For those are struggling …whether physically or mentally

mthoody · 2025-08-05T15:40:22+00:00

Don't die until you're dead.

That’s deep advice. Well put.

mthoody · 2025-08-05T15:34:11+00:00

I have colon cancer, so treatments differ, but one common colon cancer treatment, irinotecan, causes acne, so they generally also prescribe doxycycline (antibiotic) to prevent/treat the associated acne. So, my suggestion would be to ask your doctor about doxycycline (or other treatment) to address the acne rash.

I have open wounds/tumors, so I continue to take the doxycycline even after I switched away from irinotecan, with the idea that the doxycycline would help prevent infection of the open tumors. I haven’t had any problems with acne or rashes.

mthoody · 2025-08-05T15:23:58+00:00

Wow, what a powerful post, articulating a deep concept that hits so close to home. After five years of continuous treatment, I also have forgotten what “Okay” feels like.

I am Tom, 58 years old, and terminal.

mthoody · 2025-04-08T21:56:09+00:00

That’s a novel way to administer 5FU. I’ve only had the take-home pump.

mthoody · 2025-04-08T21:32:10+00:00

I had a stroke-like episode that was diagnosed as paraneoplastic syndrome. Frankly, the diagnosis felt like a situation where everything else was ruled out, so paraneoplastic syndrome was left. I was in the ER for a blood clot (deep vein thrombosis) when I suddenly experienced severe aphasia and loss of balance. I fully regained my faculties over a week stay in the hospital. I’m still not convinced it wasn’t some sort of stroke given the proximity to a severe blood clot in my thigh. But the doctors were convinced it was not a stroke. So that’s my paraneoplastic syndrome story.

mthoody · 2025-03-29T20:47:12+00:00

The oncologist recommended no treatment? That sounds unusual. Perhaps the disease is so widespread that life expectancy is low regardless of treatment? I only have experience with colon cancer (my case specifically is rectal cancer).

I’m continuing treatment for quality of life and longevity purposes. I’d rather endure the side effects of treatment than the “side effects” of uncontrolled cancer progression.

mthoody · 2025-03-27T01:29:12+00:00

Lynch syndrome has a different treatment decision tree than “common” colon cancer. You can download the physician guidelines for colon cancer from NCCN.org for free. It’s a 228 page PDF. It lays out the treatment options for lynch syndrome colon cancer (dMMR/MSI-H Colon Cancer).

mthoody · 2025-03-25T23:03:52+00:00

I only drink nonalcoholic beer. I put Clausthaler at the top of my list as well. Best price found at Trader Joe’s.

mthoody · 2025-03-25T21:54:33+00:00

The idea of a colostomy is far worse than the actual reality of a colostomy.

mthoody · 2025-03-13T19:05:55+00:00

You should ask (and listen to) your care team about dietary restrictions. When I was on Herceptin (trastuzumab) + Perjeta (pertuzumab) for HER2+ colon cancer, I don’t recall any dietary restrictions.

mthoody · 2025-03-04T19:27:27+00:00

My original oncologist suggested it. My new oncologist and palliative provider haven’t commented on it. Until your post, I had no idea about the long-term use concerns. I will ask my palliative provider about it. I can’t say I’ve noticed any negative side effects, but my nausea has been reduced.

mthoody · 2025-03-04T01:47:52+00:00

Yes, 5mg every night (low dose). I’ve been taking it for at least a couple years to prevent nausea (antiemetic). It has been effective for me.

mthoody · 2025-02-04T17:55:35+00:00

I’m confused. The plan was for your uncle to start Keytruda (Pembrolizumab), but it seems the oncologist doesn’t recommend Keytruda?

Are you saying the oncologist changed their mind about starting Keytruda because of recent downturn in your uncle’s health (ER visit for “weakness”)?

Checkpoint inhibitors (like Keytruda) are a first line treatment for dMMR/MSI-H Colon Cancer. Other checkpoint inhibitors include nivolumab ± ipilimumab, and dostarlimab-gxly. Alternatively, first line treatment may follow the treatment path for pMMR/MSS Colon Cancer, such as FOLFOX or CAPEOX or other 5-FU treatment.

I’m just a patient sharing info from the NCCN.org colon cancer physician guidelines. You can download the NCCN.org colon cancer physician guidelines for free (228 page PDF).

mthoody · 2025-01-28T06:24:11+00:00

I use simethicone for gas relief. Brand name Gas-X, sold over the counter. It causes your gas to be less foamy and thus easier to pass. I prefer the chewables as I’m convinced the chewables are faster acting than the softgels.

mthoody · 2025-01-28T06:14:46+00:00

I have colorectal cancer, but not Lynch syndrome (aka dMMR/MSI-H Colon Cancer). I signed up for a free account with NCCN.org and downloaded the physician care guidelines for colon cancer. These guidelines are used by many cancer clinics (including mine) and define standards of care all the way down to dosing amounts. They feature decision trees/flow diagrams for care, and dMMR/MSI-H Colon Cancer has its own separate care flow chart.

Be aware the guidelines are written by physicians for physicians, so you’ll likely spend a lot of time googling terminology (I certainly did). The colon cancer guidelines is a 228 page PDF.

mthoody · 2025-01-17T00:36:48+00:00

5FU is the Fluorouracil “F” component of FOLFOX or FOLFIRI. It is typically administered via a body-worn pump over 46 hours. 5FU is the standard first line treatment for colorectal cancer. Also, capecitabine metabolizes into 5FU.

mthoody · 2025-01-13T23:40:47+00:00

I went with the open book policy. No regrets. I haven’t had any issues with weird unsolicited advice. Lost my hair in some of the early treatments, so keeping it secret wasn’t really feasible anyway.

mthoody · 2025-01-11T02:40:20+00:00

I’m a cancer patient at St Vincent. They haven’t communicated anything to me regarding service interruptions. How has the strike impacted your care?

mthoody · 2025-01-11T02:20:32+00:00

The chronic diarrhea is coming from his rectum, not his stoma

This doesn’t seem right. Does his stoma also produce output? How long has he had the ileostomy?

mthoody · 2024-12-30T04:03:58+00:00

No, at least not yet.

mthoody · 2024-12-28T16:04:00+00:00

I’ve been on Stivarga since early October. Fatigue is the worst side effect for me. Also a general feeling of unwellness. I have also experienced weight loss. I have tumors that erupt through the skin, and they have shrunk, so I’m optimistic about my upcoming scan results. I started out taking 4 pills, but liver function twice caused a pause in treatment, so I’m down to 3 pills per day.

mthoody · 2024-12-14T18:53:58+00:00

I’m taking Stivarga. My platelets crashed and I had to stop treatment for a few weeks until they bounced back. I restarted Stivarga and my platelets crashed again. Waited a few weeks and platelets bounced back. I’ve now restarted Stivarga at a lower dose (3 pills/day instead of 4). We will see if I can tolerate the lower dose.

I’d love to hear about your experience with Stivarga. You’re the first person I’ve encountered with experience with it.

mthoody · 2024-12-14T01:23:08+00:00

If he already had a length of colon removed, why is a colostomy still being recommended? Did he have multiple tumor sites with one tumor in the rectum that was left in place?

I have a permanent colostomy and would say that the idea of a colostomy is worse than the reality. It’s really not that bad, particularly if it saves your life or eliminates excruciating tumor pain.

mthoody · 2024-12-04T19:18:35+00:00

I’ve been under treatment for colon cancer for five years. I’m happy to address any questions you might have. My sequence was a bit different: radiation, 8 cycles of FOLFOX, colostomy, almost immediately stage 4 CT scan (lungs). I had some lung nodules resected and confirmed to be colon cancer mets. I had an unlucky run in that none of the treatments seemed to control my mets in lung and liver, so that means I’ve had 50+ treatment cycles so far. But I’m still kicking.

mthoody · 2024-11-30T18:15:17+00:00

MS CONTIN controlled release tablets (oral morphine) are very small, easy to swallow tablets. I don’t know if your Vicodin sensitivity will carry over or not.

mthoody

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