u/Pitiful_Owl_9396

Hi all!! I (F21) posted here a few weeks ago with anxiety for my (53M) dad's ASCT. Well it is day +15 for him right now and I wanted to share his experience so far for those who might be anxious about their upcoming ASCT. While the recovery is far from over, my dad completely shocked the whole transplant team by having an unusually smooth outpatient ASCT.

The only major symptom my dad felt in the first 0-4 days was nausea. He was able to keep foods down and still had an appetite, he just had to eat slower. When the nausea got stronger, he was able to keep it controlled by Zofran and was put on a schedule for it. We were dreading the inevitable vomiting and loss of appetite, but it never actually came. He only vomited once and that was more-so an accidental induced vomiting by eating too much rather than not being able to keep anything down.

The nurses were also consistently preparing him for diarrhea and we spent a lot of our time looking at experiences on here to prepare for what our upcoming days might look like. Around day 3, he asked the nurses "Is there any way I could possibly make it through this without any diarrhea?" and was answered with "No. You will inevitably get it sometime next week."

It's safe to say he still has not had any diarrhea so far.

The main concern the team saw with him was just dehydration, as his heart rate was consistently in the 110's but would be brought down with fluids. This is also when the fatigue started hitting the worst, as his counts dropped to zero around day +7. He also did not need any transfusions other than one bag of platelets on day +9.

When he received the platelet transfusion, we were told that around 70% of patients spike a fever and end up needing to be admitted to the hospital. So we waited and monitored. The anxiety was REAL. I don't know which waiting game was worse, the one for the diarrhea or the one for fever. That night, he felt feverish and we checked, it was 100.3. We called the emergency hotline and were told since it didn't cross the threshold of 100.4, to continuously monitor but be prepared to come in if it hits that threshold. Within a few minutes, it went down to 99.1 then continuously lowered for the rest of the night. Since then, he has not had a fever nor had to be admitted to the hospital. He technically engrafted on day +11 but was officially declared engrafted on day +12 when his ANC was at 6.1. Right now, he is still just feeling wiped and tired but we're sure that's gonna be better with time. The nurses were constantly joking calling him a superhuman and saying "Did you even get the Melphalan?" because when asked the long list of symptoms daily, he would just respond with, "No, I'm fine." If you ask my dad what the worst part of his ASCT was, he would probably tell you that it was waking up at 6:45 am everyday to go to the hospital.

All that to say, prepare for the worst but truly hope for the best because it IS possible.

My dad (53M) got diagnosed back in December. They luckily caught it before any organ damage and they said that his organs actually looked really good when they first gave him the diagnosis. Other than a lesion on his hip, he's been doing really well and his doctors said that he's been responding extremely well to chemo (He's also not on revlimid). We're currently about to go through his outpatient asct at the end of this month, he also just got his central line catheter this past week. I'm going to be his primary caregiver throughout this whole process and the anxiety has been nearly debilitating for me. I want to prepare as best as I can for him but the closer we get to transplant day, the more I fear of the recovery process and the risk of getting infections or ultimately not having the outcome we were hoping for after asct. I just hate seeing him have to go through this. I've been scrolling through support groups all day just to cling to the fact that other people are going through this too and we're not alone, but its just so hard and scary. Anyone relate? How do you all manage or cope?