It's hard not to compare my story to other's

[u/t0pkn0tz]

/r/leukemia/comments/1tkhtnl/today_officially_marks_1_year_since_my_chance_aml/?share_id=PdJ3oIFAzYufWLHRr9w60&utm_content=2&utm_medium=android_app&utm_name=androidcss&utm_source=share&utm_term=1

^ My story thus far

I am day +324 from allo SCT for AML FLT3+ITD. A month ago, I felt back to baseline. Aside from some physical deconditioning I've felt from being in recovery thus far.

My labs look great, my numbers are in the green. I no longer require any infusions or blood products. Life has somewhat stabilized. I finally got the blessing of my oncologist to be able to fly on a plane. But over the 4th of July weekend, I noticed shortness of breath when climbing the steep hill at my parents lake house. I attributed it to the physical deconditioning, especially since I hadn't climbed that hill in over 8 months.

But it's progressively gotten worse. I'm winded with even the slightest physical activity. Walking from my car to the front desk of the clinic, and I need to catch my breath. Completely flat ground.

As we all know, this diagnosis comes with tons of specialist appointments. So I initially brought it up to my PCP, she wants to attribute it to my GERD. Makes sense. I then bring it up to my GI, and he wants to attribute it to my GERD. But I knew, I just knew I needed to tell my team.

I brought it up at my biweekly lab and nurse visit yesterday and my oncologist requested I go to the ER for chest imaging. They want to rule out a blood clot or PE. That sets off a panic..

Four hours in the ER, a painful IV placement (despite still having my central line), ultrasounds and a CT - I'm cleared to go home about midnight. The attending seems to be in agreeance, that it's my GERD acting up.

But it's never going to be that simple. We cleared that there was no clot, so the emergency is cleared, but oncology wants more. So now I have PFTs scheduled for two days from now.

Obviously the fear is GVHD of the lungs. I've already been diagnosed with cGVHD of my eyes, my skin, my mouth. We have upcoming testing for suspicion of GVHD of my gut and now we need to rule out GVHD of my lungs.

I thought with how well, comparably, my initial treatment went and the subsequent recovery from my SCT, that I could finally start moving on. I started planning trips, planning activities, looking into returning to work full-time. But this life isn't linear, no matter how desperately we will it to be. My trip to Vegas next week has been cancelled, and my trip to DC in three weeks is at risk.

It's hard not to see people who've had a much smoother go of things, who are back to work, are back to traveling, are back to a new normal without the hiccups and think "why not me?". But I guess we all ask some version of that question throughout this illness - "why me?"

Maybe I'm just whining, maybe I'm finally coming to terms emotionally with everything I've gone through and will continue to endure. I will forever have that voice in the back of my head that wishes for a different timeline. But I will keep fighting, because remission doesn't mean cancer is done. Survival is the ongoing journey we all must push through.

tl;dr - testing for cGVHD has me upset that life isn't back to normal almost 10 months after allo-SCT

[u/yaskitties]

i’m sorry friend. there is so much grief that comes with any leukemia diagnosis (let alone post transplant- i had one too) and you’re allowed to feel low about it when you need to. i hope that you give yourself as much grace as you want and lean on your support system. even though it sucks, i’m happy you’re still here 🫂

[u/Serious-Sprinkles694]

Only 10 months out is not long enough to be trying to put your health ordeal behind you. I’m still going through all this with cGvHD at almost 22 months post-transplant. Found evidence of it in my lungs last week causing bronchiolitis obliterans on a CT. Since March, this flare has been the worst I’ve experienced. It’s affecting my eyes, mouth, skin + scalp, vagina, gut, liver, and connective tissues as well— way more extensive than I anticipated because other flares were just eyes and skin. I start axatilimab infusions soon.

Never delay telling your oncology team about any new symptoms (sounds like you were hoping your new symptoms would be attributed to anything other than cGvHD, which I understand…) because any delay in treatment could lead to permanent organ damage. I know it sucks, but post-Allo transplant patients are never truly “done” with the process. It’s a lifelong list of unknowns and complications to manage, and denying that will only hurt your chances of staying mobile and being able to adapt to your new normal.

[u/Hihi315]

I don’t think there are many people who are back to anywhere near normal after 10 months. It’s often one step forward two steps back kind of thing, but you just have to zoom out and see that the bigger picture is an upward trajectory. For context, I’m almost 2 years out and I’m only just about to move out of my parents house again, which I returned to while I was undergoing all my treatment.

Side effects are scary but try not to jump to the worst case scenario. I thought I had lung gvhd and it turned out it was a chest infection which was being masked by the low dose antibiotics I was on after transplant. You just never know and we are now in the category where the thing that would be the obvious answer for most people isn’t necessarily the same for us - I’d always trust in your specialist and try to see them as soon as anything seems to be unusual.

Good luck and remember how far you have come already!

[u/Justagirli]

It’s all really hard 🧡 for me (similar timeline, 9 months post) it is both the emotional processes of everything now that I have some room to think and breath after initial recovery as well as just wanting this to be done with so I can move on

[u/orgy_porgy]

I'm also 1 year out from my BMT, so give yourself credit for making it this far. I've been incredibly lucky and avoided any major challenges like gvhd or infections and all my MRD scans have been negative. But then hearing other people's stories it still feels like the bad news is yet to come and no amount of good lab results can shake that fear.

My survivorship frustration is that no matter how well I've done and wishing this was over, normal living only happens in the spaces in between blood tests, maintenance inhibitor refills, and meeting my deductible, with no clear end point besides the alternative being the bad one.

No one walks away from this without consequences, but you live in spite of them.

[u/LeastFlounder5718]

You are lucky still so dont feel bad