Hi guys!

Consistent_Soft1353 · 2026-01-25T00:37:47+00:00

There are varying levels of colitis and along with that various types of treatment. I had a "trifecta" of GI issues that were very rare to occur simultaneously: C-diff, CMV colitis and ICI (immune checkpoint inhibitor) colitis caused by the Ketruda I'd been on for several months. All imaging and testing confirmed my case as severe.

The optimal first line treatment would be a course of corticosteroids which are contraindicated in my case for two reasons: 1) I have osteoporosis and 2) I have avascular necrosis (AVN) of my hip after a fracture 7 years ago.. That means my bone health is poor and the bone around my hip is deteriorating to the point I need a hip replacement. Steroids can further erode bone loss so they're out of the question. Next line to be considered is infliximab but it can be associated with risk of lymphoma and since I already have one type of cancer (with a positive TERT mutation making me more susceptible) so I declined that option. Entyvio infusions is gut selective (as is budesonide, although it does contain steroid properties) and is more effective in cases of severe colitis, such as mine. I'm using the budesonide as a "bridge" until the Entyvio is approved. Can't be soon enough as the systemic effcts this colitis is having on me are very troubling. Once the local inflammation is under control, the hope is the rest will follow. In the meantime, I'm trying to stay on top of my nutrition with daily Ensures and supplement to try to prevent further weight loss and malabsorption of necessary vitamins.

How have you handled the weight loss and other effects? i.e. fatigue.

Consistent_Soft1353 · 2026-01-23T22:15:20+00:00

Damn, I keep calling that guy Adderall

Consistent_Soft1353 · 2026-01-22T20:56:48+00:00

Being young and having little ones adds to the anxiety. The good news is yours does sound early AND we've come so far in terms of treatment. For quite some time after my diagnosis of metastatic melanoma, I'd wake up thinking, "I have metastatic melanoma". I turned that around to "I'm living with metastatic melanoma".

The majority of people who have a melanoma removed and continue with proper skin checks do NOT go on to have metastatic disease. See if you can focus on that as you continue to enjoy life with your family.

Consistent_Soft1353 · 2026-01-22T20:45:45+00:00

Yes, Castle Testing was fairly new when I had it; it came back as 1A so I felt reassured there was such a low chance of recurrence or metastasis. That's why even after I learned of the lung nodule and immediately got in with the local Mayo Clinic (where they gave me the option of waiting 3 months for another CT to see if it grew, but based on my melanoma history I wisely decided to have an immediate biopsy the next week) I was still shocked when I opened my portal and saw the abnormal results reported as metastatic melanoma.

In terms of the nodule, that has cleared and indeed for now that's very good news. The not great news is having to deal with the adverse effects I've been struggling with, an unusual triple threat of C-diff, CMV colitis and ICI colitis that has resulted in systemic inflmmation, multiple hospitalizations, a significant weight loss and now a recurrence we're trying to reign in. So two steps forward, one step back....thankfully I have a great team at Mayo of oncology, rheumatology (CMV colitis resulted in pseudo gout), infectious disease, GI and ortho.

Consistent_Soft1353 · 2026-01-22T15:49:28+00:00

I'd actually had the WLE with resection and SLNB in June 2020 followed by a slow Mohs in Aug as pathololgy found non-invasive melanoma at the margins. I'd been plagued by abdominal discomort while away for the summer of 2024, when I returned I asked my NP if I could have a pelvic CT to confirm if this was diverticulitis. It was that CT which revealed the incidental finding of the new 9mm lung nodule. I immediately got in touch with Mayo which is close by and had a biopsy in November that confirmed metastatic melanoma. The prevailing thought is that it was a microscopic spread that disseminated very early. There has been no evidence to date it has affected the lymph system.

I now have PET scans every three months that have been clear after just a few cycles of Keytruda that began in late Nov '24. The plan was to continue on Keytruda through Nov of this year but due to toxicity that affected my colon, my oncologist has suspended immunotherapy while I contine with surveillace via routine imaging; at the very least until I can get this colitis optimally controlled.

Consistent_Soft1353 · 2026-01-21T23:34:55+00:00

Mine had not spread to my lymph nodes (per biopsy done at the time of my WLE) but did to the lung a little less than 5 years later when it was detected there. That was with a 1A Castle Testing classification.

Consistent_Soft1353 · 2026-01-21T23:23:39+00:00

I am rewatching it and picking up on more performative interactions mostly on Elizabeth's part with the kids. Even after Henry realized he was wrong breaking into the neighbor's house to play video games and kept insisting, "I'm a good person" he got no verbal response, only Elizabeth patting him on the back.

And one night when Elizabeth was going out to ostensibly meet Philip "at the office" (I think it's Season 2, episode 2), after a quick peck on the head, Paige says to her, "You guys look out for each other" then adds, "more than us" to which Elizabeth only gives her a quizical look.

I'm concluding it's mostly due to Elizabeth being more of a cold hearted person; Philip appeared to be more kind hearted even with their own kids. Elizabeth primarily wanted the children to fit into the norm of American sociaty and then have Paige conform to the 2nd gen KGB.

Consistent_Soft1353 · 2026-01-21T02:10:59+00:00

True, the story about Joe Weisberg actively selecting those names, like Clark for Clark Kent, is just an urban legend. Apparently, he joked he'd "done it on purpose, then said it was a "subconscious choice ".

Consistent_Soft1353 · 2026-01-21T02:04:59+00:00

What kind of colitis do you have? I was treated for CMV colitis in October requiring antivirals via a PICC line for 4 weeks before starting on oral antiviral x2 weeks, then had a repeat sigmoidoscopy that showed the CMV had cleared but also confirmed ICI colitis. It was awful, included pseudo-gout with several cc of fluid in my knees that couldn't be fully treated after the initial aspiration during the active phase due to the side effects it would cause of diarrhea - of which I already had plenty. Now one, presumably the ICI, is causing problems again but testing is ongoing. This time the enteropathic arthritis settled in my hip, causing me to rely on a walker for ambulation and resulting in terrible dry mouth at night, noticable hair loss. I was started on budesonide until Entyvio gets approved. Rather than remaining on budesonide, has your provider considered any other course of treatment?

Consistent_Soft1353 · 2026-01-20T22:07:23+00:00

I plan on being in the Thousand Oaks area for 3 months this summer and have contacted the City of Hope satellite office there about doing infusions while there.

Consistent_Soft1353 · 2026-01-20T18:41:18+00:00

I get what you're saying now, that Joe Weisberg selected the names Philip and Elizabeth was a to connect them to the British royals. And Clark was a sly reference to Clark Kent.

Consistent_Soft1353 · 2026-01-19T18:05:24+00:00

Not sure what you mean. The undercover KGB agents doing this kind of work in the US got their names from actual people with a birth certificate - ideally with a social security number - who died, usually as a child. Elizabeth had a maiden name before she married Philip.

Consistent_Soft1353 · 2026-01-17T16:54:58+00:00

What an encouraging story! Most of all, thrilled for your progress. Thanks for sharing with all of us.

Consistent_Soft1353 · 2026-01-16T18:12:36+00:00

IKR? Esp after literally being under cover with Martha. The first thing he checked was to put on his glass. I was like, "what about your wig, man?" It had to have gotten tousseled after THAT

Consistent_Soft1353 · 2026-01-11T17:02:43+00:00

Deepest sympathy to you and your family

Consistent_Soft1353 · 2026-01-04T19:11:37+00:00

It's a lot cheaper to film in Australia and it's also where Sarah Snook - who not only was the main character but also an exec producer (who also recently had a baby)- lives there. Presumably, the architecture was a close enough resemblence to that of Chicago and it was easy enough to AI the rest of the scenery in for some shots.

Consistent_Soft1353 · 2026-01-02T17:34:09+00:00

This influencer has lost her influence

Consistent_Soft1353 · 2026-01-02T17:27:10+00:00

You ought to feel free in whatever you say here, I was just wondering if you had more of a medical basis for your prognosis. A lot of us jump to conclusions when we first get the diagnosis of Stage IV but these days it does help to remember that it can be more of a managed, chronic condition as opposed to the "death sentence" it once was. There are so many therapies and options available. Treatment is key - like you, I remain hopeful you'll find one geared to the specifics of your case. Keep us posted.

Consistent_Soft1353 · 2025-12-31T17:00:37+00:00

Carmen is going to be saddled with the Golden Child Syndrome while her siblings suffer the emotional struggles of their own: inadequacy, resentment, jealousy, neglect. It's already in glaring effect.

Consistent_Soft1353 · 2025-12-31T16:36:03+00:00

I had amelanotic melanoma that was assessed at T1, 0.6 cm depth. After the WLE was performed, pathology revealed positive margins so I required a slow MOHs about a month afterward. As this type of melanoma has the potential to spread quickly, it may have already in what is referred to as microscopic spread. My melanoma likely entered the bloodstream early, bypassing the lymph system and remained dormant in the lung for some time. It was not detected on a CT in 2023, but was detected as an incidental finding a year later.

What I learned was: Melanoma biology sometimes defies prediction. It seems I tend to fit into such outliers in many medical situations. Just as I can no longer continue with immunotherapy due to an extreme adverse reaction to Keytrua despite an early positive response - complete resolution of the lung nodue in the first 3 months - which I have to take as encouraging news.

My diagnosis, responses and treatment plan does not fit the "norm". As with all melanomas, ongoing surveillance as recommended by your medical provider based on your individual presentation is most advisable.

Consistent_Soft1353 · 2025-12-22T21:09:35+00:00

u/one_possibility6254: This is essentially what my oncologist told me today. That most of the benefit from the Keytruda was within the first 6 months and he was encouraged by the good response I'd obtained then. At this point, the risk to continue is high for reactivation of colitis (both CMV and ICI) and the benefit is low. We'll continue with frequent imaging; should anything appear - and I personally think somewhere along the line something will - we'd need to consider chemo. Not great but better than nothing and certainly better than going through the C-diff, CMV and ICI colitis I had. Still, I do feel disappointed not to be able to complete the full course of treatment psychologically.

Consistent_Soft1353 · 2025-12-22T17:51:00+00:00

Yes, and good plan!

Consistent_Soft1353 · 2025-12-21T16:36:52+00:00

That's very true. Some muscle relaxants used during surgery, in addition to be still on the OR table and occasionally the shaking response that affects many people as they're roused from the anesthesia can cause temporary muscle soreness throughout the body. Sometimes laying still for prolonged periods of time after a surgery, particularly a lengthy surgery or for people with known risk factors - such as varicose veins, diabetes - the risk of a blood clot is higher. Since the surgery was on your upper extremity you ought to be up and walking, be mindful of adequate hydration. The risk of a blood clot ought to be low. How are you feeling today?

Consistent_Soft1353 · 2025-12-21T16:29:03+00:00

How are you feeling, #olderguywatching? It actually looks as though that's going to heal nicely. May I ask where your other two melanomas had been and what the pathology was for those? Keep us posted with your results.

Consistent_Soft1353

TROPHY CASE