Peri mets, Stage IV --- Need advice

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AJQ
Posts: 21
Joined: Sun Jul 16, 2017 9:29 am
Location: CA

Peri mets, Stage IV --- Need advice

Postby AJQ » Thu Oct 12, 2017 9:53 pm

Hello friends,

Today I received the worst news from my doc. After 3 months being on XELOX regime, my aggressive Appendix /Cecum cancer spread to the Peritoneum with small met in Omentum, One Lymph node, 2 in Peri and one close to the pelvis. Onc said I am terminal and now can be on Folfiri + Avastin for the little time I have left. See my signature below.

I am going to try Appendix specialists and see if HIPEC is for me. I feel OK so its very hard for me to comprehend this fact and want to fight this with hope.

I am looking for advice and any one opted for treatments other than being told " you have less than a year".

Thank you
AJ
52 yr, stage III adenocarcinoma of appendix(PD) and Cecum
5/16/17: LAP Appendix Removal
5/22/17: Diagnosed. T4 poorly differentiated with LVI
6/21/17: LAP RHC: 1/21 positive Lymph. T4N1M0
CEA 6/17: 1.0, 7/17: 1.0, 8/17: 1.0, 9/17: 2.0, 9/28: 2.0, 10/12: 1
7/21/17: baseline CT
7/27/17: started Xelox (Capox) cycles
10/09/17: CT scan. Multiple Peri and Pelvis mets
11/1/17: CRS/HIPEC. All nodules removed- low PCI NED :D

Sara!!!!
Posts: 17
Joined: Wed Jul 19, 2017 9:57 am

Re: Peri mets, Stage IV --- Need advice

Postby Sara!!!! » Fri Oct 13, 2017 1:08 am

Hey AJ. My mom has stage 4 colon cancer with mets to liver. Her recent scan shows omental thickening which most probably are mets. She's also been having right sided pain after ileostomy reversal. Hopefully those are just adhesions. But very worried now :( we are looking into hipec options. But most surgeons are refusing cuz of liver mets. U can be a candidate for hipec. Have you researched that?

ams5796
Posts: 2272
Joined: Fri Feb 06, 2009 10:07 am

Re: Peri mets, Stage IV --- Need advice

Postby ams5796 » Fri Oct 13, 2017 5:57 am

You can fight this. I've never had HIPEC, but I know that there is lots of information on here about it. I think there's an ongoing thread right now about it. Also, use the search option and you'll find lots. The first thing I would do would be to get to a major cancer center such as Memorial Sloan Kettering or MD Anderson. I know MD Anderson does HIPEC.

Best of luck to you. We're here for you.


Ann
Stage 3C (or 4?) Rectal Cancer 01/07
2/10 lung mets
3/11 VATS
6/11 VATS
7/13 lung met
2/14 SBRT
NED 8/14
5/17 scan and MRI found treated spine met

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Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Re: Peri mets, Stage IV --- Need advice

Postby Maia » Fri Oct 13, 2017 8:01 am

AJQ, so sorry to hear these news. Do you know anything about the mutations/ genetic characteristics of the tumour? Are you in California? You have there many main cancer centers, they surely can help you to get genetic profile and maybe looking for an immunotherapy trial.

AJQ
Posts: 21
Joined: Sun Jul 16, 2017 9:29 am
Location: CA

Re: Peri mets, Stage IV --- Need advice

Postby AJQ » Fri Oct 13, 2017 12:17 pm

Sara!!!! wrote:Hey AJ. My mom has stage 4 colon cancer with mets to liver. Her recent scan shows omental thickening which most probably are mets. She's also been having right sided pain after ileostomy reversal. Hopefully those are just adhesions. But very worried now :( we are looking into hipec options. But most surgeons are refusing cuz of liver mets. U can be a candidate for hipec. Have you researched that?


Yes I am going next week Sara. Hoping that HIPEC remains an option for me

AJ
52 yr, stage III adenocarcinoma of appendix(PD) and Cecum
5/16/17: LAP Appendix Removal
5/22/17: Diagnosed. T4 poorly differentiated with LVI
6/21/17: LAP RHC: 1/21 positive Lymph. T4N1M0
CEA 6/17: 1.0, 7/17: 1.0, 8/17: 1.0, 9/17: 2.0, 9/28: 2.0, 10/12: 1
7/21/17: baseline CT
7/27/17: started Xelox (Capox) cycles
10/09/17: CT scan. Multiple Peri and Pelvis mets
11/1/17: CRS/HIPEC. All nodules removed- low PCI NED :D

AJQ
Posts: 21
Joined: Sun Jul 16, 2017 9:29 am
Location: CA

Re: Peri mets, Stage IV --- Need advice

Postby AJQ » Sat Oct 14, 2017 9:25 am

Maia wrote:AJQ, so sorry to hear these news. Do you know anything about the mutations/ genetic characteristics of the tumour? Are you in California? You have there many main cancer centers, they surely can help you to get genetic profile and maybe looking for an immunotherapy trial.


Maia: yes I am in CA. They are going to do mutations and genetic testing to see.

AJ
52 yr, stage III adenocarcinoma of appendix(PD) and Cecum
5/16/17: LAP Appendix Removal
5/22/17: Diagnosed. T4 poorly differentiated with LVI
6/21/17: LAP RHC: 1/21 positive Lymph. T4N1M0
CEA 6/17: 1.0, 7/17: 1.0, 8/17: 1.0, 9/17: 2.0, 9/28: 2.0, 10/12: 1
7/21/17: baseline CT
7/27/17: started Xelox (Capox) cycles
10/09/17: CT scan. Multiple Peri and Pelvis mets
11/1/17: CRS/HIPEC. All nodules removed- low PCI NED :D

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bitchslapped
Posts: 1360
Joined: Tue Sep 09, 2014 3:23 pm
Location: PNW/USA

Re: Peri mets, Stage IV --- Need advice

Postby bitchslapped » Sat Oct 14, 2017 5:12 pm

AJ, It's always devastating to receive this kind of news...well I was on the caregiver end of it. I'm not new on the scene of CC dx for my loved ones, but my BFF just dx'd w/appendix cancer which I posted about the other day.

HIPEC appears to be the recommendation, but too soon yet as pathology not back.

So glad you are pursuing other avenues. Hope is powerful; hang onto it.

Best Wishes,
BS
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07 fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

DarknessEmbraced
Posts: 2849
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Peri mets, Stage IV --- Need advice

Postby DarknessEmbraced » Sat Oct 14, 2017 5:28 pm

I'm sorry it wasn't better news!*hugs* I'm glad you're going to try an appendix specialist.*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

elruso
Posts: 1
Joined: Sat Oct 14, 2017 5:23 pm

Re: Peri mets, Stage IV --- Need advice

Postby elruso » Sat Oct 14, 2017 6:34 pm

I'm brand new here and joined to see what other people are doing to fight their cancer. I have CRC with metastasis to the liver and I feel better by studying and using chemotherapeutic phytochemicals, pharmaceuticals and food. My advice is to take an aspirin, have a cup of green tea, eat some walnuts and read some new studies about these things. I search, for example " NIH walnut CSC CRC tumor human". I hope this helps and you do well!

Walnut Phenolic Extract and Its Bioactive Compounds Suppress Colon Cancer Cell Growth by Regulating Colon Cancer Stemness https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4963915/

New frontiers in the treatment of colorectal cancer: Autophagy and the unfolded protein response as promising targets
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5446063/

Epigallocatechin-3-gallate targets cancer stem-like cells and enhances 5-fluorouracil chemosensitivity in colorectal cancer
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4941304/
1/16 stage IV CRC Liver Mets
Capecitabine Radiation
5/16 distal colon resection
11/16 liver resection
NED
6/17 2nd liver resection
NED

plastikos
Posts: 273
Joined: Wed Jan 14, 2015 6:09 am

Re: Peri mets, Stage IV --- Need advice

Postby plastikos » Sat Oct 14, 2017 9:19 pm

Hi. Sorry to hear about this. I know it’s jarring but don’t lose hope. You still have options. First get to a good cancer center like others have already mentioned. If you want to go aggressive explore HIPEC. You may also have your tumor tested for MSI status and try immunotherapy. Or even combine both. Good luck.
Diagnosed St. IV Colon CA @ 37, male, Kras wild type, MSI-high (2014)
11/2014 Right Hemicolectomy + Liver Resection
12/2014 - 6/2015 FOLFOX + Cetuximab
10/2015 - Recurrence liver
Liver resection 10/2015
FOLFIRI 11/2015 - 5/2016
Recurrence liver, nodes 11/2016
Pembrolizumab 12/2016 -> pseudoprogression (?), biliary obstruction -> biliary stenting
Chemo 4x: most mets inactive and smaller on PET-CT
March 2017 - Back on Pembrolizumab
Sept 2017 - SIRT

Writingdoc2
Posts: 5
Joined: Mon Jul 25, 2016 8:41 pm

Re: Peri mets, Stage IV --- Need advice

Postby Writingdoc2 » Mon Nov 06, 2017 9:38 pm

AJ, If you're willing to travel for surgery, I would highly recommend calling Dr. Paul Sugarbaker's office (Google Sugarbaker Oncology) in DC. He will review your scans/records from afar and if he thinks you're a candidate, you will fly out for a consultation and then surgery. He's a pioneer in performing HIPEC surgery with patients with peri mets from appendicial and colon cancer. He operated on me two weeks ago, and I found him to be aggressive, thorough, and truly optimistic. I hope to be released from the hospital tomorrow!

AJQ
Posts: 21
Joined: Sun Jul 16, 2017 9:29 am
Location: CA

Re: Peri mets, Stage IV --- Need advice

Postby AJQ » Tue Nov 21, 2017 12:16 am

Thank you.

I had my HIPEC 3 weeks ago by Dr. Lowy. So far so good and he was able to all the nodules out.

AJ
52 yr, stage III adenocarcinoma of appendix(PD) and Cecum
5/16/17: LAP Appendix Removal
5/22/17: Diagnosed. T4 poorly differentiated with LVI
6/21/17: LAP RHC: 1/21 positive Lymph. T4N1M0
CEA 6/17: 1.0, 7/17: 1.0, 8/17: 1.0, 9/17: 2.0, 9/28: 2.0, 10/12: 1
7/21/17: baseline CT
7/27/17: started Xelox (Capox) cycles
10/09/17: CT scan. Multiple Peri and Pelvis mets
11/1/17: CRS/HIPEC. All nodules removed- low PCI NED :D

tater
Posts: 31
Joined: Wed Jul 19, 2017 5:53 pm

Re: Peri mets, Stage IV --- Need advice

Postby tater » Tue Nov 21, 2017 10:38 am

AJQ wrote:Thank you.

I had my HIPEC 3 weeks ago by Dr. Lowy. So far so good and he was able to all the nodules out.

AJ



Sounds like surgery went well that is good news.
DH to 38 wife w/kids
Stage 3C DX 3/3/17 CEA 29
5-fu and radiation ended May 17, 17
Stage 4 Liver mets 3(5mm-6mm) and iliac node July 17, 17
FOLFOX + Avistan July 18 CEA 2.3

User avatar
bitchslapped
Posts: 1360
Joined: Tue Sep 09, 2014 3:23 pm
Location: PNW/USA

Re: Peri mets, Stage IV --- Need advice

Postby bitchslapped » Tue Nov 21, 2017 1:32 pm

Was wondering how your consult went, AJ :) That was quick. They appear to be quick & organized there @ UCSD from initial contact to consult to scheduling surgery. BFF is scheduled there, also w/Dr. Lowy, next wk for HIPEC (also appendix cancer).
Glad you were a candidate & doing fine! Curious as to how long your surgery was. Estimate for my friend, 5 hrs.
I hope you come back & share some of your experience for our members here when you feel up to it. I plan to share as much as I can 2nd hand (easier for me as I'm not the patient).
Kudos to you for taking the bull by the horns in self advocacy.

Best Wishes in healing,
BS
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07 fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

fumaros
Posts: 218
Joined: Sat Jul 02, 2016 10:26 pm
Location: Syracuse, NY
Contact:

Re: Peri mets, Stage IV --- Need advice

Postby fumaros » Tue Nov 21, 2017 3:35 pm

Glad the surgery went well. Hope the recovery is quick, and you stay free and healthy.
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
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
FOLFOX began 6/24/16 - 11/25/16
10 round FOLFOX, 2 round 5-FU & Leucovorin
MRI & CT 8/16 - NED, CT 12/16 - 10/17 - NED


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