Anyone on Calquence as first line treatment for MCL?

Posted by jda28 @jda28, Jul 27 4:34pm

My 33 year old daughter was diagnosed 5/13/25 with MCL as confirmed through tonsillectomy pathology report.
Stage 3 shifted to stage 4 after bone marrow biopsy shows limited involvement. Treatment plan is Calquence BTK Inhibitor followed by CAR-T Cell Therapy.

I’m glad to have found this support group. Wishing everyone well.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Lori, Volunteer Mentor | @loribmt | Jul 28 8:49am

Welcome to Connect, @jda28 though I wish it were under less stressful circumstances. Your daughter is on quite a medical journey with Mantle Cell Lymphoma at such a young age. Being a mom myself, I know how that occupies your thoughts.

There is a discussion in the forum with other members who also have been diagnosised with MCL. I posted the link for you. It is a dated discussion but you can reverse the order to read the more current replies.
https://connect.mayoclinic.org/discussion/mantle-cell-lymphoma/
From my understanding, Calquence (Acalabrutinib) is one of the targeted first line treatments for MCL and other forms of Lymphoma such as CLL. This may help bring her into remission so that she can receive CAR-T cell therapy.

CAR-T has been gaining so much ground over the past years with the advancement in treating diseases such as MCL.
Of course there’s another support group for CAR-T. ☺️ You may want to peruse through the conversations with members such as @4health4bonnie kirkwilliams2049 @anthea29 and others who recently had the CAR-T for their blood conditions. The link is below:
~CAR-T Cell Therapy: Introduce yourself and connect with others https://connect.mayoclinic.org/discussion/car-t-cell-therapy-introduce-yourself-and-connect-with-others/

Has your daughter had a good response to the Calquence?

jda28 | @jda28 | Jul 28 8:55am

In reply to @loribmt "Welcome to Connect, @jda28 though I wish it were under less stressful circumstances. Your daughter is..." + (show)

Lori - thank you for your kindness and helpful links.

Her bloodwork looked good at her recent 2-week check in. Next bloodwork is 9/15.
Tolerable side effects for now. Phew.

🙂

Lori, Volunteer Mentor | @loribmt | Jul 28 9:30am

In reply to @jda28 "Lori - thank you for your kindness and helpful links. Her bloodwork looked good at her..." + (show)

That’s awesome news! Sounds like the Calquence is doing its job! Wishing your daughter (and you) all the best! Please keep me updated, ok?

jda28 | @jda28 | Jul 28 9:45am

In reply to @loribmt "That’s awesome news! Sounds like the Calquence is doing its job! Wishing your daughter (and you)..." + (show)

For sure I’ll post updates.

We’re celebrating any good news. 🌻

ck2025 | @ck2025 | Aug 11 4:07pm

First, wishing your daughter and her family much success. Out of the blue, I, too, was diagnosed with MCL. The doctor I first went to kept saying, "We'll just watch it." A year later, and with an enlarged spleen, the cancer had mutated. I switched doctors and registered with City of Hope. She put me on Calquence immediately. It did help my numbers, but not enough. In February of this year, I had CAR-T therapy. It was not easy, and tell your daughter that no matter what, suffer through the effects. Some people have very few side effects. Mine was excruciating pain in my jaw and head, burning chest, etc. It was over in 2 hours. A high fever sent me to the hospital for 10 days. The doctor said that it meant the CAR-T was working. As of June, I am technically in remission and continue to be. Although it is not a cure, hopefully, it could last a long time. There are new treatments all the time coming out. I guess I will just "manage" it like someone with diabetes. Your daughter is young, I am 68, but I have a lot to do, so whatever it takes, I'm fighting. Just stay positive, and prayers work too.

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