Anyone else with signet cell or muincous cancer?

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Scaredoutofmind
Posts: 60
Joined: Fri Mar 13, 2015 7:24 pm
Facebook Username: Ilene Mastrangelo

Anyone else with signet cell or muincous cancer?

Postby Scaredoutofmind » Fri Apr 17, 2015 2:20 pm

What is your treatment plan and is it working? Everything I read is terrifying.

lpas
Posts: 1010
Joined: Wed Nov 19, 2014 11:11 pm

Re: Anyone else with signet cell or muincous cancer?

Postby lpas » Fri Apr 17, 2015 2:26 pm

FYI, here's a post from a long-term survivor of signet cell cancer. There are success stories out there!

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=48957&p=372556#p372556
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

jvaime21
Posts: 308
Joined: Sat Sep 14, 2013 5:35 am
Facebook Username: alpha21_2003

Re: Anyone else with signet cell or muincous cancer?

Postby jvaime21 » Fri Apr 17, 2015 11:52 pm

Hi, my husband is signet ring cell adenocarcinoma . Mucunious sigmoid. Sad to say it is a A very difficult to treat it is advance cancer.in the begenning it is stage 3 no invasion.. The treatment is very aggressively . 28x of radiation + XELODA, surgery .. Temporary ileostomy .. 6 months chemo XELODA + OXIPLATIN .. 2 weeks -1 week off then OXI- so 3 weeks circle., then reversal of ileo.. But he overcome it.. The difficult time is after the reversal ..
But it is depends of what you have If it is poor differentiated or moderate.. And what kind.

After one year of treatment .. Recurrence .
Look at my signature ::
The good news now is that he is still alive ., we are told of maybe 6 months to one year.. .. Difficult road but slowly and he is now enjoying time with our son .. Our son reminded him to push more chemo to go.
Any question just PM me.

Good luck ..
Retchel
wife of Stg 4 SRC
Diag.'12-2013(rd+Xeloda+oxi)
04/16/14 Clear CT-
8/25/14Kidney blockd nepro.
Rec. lung 1 enlrg. Abdomen
Inoperable/incurable /Chemo for life
11/21/14 Xeloda+Irinetocan 6x
hoping for a bright sunny day

Laurettas
Posts: 1606
Joined: Tue Jun 21, 2011 9:49 pm

Re: Anyone else with signet cell or muincous cancer?

Postby Laurettas » Sat Apr 18, 2015 9:05 am

My husband had SRC colon cancer. He was advanced stage 4 at diagnosis. Yes, when one reads about this disease, it is very frightening. The prognosis is dismal but there are a few who have beat the odds, particularly at stage 3 or lower. I will share a few things that I learned from my husband's experience. As far as chemo goes, the cancer responded very well to both Folfox and Folfiri. Within 6 months, his peritoneal mets had disappeared, never to return and the remaining cancer which was located in his lymph system had regressed to the point of being inactive on his PET scan. Unfortunately it was decided to put him on Erbitux alone without checking his cancer for all of the mutations that make Erbitux ineffective. Later testing showed that his cancer was BRAF mutant, which is one of the mutations that Erbitux does not work for. So, I would make sure that extensive testing is done on the tumor to see as best as possible what its profile is like, because some SRC is more similar to melanoma than it is regular colon cancer which could open up the possibility of different drugs. Also, this cancer grows VERY rapidly. I would beg for scans at least every two months. When my husband was on Erbitux alone, his cancer went from being inactive with his lymph tumors being shrunk back to normal size to having extensive new growth throughout his body in less than 4 months. Also, for him CEA was a very good indicator. His CEA numbers were not high but when the numbers decreased, his cancer was regressing and as soon as his numbers began climbing, his cancer was growing. I hope this information is helpful for you and if I can help in any way, please feel free to contact me.
DH 58 4/11 st 4 SRC CC
Lymph, peri, lung
4/11 colon res
5-10/11 FLFX, Av, FLFRI, Erb
11/11 5FU Erb
1/12 PET 2.4 Max act.
1/12 Erb
5/12 CT ext. new mets
5/12 Xlri
7/12 bad CT
8/12 5FU solo
8/12 brain met
9/12 stop tx
11/4/12 finished race,at peace

Dori W
Posts: 34
Joined: Mon Aug 25, 2014 2:30 pm
Facebook Username: Dori Woodhouse

Re: Anyone else with signet cell or muincous cancer?

Postby Dori W » Mon Apr 20, 2015 11:56 am

I was diagnosed with stage 3C SRC colon cancer in 2008 and was very fortunate to never have a recurrence. I had fourteen lymph nodes with cancer in them, so my situation was not good. My oncologist said that the treatment for SRC is the same as for any other colon cancer. Having said that, I did push successfully for a more aggressive scanning schedule. A lot depends on what your insurance is willing to pay for.

I know the information available on the internet about this cancer is terrifying. If possible, I would try to back off from excessive Googling for information about it. I was unable to stop myself, and I think it only hurt me by increasing stress even further.

I'm so sorry you are going through this.

Take care and best wishes,
Dori
Diagnosed stage 3C signet ring colon cancer in May, 2008
14 out of 18 positive lymph nodes
Final treatment in November, 2008
NED ever since
I used to have an account under "Dori," but I've lost access to it.
You can view my old posts here: search.php?author_id=1446&sr=posts

Swessel
Posts: 1
Joined: Sun Oct 30, 2016 3:43 pm

Re: Anyone else with signet cell or muincous cancer?

Postby Swessel » Sun Oct 30, 2016 4:12 pm

My mom was diagnosed with signet ring cell in Dec 2012. Surgery in Feb 2013 followed by 6 months of chemo. NED Aug 2013 until July 2016. Mets to stomach, currently on chemo. Only 1 spot, hoping for HIPEC in November. I know this is an aggressive cancer but she has atayed positive her entire journey and other than the chemo she feels great. Still working full time and enjoying life. She is 62 yrs old. I usually just lurk on these boards but joined today to tell her story and hopefully give some hope to others with this diagnosis. When I first searched signet ring cell I was scared to death! But there is HOPE!!!! We have an appointment next week with the surgeon to discuss HIPEC. So keep fighting and stay positive!!! Praying for all!!

Swirdfish
Posts: 290
Joined: Sun Jun 19, 2016 3:57 am

Re: Anyone else with signet cell or muincous cancer?

Postby Swirdfish » Mon Oct 31, 2016 2:14 am

Mine was mucunious and a grade 3. It had slight or minimal shrinkage during chemoradiation.
06/2016 Went in for colonoscopy came out with a tumor. Age 35
12cm from verge at junction. Rectal cancer.
Clinical stage T3 NO MO
Temp illestomy
Completed 5FU and Radiation
LAR surgery planned 13 Oct 2016
Completed ULAR surgery 11-10-2016.
0/22 nodes
pT3 N0 M0 R1
Stage 2A

Pathology reviewed and changed
ypT3 N0 M0 R0

Started folfox 21-11-2016
5-4-17 NED
Reversal 12-4-17

fumaros
Posts: 273
Joined: Sat Jul 02, 2016 10:26 pm
Location: Syracuse, NY
Contact:

Re: Anyone else with signet cell or muincous cancer?

Postby fumaros » Mon Oct 31, 2016 5:40 am

Hi,

mine was diagnosed as SRC as well when i went to MSKCC , it was shocking and horrible news in addition to everything else. I was told there that for stage 3 the treatment was the same as for other CC - 12 rounds of FOLFOX, the onc did recommend monitoring with MRIs in addition to the standard CT scans. Anyway, it's scary, but you have to push past the fear and stay optimistic.
Diagnosed 4/8/16, age 29
Colectomy 4/20/16
Stage III, T4bN1 Tumor 7x6.5x2. Muscinous Adenocarcinoma with SRC features
2/16 lymph nodes
Stage IV, Peri mets 5/2019
CEA 4/14/16 - 16.8
CEA 6/2/16 - 1.9
CEA 6/17/16 - 0.87, 7/16 - 1.33, 12/16 - 1.14, 4/17 - 0.6, 7/17 - 0.5, 10/17 - 0.9, 3/19 -5.8, 4/19 -10
FOLFOX began 6/24/16 - 11/25/16, FOLFIRI - 5/10/19
10 round FOLFOX, 2 round 5-FU & Leucovorin, 1 round FOLFIRI
MRI & CT 8/16 - NED, CT 12/16 - 10/17 - NED


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