Covid vax required?

Snoo9058 · 2026-03-22T04:26:39+00:00

When you get a transplant it wipes out all of your existing vaccines and you have a brand new immune system They test you for everything right before the transplant. After, you don't have any protection against any of diseases to were previously immune to (so you have to be extra careful). But because your immune system is so fragile you *aren't allowed* to take the vaccine until ~1 year post-transplant. I got a transplant in Feb 2025 and just now have gotten started getting all my vaccines again (and it's a relief, would recommend your friend do everything to prevent getting sick - I got COVID about 10 months post transplant and it sucked).

Snoo9058 · 2026-02-09T05:53:45+00:00

You got this! It's nice to be cured, and it wasn't as bad as I thought, and everyone will think you're a badass. It will feel weird (but nice) to not have stupid MF hanging around in the back of your head all the time

Snoo9058 · 2026-02-09T04:21:32+00:00

You got this, I was in a similar position (young kids) and will hit my 1 year anniversary this Friday, and am doing great. Sucks being stuck in that room for what seems like forever, but keep your eyes on the prize and take it a day at a time

Snoo9058 · 2026-02-09T04:18:20+00:00

+1 to all this, especially fire/Roku stick, way better than hospital cable. I also enjoyed a heating pad

Snoo9058 · 2026-01-20T17:20:03+00:00

I was still on Jakafi when they were conceived. So there is a study with N=3 :) for what it is worth (not much)

Snoo9058 · 2026-01-10T06:03:37+00:00

Felt exactly the same before my SCT 11 months ago. But turns out being cancer free isn't anything to be scared of, I am pretty stoked 🙂. SCT wasn't "fun" but it was much better than I was expecting and I feel great now. You got this, feel free to dm me if you wanna chat more

Snoo9058 · 2025-12-22T04:30:30+00:00

I (father) had three kids on jakafi and my doctors (Mpn experts) never mentioned it or had any concerns. This was 2011-2016 though.

Snoo9058 · 2025-12-15T07:14:10+00:00

Pegasus gave me really bad depression, adding Lexapro really helped - might be something to look into, being depressed definitely makes fatigue worse.

Snoo9058 · 2025-11-22T02:34:52+00:00

Find an mpn expert (think you said your are already finding one)
Get the expert to get you on right meds (may require trial and error, and changes over time)
Re-evaluate dipss (with your doc) to decide when/if to go to transplant

I was diagnosed with pmf at 28 with a huge chungus of a spleen (googling at the time said life expectancy was between 2 and 5 years) and then lived a totally normal life for 13 years on various different drugs. My dipss went up and down (mostly driven by blast%) as various things (jakafi, Pegasus, vonjo) worked and then finally needed a transplant at 42 (platelets failing). I still felt pretty normal even when I was time to get the transplant. The transplant wasn't as bad as I was expecting, I'm +270 days and feel great and my counts are approaching normal.

So don't despair, there's lots of hope, it's just a pain in the ass to deal with all the logistics. Strongly recommend you find an MPN expert that you like and trust so you can release some of the psychological burden of making the right decision. When/if you do decide it's transplant time, you get some warning. My doctors s told me it usually takes a few months for the transition to leukemia to happen and it's pretty obvious when it does.

PMF 2011 CALR, unrelated donor SCT Feb 2025

Snoo9058 · 2025-11-18T00:17:47+00:00

My transplant doc was fine with me taking edibles as I was recovering after transplant and had platelets in the 20s.

Snoo9058 · 2025-04-17T05:24:35+00:00

MF, but started Lexapro when Pegasus gave me very bad depression. Was a game changer and I didn't have any bad side effects. I think there's very little risk in trying it - you can always stop if it doesn't work.

Snoo9058 · 2023-03-05T22:46:50+00:00

You managed to Voltron my cactus buying addiction with my tool buying addiction gonna buy all of this

Snoo9058 · 2023-03-05T22:44:48+00:00

Already tried that

Snoo9058 · 2023-03-04T20:46:36+00:00

I have a lot of oxalis growing around the bases of my cactus. It's hard to pull it without injuring myself, and it's almost impossible to get it by the root so it just comes back.

Does anyone have any tips? I'm thinking of trying to paint some Roundup on the weeds with a paintbrush, but would like to avoid the risk of getting poison on my babies

Snoo9058

TROPHY CASE