Such a blow!

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Lydia666
Posts: 676
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
August 2016- DCIS and decided post prophylactic double mastectomy
May 2018 - clean CT
Sept 2018-clean scope
Devastation, total shock- oct 2018, invasion of peri mets
Dec 20 - 2 round of folfox
Mom to 4 & 7 yrs kids - at least i brought them to this level of independence.

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susie0915
Posts: 945
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 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5

Lydia666
Posts: 676
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
August 2016- DCIS and decided post prophylactic double mastectomy
May 2018 - clean CT
Sept 2018-clean scope
Devastation, total shock- oct 2018, invasion of peri mets
Dec 20 - 2 round of folfox
Mom to 4 & 7 yrs kids - at least i brought them to this level of independence.

NHMike
Posts: 2555
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; 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, 2/12 1.2
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
2/19: Clean CT

User avatar
susie0915
Posts: 945
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 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5

rp1954
Posts: 1853
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 researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper chemo to almost nothing mid 2018, IV C-->2021. Now supplements

kandj
Posts: 314
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, 12+ liver Mets
HAI placed 12/15
Liver resect 5/19/2016 15-20 mets (surgeon lost count)
Liver Recurrence 7/2017-radiation
Lung met 10/18 VATS
lung/adrenal gland recurrence 11/19
Adrenal ablation 2/20 VATS 3/20
Radiation: 9/20 adrenal gland, 2/21 pancreatic node
9/2021 liver, 4/22 esophageal node
7/2023 proton therapy: liver
140+ rounds of chemo and counting
Chest nodes, lung nodules, and esophageal nodes currently.

User avatar
CRguy
Posts: 10473
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 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

lpas
Posts: 1010
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 & celecoxib
2/19 clean scope
11/19 clean CT
Ongoing cimetidine & other targeted supplements
Mom to a 6 & 8yo

DarknessEmbraced
Posts: 3816
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
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)


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