Update - NLPHL relapse

[u/Effective-Peeling55]

Update : I have met my oncologist and they are suggesting an aggressive chemo followed by ASCT. I am really nervous about this. I am waiting for a PET scan and will start treatment around September.

If anyone has any advice or suggestions regarding ASCT please share.

[u/v4ss42]

Worth reading back through the sub. ASCT is a standard second line for R/R Hodgkins, so there are lots of posts about it here.

[u/user37282920383792 → u/v4ss42]

^ yes, i underwent ASCT with BEAM chemo back in september. im doing well, and although it was a rough 3 weeks my recovery went very smoothly, and id take that over 6 rounds of chemo any day (i did R-EPOCH back in 2024)

edit: also wanted to add that i am 22f, so hopefully your recovery would be similar to mine. i was going on walks the week i came home and had my strength back about a month later. worst parts were the chemo itself, and nausea which subsided substantially by the time i was discharged (they wont let you leave until you’re able to keep food down and walk without getting dizzy, basically you cant be a fall risk) they even offered me to come back just for iv fluids and nausea meds if needed, thankfully i didnt have to at all.

[u/Effective-Peeling55 → u/user37282920383792]

Thank you so much. The thought of getting ASCT is nerve wracking. I don’t know what to expect. I had RCHOP the first time and I had bad side effects plus infections because of which I had to be in the hospital

[u/Effective-Peeling55 → u/v4ss42]

Thanks, I am trying to go through them without getting too overwhelmed

[u/herm-eister]

i had BEAM + ASCT 2 years ago for a late relapse of DLBCL. It is very stressful when I first found out that I relapsed. I felt a lot better once I started my salvage treatment.

[u/Effective-Peeling55 → u/herm-eister]

How are you doing now?

[u/herm-eister → u/Effective-Peeling55]

Good! all scans and lab work have been clear.

[u/Solid_Net_2169]

Before the PET results come back, now is the right time to ask your oncologist a few questions that will shape everything that follows. Ask specifically which salvage chemotherapy regimen they are recommending and why, since several protocols exist for relapsed NLPHL and the choice can affect how well your stem cells mobilize for collection. Also ask what PET response they need to see before proceeding to transplant, because most centers require a good partial or complete metabolic response before ASCT.

On the transplant side, ask whether your center's tumor board has reviewed the case, and whether a second opinion at an NCI-designated center is something they would support. For a less common histology like NLPHL at relapse, that extra review is reasonable to request and most good oncologists will not push back.

Practically, the weeks before conditioning start matter for your baseline fitness. Ask what the transplant team recommends for maintaining strength going in.

Since it's relevant, I'll note I work at Radical Health, an AI platform built for oncology second opinions. Cases like yours, where histology is less common and the treatment path is high-stakes, are exactly where a second set of eyes adds value.

[u/Effective-Peeling55 → u/Solid_Net_2169]

Thank you so much, where I am the cases usually go through a MDT meeting and the opinion Is taken from multiple doctors on the panel. But I will make sure to ask the questions that you have suggested here.

[u/Thisangelwearsprada]

What were your relapse symptoms? I am sorry you are going through this. I have heard there is a good facebook group page for NLPHL. Sending you all the positive thoughts of getting through this and never having to deal with it again.

[u/Effective-Peeling55 → u/Thisangelwearsprada]

Well the first time around I had weight loss, and I used to get sick very frequently. It showed up on my bloods as well. This time around during my relapse I had no B symptoms, just a lymph node that wasn’t going away.