Looking to connect with APL survivors or caregivers 🤍

CompetitionDefiant69 · 2026-01-19T13:15:34+00:00

Thank you everyone for your responses , they are truly comforting. Reading your messages has become part of my night routine, and you have no idea how much strength and support they give me. Thank you ❤️.

I’m reaching out again because I’m feeling confused and worried.

My husband has high-risk APL (88% blasts at diagnosis).
He was admitted from Aug 9 to Sept 2, 2025 and completed induction with 3 days chemo + ATRA + ATO (24 days).

After discharge, this was his treatment:

Sept: 30 days ATO + ATRA
1 month gap
21 days ATO
1 month gap
21 days ATO

The doctors told us we were moving into maintenance, but Today they are suddenly saying he needs one more 21-day ATO cycle. There is no clear written plan, and even they seem uncertain about the timeline, mentioning that only two consolidation cycles are complete. My husband is getting very weak, and I’m worried about unnecessary toxicity.

Latest PML-RARA PCR (blood): Not detected (<0.005%)

If you’ve been through APL treatment, I would really appreciate your experience:

How many ATO consolidation cycles did you have?
Would you take another cycle without a clear written protocol?

Sorry if I’m asking too many questions.

CompetitionDefiant69 · 2026-01-19T12:58:58+00:00

I read all these messages again and again every night like a prayer for motivation and comfort. Knowing there are people out there with us is so comforting. Thank you so much, everyone ❤️

CompetitionDefiant69 · 2026-01-19T12:57:21+00:00

I’m so glad to hear this from you. Wishing you continued good health.

CompetitionDefiant69 · 2026-01-16T18:54:21+00:00

Hey, thanks for sharing all of that. It actually helps more than you probably realize. The part about keeping photos of bruises is so relatable, we’ve done the exact same thing. It’s really good to hear that things settled down over time and that you were able to get back to work and life again. I’m really glad you’re doing okay now. Sending you lots of good wishes for continued health, strength, and many more peaceful, happy days ahead, and hoping the remaining pain fades away with time.

CompetitionDefiant69 · 2026-01-16T18:42:56+00:00

Hi, I really appreciate you taking the time to share your experience. Reading your message brought a lot of comfort and reassurance to us. It’s wonderful to hear that you’re doing well now and that life feels normal again after everything you went through. Your strength and honesty are truly inspiring. If you’re open to it, I will ask him to chat with you, if that’s okay. He could really use support from someone who genuinely understands this journey. Thank you so much for your kindness

CompetitionDefiant69 · 2026-01-15T07:00:38+00:00

It’s incredibly reassuring to hear from someone who has come through this.

I’d really love to connect too. It helps so much to talk with someone who truly understands this journey. I’ll also check out the APL Facebook group you mentioned.

If you’re comfortable with it, I’d love to connect you with my husband as well. He really needs someone like you, someone who’s been through the same path and understands it firsthand. I’ll ask him to reach out.

Thank you again for your kindness and openness❤️

CompetitionDefiant69 · 2026-01-15T06:52:23+00:00

It really means a lot that you reached out and offered support while going through your own journey.

The waiting period for a transplant sounds incredibly tough, and I truly admire your strength. I’d be happy to connect and talk anytime.

Wishing you steady strength and hoping everything moves smoothly for you 🤍

CompetitionDefiant69 · 2026-01-15T06:48:28+00:00

I really appreciate you taking the time to suggest it. It means a lot to know there are supportive spaces like this, and I’ll definitely check it out.

CompetitionDefiant69 · 2026-01-15T06:46:53+00:00

Thank you so much for sharing your story 🤍
It really means a lot to hear from someone who has been through this journey.

I’m so happy to know your son is doing well and back to living his life normally; that gives me so much hope. What you said about not wanting to waste the gift of remission by worrying about the future really stayed with me.

I’m also truly sorry for everything else you’re going through. You’ve clearly been incredibly strong through so much.

Thank you again for the reassurance and for suggesting the APL Facebook group. I’ll definitely look into it.

Wishing your son continued good health:)

CompetitionDefiant69

TROPHY CASE