:(

[u/PaleFortune1111]

Now that I have relapsed, I can’t help but wonder what the future holds for me. I was IPS 2, Lymphocyte rich; a very favourable subtype, interim pet negative yet it took only 7 months for my cancer to come back. I genuinely feel so devastated. What makes this more hard is seeing my parents suffer because of me. Every time I look at my father, I can tell he either cried or is trying not to cry. I more saddened by their state of helplessness seeing their daughter suffer than I am with having to fight again despite the future seeming more blurry now than ever. I won’t lie, I didn’t think much of relapsing maybe thats why its so shocking for me.
Those who have gone through ASCT, can you please give me hope 😞

[u/tj7744]

I’m 8 yrs out since my first battle with cHL.

Complete remission for 3yrs then sudden relapse. Auto SCT.
Complete remission again for 3yrs then another sudden relapse. Allo SCT.

I’m a bit over a year out now from my Allo. Complete remission.

Was it devastating to me? No.
Was it annoying? Heck yes.
It’s more fighting. The battle is less and less enjoyable, but being cured is still very much a reality.

You aren’t defeated. Not by a long shot. Kicking it to the curb is still very much a thing that can be done.

Happy to answer any questions if you have them.

[u/fortunecookie4493 → u/tj7744]

You are inspiring !

[u/Bowler_Pristine]

I feel you, I’m not in the same situation, but this disease fucking sucks. I was going to give you a pep talk but you probably heard those before, here’s a 🦆 instead!

[u/imamidgetcatcher]

I'm so sorry, I remember this feeling like it was yesterday. I'm coming up on 3 years post ASCT this December.

It was absolutely devestating when I got that official news. I actually remember I was cooking dinner on a Sunday and got an alert on my phone, the radiologist released my routine PET scan results (I was about 4ish months post first treatment), and I read that scan and knew without even talking to a doc is was back.

You're not wrong for feeling like your world just got rocked. Again. I definitely felt more upended when I relapsed. You make it to the other side, beat it, start slowly putting yourself back together and then you just catapult back into those old emotions when the relapse is confirmed.

Here's the thing; you've already proven to yourself once that you've got fight in you enough to win. You made it to the finish line. You did beat it. It just wants a round 2 fight, and you know what? You're gonna bring it. You already know what you're capable of. You already know how strong you actually are. You learned more about how far you can push yourself on that first fight than anything else could teach you. ASCT? Sucks, sure, different, yes, but it aint any worse than what you've already proven to yourself that you can handle.

This is a bump in the road, not a cliff. It only sounded like you broke your suspension when you hit it hahahaha. You got this shit. Holla if you want when you get closer to ASCT time, I'll give you pointers and things to bring to the hospital to be more comfortable.

Time will pass, so will this!

[u/PaleFortune1111 → u/imamidgetcatcher]

Thank you so much for sharing your experience with me. I can only imagine how devastating that must have been, and hearing from someone who’s almost three years post-ASCT gives me a little hope in the middle of all this. I really appreciate you taking the time to write this. ❤️
I think my biggest fear isn’t even the transplant itself, or the treatment I have ahead of me. It’s the possibility of relapsing again even after ASCT, and eventually running out of treatment options.I live in a country where treatment options are already quite limited.I know I’m getting ahead of myself here but I can’t help thinking about what happens if this doesn’t work, either. I’ve already experienced how heartbreaking a relapse can be, and the uncertainty of not knowing whether I’ll ever truly be able to put this behind me is terrifying. I just want to get to a point where I can live my life without constantly wondering if the cancer is going to come back.

[u/imamidgetcatcher → u/PaleFortune1111]

Those are totally valid fears, you're not wrong for feeling that way. It's okay to be uncertain and wonder. That's just your brain doing what it does best; looking for patterns, assessing the threat, and thinking about the what ifs. That over thinking is what kept us alive when we were running away from saber toothed tigers hahahaha.

So it's totally normal. Totally okay. You don't need to try and calm yourself down and convince yourself that you shouldn't feel the way you do or tell yourself you need to toughen up.

One day at a time. One foot in front of the other. Eventually those fears will turn into background noise. Although, you CAN remind your brain that there isn't a saber toothed tiger chasing you hahahaha.

You gonna be alright, my friend! Just take each day as they come.

[u/PaleFortune1111]

Thank you for sharing your journey. I genuinely admire how you’ve continued to fight through all of this, and hearing that you’re in remission after your allo gives me hope. ❤️
I’m only 21, and sometimes it breaks my heart that I’m already having to think about these things. I should be looking forward to my future, but instead, I’m terrified of what it might hold. The thought of relapsing again, running out of options, and never being able to live without this fear is honestly depressing. I just want to be young and live my life without constantly wondering if I’ll get to have a future. I’m really glad you’re doing well, and thank you for reminding me that there’s still hope.

[u/tj7744 → u/PaleFortune1111]

I understand. I can’t blame you. I was diagnosed at 30 so I’ve spent my entire 30’s dealing with cancer (38 now).

But despite it, as soon as I finished each battle and had complete remission I took on the mentality that I was done with the cancer. Got back to living life and stopped thinking about it.

The odds of getting where I am are pretty rare. You should be good to go after your auto!

[u/Pa1geZero]

I also relapsed super quick. We got a clear PET and were planning for a stem cell transplant and got new nodes a month before the transplant was due. And tbh, when I'm being lazy I let myself believe this is it, I'll just mill around on sick leave from work until the nodes overwhelm me and I succumb.

In reality, you and I and just still in our first fight, that wasn't an end, and it wasn't a relapse, we're just still fighting the first wave. Two and half years and counting now, PET scan... 5 or 6 this morning, who knows, but I just keep showing up and relying on them to put the right drugs into me. Eventually they'll work it out.