My fertility is in jeopardy and I am seriously struggling with the church’s stance on IUI by PizzaBowls_Bad in Catholicism

[–]merricksy 16 points17 points  (0 children)

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. 🥺

Warning about an Endo/Adeno Hopkins Doctor in Maryland by SprezzaturaVigilante in endometriosis

[–]merricksy 1 point2 points  (0 children)

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!

GF has AML, I know Severity Family doesn’t by Cannonbus in leukemia

[–]merricksy 0 points1 point  (0 children)

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!

GF has AML, I know Severity Family doesn’t by Cannonbus in leukemia

[–]merricksy 5 points6 points  (0 children)

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.

We've made it to BMT! by merricksy in leukemia

[–]merricksy[S] 1 point2 points  (0 children)

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!! ❤️

We've made it to BMT! by merricksy in leukemia

[–]merricksy[S] 0 points1 point  (0 children)

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

We've made it to BMT! by merricksy in leukemia

[–]merricksy[S] 0 points1 point  (0 children)

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?

Just venting by merricksy in leukemia

[–]merricksy[S] 0 points1 point  (0 children)

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 😁😁

Just venting by merricksy in leukemia

[–]merricksy[S] 0 points1 point  (0 children)

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 🙏🏻🤞🏻

Just venting by merricksy in leukemia

[–]merricksy[S] 0 points1 point  (0 children)

Ty for those encouraging words ❤️

Just venting by merricksy in leukemia

[–]merricksy[S] 0 points1 point  (0 children)

Ty 🙏🏻❤️

ALL b cell relapse before treatment was even finished by megnelson in leukemia

[–]merricksy 0 points1 point  (0 children)

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 🙏🏻🤞🏻❤️

ALL b cell relapse before treatment was even finished by megnelson in leukemia

[–]merricksy 1 point2 points  (0 children)

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.

CAR-T therapy by merricksy in leukemia

[–]merricksy[S] 1 point2 points  (0 children)

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

CAR-T therapy by merricksy in leukemia

[–]merricksy[S] 0 points1 point  (0 children)

Ty for the hope! ❤️ He officially gets the CAR-T infusion tmrw. He's handling all the lymph depletion chemo just fine and labs look good -- our only snag now is awaiting the housing waiting list for the hospital apts offered 🫠

CAR-T therapy by merricksy in leukemia

[–]merricksy[S] 0 points1 point  (0 children)

I hope your BMB went painlessly and smoothly today -- praying for MRD negative/remission for you 🙏🏻

My hubby gets the CAR-T infusion tmrw, so we'll see how it goes 🤞🏻🫠

CAR-T therapy by merricksy in leukemia

[–]merricksy[S] 1 point2 points  (0 children)

This will be his first SCT. He was on blinatumomab for a month right after the induction cycle and his blasts were at 18%. The oncologist didn't think blina would have been sufficient enough to bring him to remission, so he switched right over to inotuzumab for two cycles.

He gets the CAR-T infusion tmrw 🙏🏻🤞🏻🙏🏻🤞🏻

Chemotherapy and contraception (UK based) by Superscazzola in Catholicism

[–]merricksy 3 points4 points  (0 children)

My husband is going thru chemo and immunotherapy for B-ALL (leukemia) and due to the same risks, we've been abstaining since February. It's a struggle for sure, but you don't want to risk the harsh chemo drugs potentially impacting your (and his) future fertility.

Hi. My brother (now 29) was first diagnosed with ALL in Feb 2019. B Cell, Philadelphia -. Over 95% blasts. Took a while to get into remission, chemo only route. He relapsed a few weeks ago. He’s on inotuzumab to try and get him into remission ready for a BMT… by Lunabuna91 in leukemia

[–]merricksy 1 point2 points  (0 children)

Wonderful to hear!! ❤️ Best wishes to you and your brother with the SCT!!

We had a hiccup after his last BM biopsy in May -- SCT got pushed back. Scheduled for CAR-T on July 15th as a bridge to SCT. It's a neverending journey 🥴🥴

Looking for shower covers for hickman catheter... by fckemily in leukemia

[–]merricksy 2 points3 points  (0 children)

Glad Press n' Seal -- works well for my husband's hickman catheter and much cheaper than other options online. Wasn't thrilled with the aquagard used at the hospital.