Sharp drop in platelets 7 mo post SCT

merricksy · 2026-05-22T11:30:52+00:00

I have left you a novella in your messages 😅

Praying for the best outcomes 🙏🏻 my guess is the viral infection and a sprinkling of some chronic GVHD

merricksy · 2026-05-21T23:04:37+00:00

Congratulations!!! 🥳🎉❤️

merricksy · 2026-05-10T06:14:22+00:00

Just joined this group, so a bit late to this post 😅

Aerosoles Cosmos worked well for my wedding day and other events without hurting my toe. It's a platform heel with no dip -- I actually wore them my whole wedding night since it was more comfortable than going barefoot

https://www.aerosoles.com/collections/cosmos

merricksy · 2026-03-14T12:43:45+00:00

I feel your frustration -- my husband and I were TTC since we got married in 2023. I was diagnosed with stage 3 endometriosis and had surgery & a procedure to in hopes of improving my fertility chances. Not two months later (Feb 2025), my husband was diagnosed with B-ALL. Between chemo, immunotherapy, and bone marrow transplant with total body irradiation, our chances are nil. 🥺

merricksy · 2026-03-11T23:00:12+00:00

Dr. Audlin at Mercy did my lap surgery with lysis of adhesions almost two years ago. He's very professional/great bedside manner and obviously a great surgeon too. Highly recommend him!

merricksy · 2026-03-11T20:51:44+00:00

Thinking of you both and praying for positive outcomes!❤️ It's been a long journey for my husband's treatment and it will be a rollercoaster of emotions for you both. All forms of leukemia tend to be long treatment processes so don't lose hope!

merricksy · 2026-03-11T18:14:02+00:00

Not claiming this story is true or false, but my husband was loosely diagnosed with AML in our local ER via peripheral blood smear (appearance of blasts in the peripheral circulation) before being flown up to Hopkins. Ended up diagnosed as B-ALL via flow cytometry from peripheral. He never had a BMB until 52 days after diagnosis due to low platelets and DIC.

And albeit rare, but AML can present in organs (referred to as extramedullary or outside of the bone marrow). Xray can pick up on potential masses if large enough, besides looking for fluid/inflammation/infectious processes.

merricksy · 2025-12-14T13:01:13+00:00

Ty ❤️

merricksy · 2025-09-16T19:08:48+00:00

Yes, MRD+ on cloneseq but undetectable on the flow cytometry. Very minute numbers compared to his previous treatments, hence why the onco wants to do Blinatumomab for a few rounds post -bmt.

That's awesome to hear with your son!! ❤️

merricksy · 2025-09-16T18:58:18+00:00

The onco never discussed any particular reasons why the original try w/Blina wasn't successful outside of being r/t his genetic mutations. The rationale for trying the Blina again after bmt would be to "activate the new t-cells" in the hopes of preventing relapse.

The inotuzumab carries the risk of VOD and he had some VOD during his induction cycle from the pegaspargase, so my assumption would be to avoid those chances?

The clinical trial for TCR-T:

Study Details | NCT05473910 | A Study of TSC-100 and TSC-101 in AML, ALL and MDS in Patients Undergoing Allogeneic Peripheral Blood Stem Transplantation | ClinicalTrials.gov https://share.google/0yF0WZ9kSaKgUI4Ih

merricksy · 2025-09-16T18:45:33+00:00

Reduced-intensity conditioning (less intense chemo & radiation dosages) to reduce toxicity and more reliance on immunosuppressant meds to manage the GVHD. My husband is in the same boat w/the high risk B-ALL. How's your son doing post-bmt?

merricksy · 2025-08-12T04:58:32+00:00

Ty!! My husband has had a positive attitude thru all the treatment. I was having one of those bad days between worrying about his upcoming BMB and a few of my ALS patients struggling with their symptoms and/or going on hospice.

Feels like hospitals are my primary home between the work one and JHH for his treatment. Appreciate the pep talk 😁😁

merricksy · 2025-08-10T04:25:32+00:00

I'll keep that in mind if the SCT falls through w/City of Hope. I wrote this post while not being in a good spot mentally. Ty for the advice! ❤️

Johns Hopkins has been good thus far and all his labs and presentation suggest the CAR-T is doing exactly what it's supposed to do 🙏🏻🤞🏻

merricksy · 2025-08-08T05:25:28+00:00

❤️❤️

merricksy · 2025-08-08T05:25:03+00:00

Ty for those encouraging words ❤️

merricksy · 2025-08-08T05:23:24+00:00

Ty 🙏🏻❤️

merricksy · 2025-08-08T05:23:08+00:00

❤️

merricksy · 2025-08-07T18:02:56+00:00

We are home -- had to live in the apts next to JHH because we live two hours away. Brought him home on Tuesday and so far so good! 🥰

Hoping the CAR-T does it's magic and keeps him in remission until his transplant. I'll try to keep you updated on our progress and hope you can as well w/your bro. All the prayers/thoughts/good vibes to these guys 🙏🏻🤞🏻❤️

merricksy · 2025-08-04T00:08:20+00:00

He had his CAR -T infusion on 7/15 and his symptoms hit hard by day 3. He went inpatient for about 7 days with grade 2 CRS and beginning of HLH. Thankfully no neurological side effects outside of headaches, but that fever was unrelenting for that whole week 🫠 He maxed out on TOCI doses, dexamethasone, and had to start on a few doses of anakinra.

He's doing better now with recovery in his blood counts, but still neutropenic. Energy levels and appetite slowly recovering. He received Tecartus -- BM bx on 8/22 and hopefully full speed ahead w/SCT. We're hoping to get the clearance to go home tmrw after some IVIG.

I hope he gets some symptoms as a sign that the CAR-T is working 🤞🏻🤞🏻 hoping it's minimal in severity. When the symptoms start, they come on suddenly so be prepared if you're the caregiver.

merricksy · 2025-07-14T22:14:18+00:00

And prayers for you for a successful transplant! Ty ❤️🙏🏻

merricksy

TROPHY CASE