It's baack!

[MikeManess]

I was diagnosed with Colon Cancer in early 2016. After two surgeries, two radiation treatments, one recurrence, and 2.5 years of chemo and I was NED. I've been checked yearly with CT scans and nothing seen. The scan this August would have been my 5 year NED anniversary. Had I passed, the doctor would have declared me as cured - even though we all know this isn't correct.

Anyway, I had my CT scan this past Wednesday and I got the result the next day. "innumerable bilobar hepatic metastatic lesions" "likely peritoneal carcinomatosis" "cavernous transformation at the hepatic hilum" .. and those are just the highlights. In just a year I've become eaten up by colon cancer. Honestly, I don't see a path out of this. It's just too much to treat, IMO, and unless a miracle suddenly happens, I think I'm toast in a few months - and I'm fresh out of miracles. Anyone have a miracle that I can borrow?

Of course, my wife is a puddle of goo right now. She's an RN and is more familiar with the terms than I am. Cancer is always more emotionally upsetting for your loved ones than it is for yourself - I went through this many years ago when my then wife had Ovarian Cancer.

The absolutely insane schedulers at UTSW scheduled my meeting with my oncologist 9 days after my CT scan, so I have yet to hear his opinion on this. From my non-medical background's opinion, I think I'm gonna tumble down the rabbit hole.

[Markdale]

Sorry to hear it mate. I’m in a similar position to you. Hopefully chemo can clear the spots up.

[roadrunner]

Mike: I am sorry to hear that you got this news. Can’t tell from your signature exactly what you’ve had in terms of systemic therapy, but maybe there’s still something available that will stop this progression. I don’t know much about the liver, but I assume you’re aware of any available immunotherapy, checkpoint inhibitor, and HAI pump-type options. If not, those may be points to discuss with your oncologist.

Mark: Sorry to hear your news as well. FOLFIRI is generally pretty useful for pulmonary mets, and there are some really great response stories, a couple on this board if I recall right. If you’ve not had it before, it is at least pretty tolerable compared to FOLFOX. That was my experience, in any case. Worked to reduce my lung met, too. I did dodge the diarrhea, for what that’s worth (the nurses told me that men have less diarrhea than women on FOLFIRI). I hope you have a strong response!

[Green Tea]

Mike -

I'm really very sorry to hear of your recent unexpected recurrence. I agree with roadrunner that it could be worthwhile exploring new treatment procedures or regimens that you haven't had before.

To know what kinds of regimens might work you would need to know your tumor's MSI-status (MSS or MSI-H) as well as the results of any biomarker tests for mutations in the KRAS/NRAS/BRAF/HER-2, etc, oncogenes.

Do you have this information in your files?

Also. since you had a right-sided colon cancer you would need to be sure that any new regimen you try is suitable for right-sided tumor genomic profiles, since your tumor and its metastases might require a special type of immunotherapy. So far you have had only standard chemo regimens or targeted therapy regimens with Avastin, but you haven't had any of the new immunotherapies. I think you need to discuss which kind of immunotherapy (if any) would likely work in your situation with your particular right-sided tumor genetics.

Here is an article on "Sidedness" that you can read and discuss with your oncologist.

Treatment
Right-sided colon cancer is more commonly associated with MSI-High tumors, which have a specific genetic change affecting the cell repair process that can lead to cancer. Right-sided tumors may respond better to immunotherapy compared to left-sided tumors.

Reference:
Sidedness: What Side Is Your Cancer On? June 2, 2023
https://fightcolorectalcancer.org/blog/sidedness-what-side-is-your-cancer-on/

Also, here is information on the range of FDA approved drugs for colorectal cancer as of 2024, and restrictions on their use. You can ask your oncologist if there are any drugs on this list that could halt the currrent progression.

For reference, here are the main chemo drugs and chemo drug-combinations in use right now, along with their dates of original FDA approval :

Drugs used in colorectal cancer
1962 5-FU (fluorouracil Injection) - no restrictions
1998 Xeloda (capecitabine) - no restrictions
2000 Camptosar (irinotecan hydrochloride) - no restrictions
2004 Avastin (bevacizumab) - mCRC 1st line+
2004 Eloxatin (oxaliplatin) - no restrictions
2004 Erbitux (cetuximab) - mCRC 1st line+, KRAS wild type only
2006 Vectibix (panitumumab) - mCRC 1st line+, KRAS wild type only
2012 Keytruda (Pembrolizumab) - mCRC 1st line, MSI-H only
2012 Zaltrap (ziv-Aflibercept) - mCRC 2nd line,
2012 Stivarga (regorafenib) - no restrictions
2014 Cyramza (ramucirumab) - mCRC 2nd line
2015 Lonsurf (trifluridine and tipiracil hydrochloride) - no restrictions
2017 Opdivo (nivolumab) - mCRC 1st line+, MSI-H only
2018 Yervoy (ipilimumab) - mCRC 1st line+, MSI-H only
2019 Zirabev (bevacizumab.alt) - mCRC 1st line+
2020 Braftovi (encorafenib) - mCRC, BRAF V600E only
2023 Tukysa (tucatinib) - mCRC 2nd line, RAS wild-type HER2-positive
2023 Fruzaqla (fruquintinib) - mCRC 2nd line

Drug Combinations Used in Rectal Cancer
FOLFIRI
FOLFOXIRI
FOLFOXIRI+AVASTIN
FOLFIRI+AVASTIN
FOLFIRI+ERBITUX
FOLFIRI+VECTIBIX
FOLFOX
FOLFOX+AVASTIN
5FU+LV
XELIRI
XELOX(CAPEOX)
==================================
FDA-APPROVED COLORECTAL CANCER TREATMENTS, May 2024
https://www.empr.com/wp-content/uploads/sites/7/2024/05/FDA-Approved-Colorectal-Cancer-Treatments-r0524.pdf

[utahgal7]

Wow, this is really tough news. I agree with the previous comments about chemo. FOLFIRI might be able to shrink your mets enough where you may be a candidate for HIPEC and/or Cytoreductive surgery. A CRC friend of mine that was in a similar situation to yours - mets to liver and peritoneum was able to get HIPEC done at UC San Diego. Her surgeon, Dr. Andrew Lowy, specializes in complex GI cancer that has spread to the peritoneum. You may want to reach out to Dr. Lowy's office.

Best of luck to you,

Paige

[MikeManess]

First, thanks for the responses. I started out with FOLFOX until my neoropathy got too bad. My oncologist tried to get me to take more, but I refused. 7 years later and my feet are all but totally numb, and my fingers are a bit numb and tingly. After that, we went to FOLFIRI. I tolerated that very well, but I think I had so much FOLFIRI (2+ years) that I might have become immune to it. In any case, I had initial colon resection, then liver surgery to remove some small spots seen on an MRI. About a year and a half later, it came back in the liver, which was treated with targeted radiation. I've been cancer-free ever since. My oncologist had me on MRI/CT scans every 3 months for a while, then went to every 6 months. He then retired. My new oncologist stopped the MRI, and went with CT scans with IV contrast only. No barium - and every year instead of every year. Oh, and no blood tests.

Fast forward to August 2023. A 'portal vein thrombosis' was spotted in my liver, so the new oncologist gave me Xalreto (blood thinner) to remove the blood clot. No followup scan, nothing. For my August 2024 scans, I finally had a CT scan with barium, and blood tests. My CEA level was through the roof - it went from my normal 6.5 to 80. My CT scan found innumerable tumors in my liver, plus several portal vein thrombosis spots. It appears to have spread to my peritoneum. Basically, the oncologist is to blame here, as well as me for not standing up to him.

Adding insult to injury, my appt with the oncologist is 12 days after I got the scan results - I'll meet with him this Tuesday via Telehealth.

Needless to say, while I'll listen to him, I will also check out some major colon cancer centers - MD Anderson, Mayo Clinic, Sloane-Kettering among others. Might not improve my odds, but my odds are not very good to begin with. With it having spread to my peritoneum, my survival chance is approaching zero.

As with most people in this situation, my wife is having a difficult time. She's an RN in her home country (Philippines) and understands the road I'm going to have to take. The main issues for me is do I have enough undiseased liver to have a resection? Do I have the proper mutation for immunotherapy? Will Folfiri still work, or did I become immune to it? Guess I'll find out starting Tuesday.

[jts]

Hi Mike,
I'm sorry to hear about your recurrence. That is really inexcusable of the oncologist to not even track your CEA, given your history of recurrences.

As someone who is about 4 years NED, this is really my fear. I find I have to fight against the temptation of thinking my life is normal. My oncologist has been a good sport about ordering scans when I ask for them. But I find I do have to ask. Since my only recurrence was in my lungs, and lung mets grow slowly, I have fallen back to 6 month intervals, unless there is something worthy of follow-up examination.

Why do they think you have peritoneal mets? If that is not definitively diagnosed, it makes a big difference. Is the suspicion that it spread from your liver? It is so long since your primary tumor was removed, and peritoneal disease supposedly moves fast; it seems inconceivable that those mets could have been present but undetectable for so long. The radiologists often flag things that need follow-up examination. But that is not a definite diagnosis.

I hope you find someone wiling to aggressively treat this, if that is what you want.

Thanks,
jts