u/scorpiorising07

We got news yesterday that my dad’s (68, diagnosed with sAML after MDS in June ‘25, underwent transplant in December ‘25) AML has relapsed, 14% blasts on biopsy. Beginning of this week he was admitted for photophoresis treatment for his GvHD, but before he could commence this we got news of the relapse. We are waiting for the rest of the biopsy results. He’s been started on a azacitidine injection + oral venetoclax protocol immediately and they’re planning for a donor lymphocyte transfusion if possible. We are all a bit heartbroken and tired, seeing as my dad’s blood counts never fully recovered post transplant and he was on almost weekly transfusions which was taking a toll on him mentally. On top of this, back in December ‘24 my dad also had a partial nephrectomy to remove a clear cell carcinoma kidney tumour. Bcos his creatinine remains high (the amount of meds he is on post transplant is putting pressure on the kidneys) he can’t have a contrast CT scan so they can’t properly monitor him, which is adding to all the stress.

I guess just looking for ppl with any experiences of the Aza/Ven regimen and words of comfort maybe.

Currently on 200 mg Lamotrigine and 40 mg Citalopram for OCD and depression. I’ve been on 200 mg Lamotrigine for about 8 months; I started tapering up almost a year ago, previously I’d been on 25 mg for years (mostly as an add on for depression/emotional dysregulation). I’ve had OCD for as long as I can remember and last year it got really bad, I was suicidal and in constant crisis. Lamotrigine has addressed my OCD symptoms incredibly well. I didn’t know my brain could feel like this. I still get intrusive thoughts and obsessions, but where they would’ve previously stuck around for weeks or months, now it can just be a few hours or days, and the intensity is so much less. I’m able to do things I couldn’t have done a year ago, to deal with triggers so much better, I’m much more social and it just feels like I have more space in my brain.

However, I am worried about some side effects and emotional blunting. A big OCD worry I have is hair loss, I’ve been experiencing more shedding this last year/year and a half and I’m super worried Lamotrigine is contributing to this. My psych has completely brushed this off. I was highly deficient in iron and vitamin D, so maybe now that I’m supplementing it’ll get better, but still, the uncertainty is so so so difficult. When it comes to the blunting, I’m not sure if it is rly that or just that I’ve not been this stable in years, but it just doesn’t feel entirely right. Things that I used to get really upset about before don’t phase me as much, I feel like I have less access to difficult emotions even when the situation warrants sadness, anger etc. I can still tear up, feel emotional, but it just feels shallow. I’ve not been writing, reading, making art or taking photos as much, I feel like I’ve lost touch with the creative and emotional side of me, which makes me sad. I feel quite apathetic and like I can’t be bothered, but it doesn’t feel like depression necessarily. It’s confusing and weird!!!

I had a psychiatrist appt mid May, and she doesn’t want to make any changes since it seems to be working for my anxiety so well and she is worried about destabilising me and me going into crisis again. I was wondering if the Citalopram might be the culprit too. She thinks me feeling apathetic is because of work related burn out and needing a change etc. There’s probably some truth to it but I know it’s not all that!

Just wanted to vent and curious how emotional blunting has felt for ppl on Lamotrigine/if anyone has similar experiences.