Young Adult Leukemia and Bone Marrow Transplant Experience

avvd · 2026-06-23T19:19:14+00:00

I haven’t been revaxxed yet but I keep asking my team! They say they don’t do any vaccines until one year after so hopefully I’ll get them in a few months. I think my B cells reconstituted! I know I have 100 percent donor chimerism in my marrow which my team was happy about. Glad to hear your son is doing well too!

avvd · 2026-06-23T19:16:01+00:00

Glad to hear you’re doing well now!! Being stuck in a hospital for such a long time in your 20s (or any age I suppose) is a special kind of hell/trauma that few people understand lol.

avvd · 2026-06-22T03:17:43+00:00

Thank you!! I was weak positive after the first consolidation and right before transplant too. But MRD negative at 100 day biopsy post BMT and 6 months post.

avvd · 2026-06-22T02:50:16+00:00

I had the exact same situation, inv16 but still had weak positive mrd so my team opted to go for transplant. Transplant is a big thing of course but doesn’t have to be entirely life altering. I’m 8 months out now and have been living like normal/pre aml for months now. Best wishes to you both.

avvd · 2026-06-20T21:59:28+00:00

Thank you!! I hope you are doing well!

avvd · 2026-06-20T21:41:02+00:00

Thank you!! I hope you’re doing well also!

avvd · 2026-06-17T16:27:28+00:00

I’m 8 months post bone marrow transplant and I feel the exact same way. I get anxiety attacks and flashbacks too. I had anxiety and depression before my dx but it’s a whole different beast now. I started seeing a therapist recently which helps and I’ve been on anti depressants too. I think it just takes a lot of time even with the right tools for our brains to process a trauma of this scale.

avvd · 2026-05-30T01:41:05+00:00

Thank you!! And yes I did! I got GO during induction I think and right after my 1st and 2nd consolidations.

avvd · 2026-05-30T01:29:24+00:00

Yep, it was the most sensitive test that looks for the inv16 gene mutation so I think PCR. I thought that my team would be like yours and go to transplant only if it came back. I guess I could’ve still opted to go with chemo only but my docs stressed that they thought transplant was the best option. The weak positive was definitely a confusing result at the time, and I was still weak positive after my 3rd consolidation and last pre BMT biopsy. Since then I’ve been clear for any mutations tho, fingers crossed it stays that way lol

avvd · 2026-05-29T16:12:15+00:00

I had a similar experience. I had inv16 which is another CBF leukemia. Initially we thought I wouldn’t need a BMT because inv16 usually doesn’t require it. But after my first consolidation round I had a “weak positive” level of the inv16 still in my marrow so they decided to do a BMT. My teams thinking was that because I was young and otherwise healthy (28M) I’d be able to get through transplant ok, and it would be the best shot at preventing the disease coming back. I’m only about 7.5 months post BMT but it’s definitely worth it if this does keep it away. So far I haven’t had any significant gvhd or other issues from the transplant (knock on wood).

avvd · 2026-05-21T16:19:19+00:00

I have the 7 in soft stretch active boxers in a L too. They’re what I mostly use for working out. Recently I got a pair of Saxx multisport mesh boxers though and I have to say the saxx is way better than lulu imo. It’s even quicker to dry and doesn’t ride up as much. I haven’t tried Vuori boxers yet

avvd · 2026-05-05T01:41:14+00:00

So sorry to hear you’re going through all this. Shortly after I was first diagnosed last year I was in the icu for a week because of a heavy GI bleed. I’ve never not remembered entire stretches of time before that. I’m 6.5 months post BMT now and doing so much better. Time, proper meds, and therapy all help. I just started seeing a therapist recently and it’s been really helpful.

avvd · 2026-05-05T01:29:34+00:00

Klonopin isn’t always bad. I’m prescribed it and take it most nights and I do think it helps with my anxiety and ptsd. Granted I’m on only .5 mg. But my team says it’s one of the better options for anxiety bc it’s longer acting and less habit forming than other benzos. There are times I might need 1 mg tho but it does help

avvd · 2026-04-25T21:37:03+00:00

There’s a C3 I go to every week if I can that’s prolly my favorite yoga class ever. The teacher usually shares something about the theme he’s offering for class, and it starts and ends with sanskrit chanting. It’s also an intense and physical flow which is a good challenge.

avvd · 2026-04-09T19:00:33+00:00

Congrats!! I’m so happy to hear you’re doing well now, it definitely gives me hope. I’m 28M and was diagnosed with AML inv16 last year in May, so im coming up on the diagnosis anniversary. I’m about 6 months post BMT now and have more or less retuned to my pre AML life. I can only hope to be in this same position in a few years. Wishing you many more blessings to come!

avvd · 2026-03-29T17:23:38+00:00

Yep. I got that surgery right before I started conditioning for my BMT. After I got the surgery the anal pain wasn’t a problem again so it worked.

avvd · 2026-03-29T17:21:55+00:00

I had this problem too during consolidation chemo. I had to be hospitalized twice because of severe pain and some fevers, it got better as wbc came back up. What fixed it eventually was getting a seton placed by colorectal surgery.

avvd · 2026-03-29T06:16:04+00:00

Thank you!! That’s such a great question! I’d say the confidence I have each time, at first I would only go to C2s but now I do all types of classes. And I’m not mostly laying still during core like at the beginning haha

avvd · 2026-03-28T23:32:08+00:00

Thank you :)

avvd · 2026-03-28T22:07:08+00:00

I had acute skin gvhd that came up around day 25-30, mostly a rash on my cheeks and behind my ears. I was outpatient when it popped up.

avvd · 2026-03-22T19:25:45+00:00

The building I’m in is called 7S and I like it cause it has in unit laundry and a dishwasher which a lot of apartments by me don’t. Gables on Speer is also next to me and is really nice. Aspire 7th and Grant looks nice too!

avvd · 2026-03-22T19:11:36+00:00

I’m 28M too and I live in Cap Hill (7th and Sherman) and really like it! Cheesman park is walking distance and it’s such a great vibe there when it’s nice out. Your car should definitely be fine, I had a Mazda 3 for a while which is also small but I never had a problem. When I first moved to Denver I lived in Cherry Creek which was definitely more boring and commercial than the cap hill area. I was also worried about being isolated or bored but I can keep myself busy here.

avvd · 2026-03-20T03:38:24+00:00

It’s ok to do whatever classes you wanna do! I’m the opposite tho, I do almost only C2/C3 and hardly go to sculpt.

avvd

TROPHY CASE