The Colon Club

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

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?

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

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.

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

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

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

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

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/

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.

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!

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

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.

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

Glad the surgery went well. Hope the recovery is quick, and you stay free and healthy.