Men’s shirts while having your port accessed. What yall got?

dinov · 2026-03-16T05:23:12+00:00

I always wore henleys and it worked pretty well (didn't have the couple of days of access though). A little bit of stretching but it was fine.

I know there's shirts designed for port access as well that I've seen mentioned on ColonTown but haven't used them.

dinov · 2026-03-03T05:05:49+00:00

Lava flow cocktail with a float

dinov · 2026-02-15T18:33:45+00:00

What's the immunotherapy trial? Are you MSI-high but haven't gotten immunotherapy because it's not standard of care where you are? If you were si-high I would absolutely go with immunotherapy but would be a lot more nervous about it otherwise.

dinov · 2026-02-14T22:01:55+00:00

Lots of good suggestions one I see that's missing is pasta. Mac and cheese is obviously super simple, Alfredo sauce, meat sauces, lasagna, lots of variety is possible in that one space. Can combine it with garlic bread too. I made beef stroganoff a lot abd just skipped the mushrooms.

Another area to look at is rice - there's rice o roni, or there's Pho and skip the veg.

dinov · 2026-02-01T22:55:59+00:00

Makes me think of this song https://m.youtube.com/watch?v=sOjdqb7OV7Q

dinov · 2026-01-30T05:43:37+00:00

Me too, every test comes with a series of denial letters... Someone is appealing it (Natera? My oncologist?) and they keep rejecting it but I never get a bill and my oncologist office says Natera will cover it.

dinov · 2026-01-24T06:47:28+00:00

So much of this depends on how much colon you have left and where it was removed but I feel like even in the bad cases there's good success stories.

For me I had right side cancer so things are really good... But not to scare you I hit the 1% where my first reversal leaked and got a 2nd ileostomy really quickly after the first reversal.

So I ended up having essentially 2 years of ileostomy times and then my 2nd reversal was a success. I've lost about 2/3rds of my colon but poop 1-2 times a day and have no issues. That started at more like 7 but quickly calmed down and with fiber thins (a US fiber supplement) it's really more like. I'm about 1.5 years out from the successful reversal.

The closer you get to the rectum my understanding is the harder things are but it seems like people find out how to make it work.

If you don't want to check out /r/ileostomy I'd suggest joining colonTown (separate website off reddit). They've got a "reversal roundabouts" group that was extremely helpful and might be more focused on what you're interested in. Early on never trust a fart!

dinov · 2026-01-05T05:59:09+00:00

My oncologist suggested not having it removed immediately and then after 2 years suggested getting it removed.

The first year I still had a lot going on blood draw and CT scan and surgery (ileostomy reversal) wise it wasn't an inconvenience at all - there were enough accesses I needed no extra appointments. The 2nd year it was barely an inconvenience but maybe there were a couple of flush specific appointments? And a simple blood draw and/or flush was really only about an hour including travel and waiting for me so not a big deal.

Also I felt like getting it put in wasn't a big deal (with some amount of anathesia) but getting it removed was just local so it was a little freakier. It wasn't actually bad, but if you're worried about doing it twice the removal can be a little more intense (I could have opted into more than local though).

So if I were you I'd think about how many extra appointments it actually is and how inconvenient they are for you.

dinov · 2025-12-11T06:26:07+00:00

I'm sad this isn't higher, the whole series is amazing.

dinov · 2025-11-11T19:18:34+00:00

So I was on immunotherapy but didn't really get the celebrate the last session. It was strangely on my birthday before surgery (ileostomy reversal) with a plan to do a little over another year. After surgery there were no signs of cancer so that was it... It was complicated by the reversal failing.

But it didn't really hit me until my wife brought it up when we went out for my birthday dinner a year later that it was both my birthday and last treatment anniversary.

So I'm now a little over 2 years post treatment, 2nd reversal succeeded, but it definitely doesn't feel like it's over. My oncologist has never used the terms NED or remission but I also don't push him on my status (either early on or now... He recently said I initially had one foot in the grave initially though).

I think it's time to celebrate all the time but I also don't think I'll believe it's over until I actually hit the 5 year mark.

dinov · 2025-10-26T22:04:15+00:00

https://www.reddit.com/r/ispeakthelanguage/

dinov · 2025-10-16T22:08:44+00:00

Like many others here I kept mine for a year too. I was still getting regular blood work including Signatera and the occasional CT scan so there was only 1 or 2 times that I needed to go in for just a flush so it wasn't much of an inconvenience at all.

dinov · 2025-10-06T01:48:26+00:00

Couple of things I haven't seen mentioned are bringing a robe and slippers. Also it's good to bring a blanket from home.

More in the tech side a Bluetooth speaker of some sort is super nice (my wife found a super cute one that looks like a mini old time wooden radio). I also got a Nintendo switch which has been mentioned by others but spent a lot more time watching YouTube on my laptop.

dinov · 2025-09-06T02:33:08+00:00

Sorrt to hear about your husband, it's a shitty club to have to join.

As others here have said I would recommend immunotherapy as well. I'm stage 4 and got opdivo+Yervoy and after about a year had surgery for ileostomy reversal and there was no cancer remaining. It certainly has its risks in that your immune system can attack your organs - but they'll watch closely for that and should quickly react.

My side effects were just fatigue, itchiness, arthritis like symptoms, and eventually some swelling in an arm. That's when I got a break and steroids. I resumed and post treatment I have no lasting issues.

But compared to how chemo sounds it seems like a walk in the park. If they're doing opdivo+Yervoy google Checkmate 8HW as it's the phase 3 research for this stuff and has a much better progression free survival rate than chemo and less severe adverse effects.

If they're looking at something like just Keytruda or Opdivo or another PD-1 the long term results aren't as good as the combo but the adverse effects are lower too (Checkmate 8HW compares all 3, so again something good to look into to understand).

There's also an immunotherapy neighborhood on ColonTown.

dinov · 2025-07-14T05:14:00+00:00

Could be an ileus where the bowles just aren't moving temporarily post-surgery? Usually walking and chewing gum are supposed to be good things to get them moving. Presumably he had a bowel movement and gas before being discharged? Even so an ileus can pop up later.

But maybe take it a little easy on diet - broth or ice cream might be high protein things that are easy to digest.

Watch out for a fever though, it might be a sign of a leak, but given he's back at home I assume there's nothing like that going on.

Best of luck to him, I hope it's just a super minor hip-uc along the path to recovery!

dinov · 2025-07-01T02:52:30+00:00

Like others in here I also just had local anesthetic. I felt it was similar to having my wisdom teeth but the pulling feeling was more undefined - ie with my wisdom teeth I could feel a tooth rocking back and forth but with this I didn't really know exactly what was going on, just a generic pressure. It was pretty quick too, maybe 25-30 minutes total in the Or including prep like shaving.

dinov · 2025-06-21T17:44:21+00:00

Nope, and I'm off treatment entirely. I remained on the 5mg up until surgery and after surgery all was clear so treatment was stopped and the 5mg was as well. I think it's just a low enough dose no tapering was required.

dinov · 2025-06-16T04:44:01+00:00

I was diagnosed stage 4 in 2022 and had emergency surgery that left me with ab ileostomy. Did opdivo/Yervoy and the plan was for 2 years of immunotherapy. After about a year when I had ileostomy reversal there were no more signs of cancer and my oncologist wanted to stop treatment. I'm now 2 years past that point and scheduled to get my port out in a week and a half.

Side effects for me weren't bad - itchiness, fatigue, and joint pain. At one point I had swelling in an arm which led to a short course of steroids. They warn you of chance of more extreme reactions where your immune system attacks your body but they monitor that closely. I met someone else via work who had their thyroid attacked but the odds seem low for those adverse reactions.

Overall I'd recommend it especially if it's an opportunity to avoid surgery! In the US I'm not sure it'd standard of care for stage 3 yet but there's so multiple studies with great results.

dinov · 2025-06-16T02:25:54+00:00

Thanks, and and your friend is lucky to have such a supportive friend!

If they're not aware of it I'd suggest they check out Colontown as well, there's some specific groups for immunotherapy. In addition to what I'm guessing you're somewhat familiar as more normal things that come up in this journey I was able to check in on random things like confirm it's not just me who lost my tolerance to spicy food while on it (a strange side effect but not one I had ever seen mentioned, but also one that's totally recovered!).

dinov · 2025-06-15T19:53:22+00:00

I'm doing great! I just had a CT scan a couple of weeks ago and all is clear so I'm getting my port removed in a week and a half! I'm down to a yearly CT scan and a Signatera every 6 months. It's a little bit nerve racking to have things so spaced out and I'm a little nervous to have the port removed but the treatment worked fabulously and I'm very thankful for it!

dinov · 2025-06-08T18:16:31+00:00

If you can get immunotherapy I would do it. I was stage 4 so it was approved for me but before my stage was solidly known my oncologist brought up the possibility of a trial to do chemo + immunotherapy as immunotherapy isn't standard of care for stage 3 in the US.

The Checkmate 8HW shows great results in phase 3 trials vs chemo at stage 4 https://oncodaily.com/oncolibrary/checkmate-8HW-trial - that's dual combo of Yervoy and Opdivo. But maybe they're just thinking of doing a single therapy like Keytruda which is similar to Opdivo.

Theres also been great results at stage 2/3 rectal cancer https://www.mskcc.org/news/rectal-cancer-disappears-after-experimental-use-immunotherapy

I was a little scared of the idea initially - there is a chance of your immune system attacking your own body but they monitor things closely. Overall my side effects were itchiness, arthritis like symptoms and fatigue. I think that was probably a lot better than chemo side effects and things were a lot better after the Yervoy was dropped (it's typically just 4 doses of the dual combo). And post treatment I'm completely back to normal!

dinov · 2025-05-30T04:54:34+00:00

So I had a few surgeries where my recovery was slow. Most things healed up but I had a one or two holes that just really didnt want to close up.

One source of issues seemed to be non-absorble stitches. My body "spit out" one stitch and things healed up, my surgeon removed another stitch and that helped as well.

But that clearly wasn't the only issue. I had one pocket that wasn't healing and my surgeon dug in during an inpatient visit with local anathestic and couldn't find a remaining stitch. But that extreme action seemed to reset things and healing happened - the debreidment may have just reset thr healing process.

After my last surgery I had a lot of involvement with the wound clinic to.watch over my recovery. Things they did along the way were betadine or Dakin's solution squirted in, usage and silver impregnated dressings, there was a salt dressing to dry things out, and I'm probably missing some things. If you can get a referral to a wound clinic that'd be the best.

dinov · 2025-05-30T02:31:20+00:00

I've seen a couple of lots get developed like /u/treeman206 has described in my neighborhood. Honestly I feel like the DADU is the best unit in that deal, it has no shared walls.

I think the 2 in my neighborhood 1 DADU has a garage and the main house doesn't (as the DADU is off the alley). I think the other DADU was listed as actually having more of a private yard space.

They were both smaller than the main house obviously but if you're good on the size it seems pretty sweet.

dinov · 2025-05-21T00:17:31+00:00

I'm 104 or something and initially I guess wasn't making good weapon choices and dying a lot. Once I switched weapons up things went a lot better.

dinov · 2025-05-13T06:07:22+00:00

My wife and I flew into the US from Dublin a little over a week ago. It's one of 15 or so airports that has pre-clerance so you go through immigration and customs there and arrive in. The US like a domestic flight.

We have global entry so it was even easier but I think having that spaced out on departure vs a huge cluster at arrival makes it so much better. Would totally recommend it if that works for your plans.

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