in cancer free status, are we? Many on this board have had recurrences and have gone on to be NED for many many years.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change
11/18 CEA .6

rp1954
Posts: 1390
Joined: Mon Jun 13, 2011 1:13 am

Re: Such a blow!

Postby rp1954 » Tue Oct 02, 2018 1:40 pm

Have you had them check for MSI-H? You've had 3 brushes with different cancers and that may suggest MSI-H. If so, then you could focus on getting some kind of PD-1 inhibitor treatments, which have a pretty good batting average.
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC

kandj
Posts: 213
Joined: Sun Sep 27, 2015 11:29 am

Re: Such a blow!

Postby kandj » Wed Oct 03, 2018 11:32 am

Have you had DNA testing done for Lynch or other cancer genes? You have either had an incredibly bad run of luck or something else is going on to have 3 cancers and a recurrence (but not a disease spread). I would want testing done ASAP and look into immunotherapy drugs.
wife to DH, dx 8/15 stage IV @36
Told unresectable liver Mets
Primary resection and HAI pump placed Dec 2015 at MSKCC, FUDR started Dec 2015
Liver resection 5/19/2016 15-20 mets removed (surgeon lost count, but it hopeful he got it all!)
Recurrence 7/2017 4 Liver mets and one possible lung met
Radiation on liver Mets 12/17
Lung met 10/18
46 rounds of chemo 8/15-5/18

User avatar
CRguy
Posts: 9673
Joined: Sun Feb 10, 2008 6:00 pm

Re: Such a blow!

Postby CRguy » Wed Oct 03, 2018 12:46 pm

Lydia666 wrote:Thank you for any encouragement!


Sorry for the major sucknitude on the recent news
BUTT ...... keep pushing your docs HARD to get on this

Harmony with you on the Journey

CRguy
Caregiver x 3
Stage IV A rectal cancer/lung met
11 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

lpas
Posts: 1007
Joined: Wed Nov 19, 2014 11:11 pm

Re: Such a blow!

Postby lpas » Wed Oct 03, 2018 2:29 pm

Oh no, Lydia--I'm so, so sorry. :( You've just had so much to deal with over the past 5 years. Was hoping maybe we'd both be lucky enough to escape this. I've read that local recurrences have better survival stats than distant metastasis. There's an article at the link below that discusses this. And I agree that you definitely need to get your tumor tested for microsatellite instability, asap! From what I understand, those who are MSI-H have been seeing really good results with immunotherapy.

All that aside, I do believe there are supplements that can lengthen survival and improve your odds, if carefully targeted (things like nattokinase, IP-6, and anti-inflammatories have been particularly helpful for me). My naturopath has been a God-send in this area. It isn't inexpensive and I don't believe I'm out of the woods myself by a long shot, but I know what I take is having an impact because I can see it in my blood work. Please PM me if you'd like more info. Either way you are in my thoughts. Sending you all the positive vibes I can muster!

https://academic.oup.com/annonc/article/16/5/756/150213
11/14 Dx sigmoid CC @ 45yo
12/14 Colectomy + hysterectomy
Stage IIIB, T3N1bM0, 2/20 nodes, MSS, G2, KRAS(A146T), TP53, SMAD4, ERBB2, CEA 1.0
2/15-7/15 XELOX & Celebrex
3/16 Ovarian mass removed. Benign fibroid
9/16 clean scope
4/18 clean CT
Ongoing Celebrex, Tagamet & other carefully-targeted supplements
Post-chemo CEA 3.0, 2.5, 2.3, 2.0, 1.6, 1.3, 1.8, 2.1, 1.8, 2.0, 1.8, 1.9, 1.7, 1.5, 1.6, 1.5, 1.4, 1.4, 1.3, 1.3, 1.6, 1.6, 1.3, 1.4, 1.6, 2.2, 2.4, 2.1
Mom to a 4 & 6yo

DarknessEmbraced
Posts: 3175
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Such a blow!

Postby DarknessEmbraced » Sun Oct 07, 2018 7:39 am

I'm so sorry your cancer came back!*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


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