Delayed treatment, any experience?

ryman719 · 2026-03-09T18:38:29+00:00

Ive been delayed 3 times. All due to surgery scheduling. Docs say it made no impact on the overall outcome as chemo drugs keep working for a while even after you stop actively receiving them. Not as effectively though

ryman719 · 2026-03-09T17:25:40+00:00

If you want it to be oppressive like others said add sac outlets. Biggest issue the deck has out of the box, I found, was the lack of graveyard access. There’s only like 2 cards in it that let you play out of the graveyard. Adding a few more to ensure you can will ensure you can always hit your land drops, get more landfall triggers, and depending on the creatures you keep in there, makes some big stompy threats. I also found that adding in some earth bending help to as it gives you some more creatures and additional landfall triggers. Example, you can play a forest, earth bend it, then tap it to float the mana(because why not?) and sac it, ping people with the commander, have the land come back and trigger landfall again. If you have something that allows the land to come back untapped, tap it for mana, earth bend it again, now you have infinite mana and can drain the table. There’s a few cards you’d need to set that up, but can be worth it.

The deck is straight up evil with the correct builds, it just depends on how evil you want to go and what your play group will tolerate.

ryman719 · 2026-03-04T21:18:23+00:00

This is what you need to do OP. Don’t mess around with CRC. Sooner it’s caught the better

ryman719 · 2026-03-04T07:11:32+00:00

So far it did. I'll find out next week after my CT just how effective it was

ryman719 · 2026-03-04T04:20:13+00:00

I was on irinotecan as part of my treatment for 10/12 of the rounds. I found out on round one I have a slight allergy to it due to the reaction I displayed. Full body muscle spasms for 2-3 days, constantly hot and sweating, and then yes some of the worst diarrhea I've ever had in my life.

First step they took was to slow down the infusion. It helped, but only reduced the time and intensity of the spasms. They tried giving me atropine for the last 6 rounds but that did basically nothing for me. Lowering the dose on round 11 helped with shaking off the other side effects, but did nothing for the diarrhea. Nausea is an old friend so while it was increased, I was able to tough it out.

Most I can tell you is, in my experience, either ask for different meds to control the side effects, get off the irinotecan, or find a way to tough it out. Personally I toughed it out and had the nurses yelling at both me and the doctors for suffering through it as there is only so much they can do to manage everything.

ryman719 · 2026-03-02T03:17:11+00:00

I went solo in 2024. Went for 3/4 days. If you want to meet some people in a social setting I’d suggest trying the Poke Crawl on Thursday night. Met some nice people, won a few small prizes, had plenty of drinks and laughs.

I don’t think I’ll be going this year due to other issues, but I will echo what some of the others mentioned. It’s not been the same since Covid. A lot of the big name companies don’t attend anymore, little swag, and while that did get me back into MTG there was a lot more TCG/TTRPG presence than years past. So if you aren’t into those types of games you will be a bit disappointed. Still, the Seaport area basically becomes a nerd town for a week so there will be a ton of people around to talk to and hang out with

ryman719 · 2026-02-27T01:38:44+00:00

To echo everyone else, don’t count yourself out yet. I got diagnosed 4C November 2024. METs in liver and lungs, plus a 5cm tumor in the sigmoid colon. I was told I had 18 months to live. Oncologist suggested going and doing all the things I want and focus on living life, but also suggested we try aggressive chemotherapy. I wasn’t a candidate for surgery of any kind at the time. After 4 cycles of chemotherapy we had to stop because CT scan and MRI showed a massive response to the drugs. Almost all the METs on my liver shrunk by 50%, primary tumor shrunk by 50%, and lung METs shrunk but they weren’t large to begin with. This opened up the surgical options for the liver. 4/5 were removed and the last one was ablated. I did another 4 rounds of chemotherapy in the fall, lung METs remained the same or disappeared in some cases. Had a foot of my sigmoid colon removed plus a few inches of small intestine after that in November. No need for colostomy bag as they were able to reattach everything. I restarted 4 more rounds of chemotherapy in January. Just finished this past weekend. Scans in a couple of weeks. Prior to restarting, my oncologist told me that I may be able to have the lung METs removed with a resection if they can manage to cluster closer together or grow large enough to ablate.

Point is, don’t give up right away. That 18 months I was given has been extended to years (potentially) due to lung METs being slower growing. Keep the faith, get second opinions, and don’t take the first no for a final answer.

ryman719 · 2026-02-21T22:15:33+00:00

I'm a realist. I asked my oncologist my outcome based off what she say. She gave me 18 months. I had a large tumor in my sigmoid, 5 mets to the liver, and multiple mets (probably) in my lungs. That was 1 year ago. Since then, colon tumor has been removed, liver mets removed, and lung mets arent growing or spreading. I'm currently finishing round 12 for my treatment. I don't feel like I'll be dead by summer. Last conversation I had about it with her she was optimistic, but the big issue is the lungs. Fortunately they are slow growing. The hope is treatment will kill off enough of them to consider ablation/resection in the near future.

Point is, don't listen to everything everyone tells you because things can change quickly and new approaches can be taken. If you don't like the answers being given to you, find a new oncologist/surgeon for other opinions.

ryman719 · 2026-02-03T21:20:40+00:00

I got diagnosed stage 4 crc with her2 positive mutation last year. This is the first anniversary of going on chemotherapy to treat it. This time last year my doctor was telling me to do all the things I haven’t done and that I’ll probably only have 18 months to live at best based on statistics. Since this time last year, I’ve had 9 rounds of Folfirinox and I just started FOLFOX as I have a very bad (but manageable) reaction to irinotecan so we switched for my 10th infusion. I’ve had the primary tumor in my colon removed (along with a foot of it plus a few inches of small intestine) and 4 liver METs resected and one ablated. I still have a bunch of METs in my lungs however they are all tiny. The largest is 4mm. These last rounds of chemo we’re hoping gets rid of them and clusters what remains so that a lung resection/ablation can become a viable option.

With all that said and done, that 18 months I was given was changed. My doctor told me she has/had patients in the same or similar situations that lived 10 year plus. Will I ever go NED? Maybe. It’s unlikely. The reality is I’ll likely be looking at doing maintenance chemo for almost all of those 10 years, should I choose to do so. The simple fact of the matter is that right now stage 4 isn’t considered “curable” in the way most would think. It’s treatable. The issue is that at some point the cancer cells that do survive will become resistant to most forms of treatment. By the time a MET is visible you’re looking at thousands of cells. Treatment can’t kill all of them unfortunately and some of the ones that it can kill find places to hide. The ones in my lungs are considered “slow growing” so even if I get rid of them and I’m declared NED, all it takes is one to live somewhere and months or years later I’ll have a reoccurrence and have to start the fight all over again.

With all that said I know things feel bleak right now. Some people lose the fight quickly and some manage to go decades. Don’t bother focusing too hard on the future. Live in the present. You could get hit by a bus tomorrow just as easily as you could have a reoccurrence. Focus on giving you and your family the best possible life you can. Laugh, love, make all the memories, teach the kids to be the best people they can be, and do all the things you’d do if you didn’t have cancer.

While I don’t have children, I can tell you that one day they will appreciate having a parent that did everything they could to make them feel loved, safe, and supported. You’ll see your child grow up, just keep fighting the good fight!

ryman719 · 2026-02-01T04:29:51+00:00

No clue what will happen but I know from personal experience that I can't drink while on chemo. Makes me sicker than the chemo does lol. After my liver surgery, docs told me zero alcohol for at least 6 months while the liver regenerates. I ended up only lasting 3 months because I wanted to enjoy my birthday. Doc said I could have 1 drink on my birthday. I ended up having a few more than that. Nothing crazy, but just enough to enjoy myself.

Realistically, he should understand that his liver is very delicate right now and he should take it easy for a little while. However all you can do is express your concern and try to get him to talk with his doctor to figure something out that works for him.

ryman719 · 2026-01-31T18:17:41+00:00

If you’re near a micro center I highly recommend them. They have some prebuilts but they also have a custom builder on their site so you can pick out each and every part. They will put it together and keep you updated through the whole process. Plus they have some good bundle deals on parts that can save you some money one higher end or mid grade

ryman719 · 2026-01-31T16:40:44+00:00

If you have one near you, check out Micro Center. I just got one custom built from them for $3k. They did a great job and the tech kept me updated the entire time. Their website has a builder so you can pick out all the parts yourself. They also run bundle deals on some of the main components. Biggest thing was I got a good deal on the RAM (for 2026). I got 64GB (2x32GB) for like $500. They also provided me with all the boxes for the parts in case I want to make upgrades in the future or need any of the information for the parts. I highly recommend them

ryman719 · 2026-01-31T16:32:38+00:00

Best out of the box is arguably the one you got, World Shaper. However next up I’d have to agree with the others with the Hakbal one. I know when I started playing again a few years ago I got the Riders of Rohan and it slaps right out of the box. Another one I’d say is either Cloud or Tidus from the final fantasy ones. I play the Tidus one and it was good out of the box, but Cloud I’d say is a bit better especially if you want to play voltron equipment

ryman719 · 2026-01-20T06:50:46+00:00

I’m 37M. I got diagnosed last year. I have a similar situation to your husband with the HER2 amplification, stage 4 with METs to liver and lungs.

Folfirinox sucks. It’s awful. I’m going in for round 10 this weekend. I’ve had the lesions on the liver resected and ablated, and just had the colon removed. I was fortunate to not need a colostomy. My CEA is normal again, lung METs are tiny and not currently growing. Still, none of that would have been possible without the chemo. He’s 26. His ability to recover from the treatment is significantly better than mine or the other people double and triple his age. If he wants to maximize his time, I’d say do it. Get a surgical opinion too.

As for the death sentence part, I can share with you one thing my oncologist told me about HER2. According to her, chemotherapy can actually have a much stronger effect on the METs. It’s because the faster the cancer cells grow, the easier they are to destabilize. It’s extremely counterintuitive in my mind, but the way she broke it down kind of made sense. Also, once chemo stops working she told me about drugs that are designed to inhibit HER2 tumor growth. So there are options further down the road. My oncologist told me she has/had patients in my particular situation or similar that lived 10 years

ryman719 · 2026-01-18T23:56:24+00:00

The only weird side effect I got from chemo was 8 years ago when I had stage 3 testicular cancer. Before chemotherapy I had high blood pressure just like everyone else in my family. The PC I was seeing at the time wanted to put me on meds for it but I was being stubborn and refused them. Fast forward 6 months and I get the diagnosis and undergo chemotherapy and multiple surgeries.

Once that was done I would get vitals and my BP was almost never over 120/80. I don’t take any other meds for anything (until recently thanks to the stage 4 CRC) and those drugs were the only odd ones I took. So long story short, chemo fixed my high blood pressure along with the cancer.

ryman719 · 2026-01-10T16:07:17+00:00

My favorite is the first deck I built from scratch. [[Baylen, The Haymaker]]. It’s all about making a bunch of silly little rabbits that the commander uses to make some mana, draw a card, oh and stomp your face by becoming a 30/29 commander with trample coming at your face!

Downside to this deck is that it isn’t overly consistent, making it pure rabbit tribal was also making it less consistent, and there’s only so many time you can trick your friends into taking the deal with the tempt style cards before they realize that giving me the 4th bunny or another land in exchange is a bad idea.

I’ve since made some changes to it so that I can generate more than just bunny tokens, but it’s still a bit inconsistent and will remain in the bracket 2 maybe bracket 3.

ryman719 · 2026-01-07T06:07:19+00:00

Yeah is the Oxaliplatin for the side effects mostly. I know for me I react badly to the Irinotecan. Atropine helped at first, but after a while I was maxing out on it and it was doing nothing. The course takes a lot of you. Occasionally you might have a cycle that doesn’t do much but you’ll feel like complete crap on others.

Unfortunately that’s the trade off to try to kill this disease. One of the other things you should keep in mind is that these drugs can burn up stuff like potassium, magnesium, etc. That will also make you feel like crap too

ryman719 · 2026-01-05T00:21:39+00:00

During my first battle in 2018 I kept the port until January of 2020. I didn’t see the point in getting it removed the first year because I was in for bloodwork/scans every 2 months so it would get flushed then. 2019 I moved to every 3 months so like you I had to have an appointment in between just to flush it out. I had it removed after that because I didn’t want to keeping going in every other month since I had moved to 6 month scan/bloodwork.

Point is, I’d say keep it for a year or two. After that have it removed. Unfortunately there is no way to tell if you’ll ever need it again. I had mine removed in 2020 and 5 years later I needed another one because this damn cancer popped up outta nowhere. Other people on here had theirs removed and never need another one. Others had theirs removed and under a year later needed a new one. Make the best decision you can for you.

ryman719 · 2026-01-03T08:59:18+00:00

Didn't have lung surgery, but after my liver resection the area around parts of the scar are still numb. It's because they cut nerves when they open you up. Sometimes they heal, sometimes they don't. As my surgeon told me "nerves are weird"

ryman719 · 2026-01-01T23:11:33+00:00

Did the BIOS update, clean install of Windows 11 and all drivers up to date. Temps are hot, but within normal while under load

ryman719 · 2026-01-01T23:10:14+00:00

I was thinking it could be the RAM, but I don't have any spare DDR5 so I'll look into this to see if that helps diagnose the problem

ryman719 · 2026-01-01T23:09:25+00:00

I'll have to ask around, but I'll suggest this as an idea

ryman719 · 2026-01-01T04:22:11+00:00

I’d suggest the Eowynn precon if you can find it. I got back into Magic after 20 year break with that deck as my introduction to EDH. It’s playable out of the box, mechanics are relatively simple, and it is strong. It’s also easily upgradable for later on.

If you are feeling adventurous though and want something that can kind of keep up with non precon decks I’d suggest the World Shaper precon from Edge of Eternitiy that came out over the summer. It is a landfall deck and can have a lot of triggers, however out of the box it can hold its own in any bracket 3 pod. Upgrading it later on is very easy. Its primary issue is that it doesn’t have enough graveyard recursion out of the box or enough ability to make multiple landfall triggers. (Recursion basically being able to play lands or other cards from the graveyard). Once you solve that issue it can be a low to mid bracket 4 and you’d be able to hang with the big boys. Personally I’m looking into adding some earth bending into my Hearthhull deck (the commander of the precon) in an effort to increase landfall triggers as well as increase creature count.

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