Anyone on Calquence as first line treatment for MCL?

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?

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.

🙂

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?

For sure I’ll post updates.

We’re celebrating any good news. 🌻

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.

I was diagnosed with MCL in April of 2025. In July my treatment plan was Rituximab, Calquence & Venteoclax. After my first 2 Rituximab infusions I developed a serum sickness and the stopped the infusions. I am currently only taking Calquence as first line treatment with no plans to start venetoclax. I am currently in metabolic remission after 8 weeks of taking the Calquence. My concern is that my remission will not be durable or long lasting on a single agent therapy. Does anyone have experience with the results of the first line monotherapy of a BTK inhibitor like Calquence?

Hi @balvare, I know early in a treatment it’s such a time of uncertainty and we look for any ray of hope we can find. Despite not being able to continue with the Rituximab, from what you’ve mentioned, you’ve had positive results with remission for 8 weeks with the targeted therapy drug, Calquence.

Taking a break from everything but the Calquence is allowing your body to recover from the previous reaction. Your doctor is monitoring you closely through these current treatments. They will be in the position to notice any potential changes and can then discuss other treatment plans if necessary. But as long as you’re stable there is no reason to let doubt creep in.
IF something changes, THEN your doctor will take care of it. Worrying won’t change the outcome but it will rob you of peace of mind. Now is the time enjoy your life in remission.

There is another discussion in the forum with a member who has MCL receiving Calquence. Here is the link:
Anyone on Calquence as first line treatment for MCL?
https://connect.mayoclinic.org/discussion/anyone-on-calquence-as-first-line-treatment-for-mcl/
Other discussion with mentions of Calquence are listed here: https://connect.mayoclinic.org/search/

From my own experience, I found it really helpful to not let my mind wander to ‘what ifs’. Those negative thoughts can rob you of so much energy, creating unnecessary stress and anxiety. Try refocusing your thoughts with positive affirmations, meditative sessions, maybe some art therapy, nature walks, etc., all of those things allow for incremental healing and are good coping skills to get you through this!
What thoughts has your doctor expressed about Calquence as your solo medication right now? Are you tolerating it well?

Thank you. I am grateful for being in remission, but I tend to worry a bit about how effective the monotherapy is long term. I lost my daughter to cancer & am currently raising my grandchildren. I hope to be around long enough to get them raised. I have been tolerating Calquence. No major side effects.

I was in remission after 8 weeks of taking Calquence. I have had no real side effects outside of some headaches when I first started which has resolved. Who is your doctor and why are they suggesting CART -T as the Frontline the therapy?

@balvare. I’m so sorry to hear about the loss of your daughter. That’s incredibly tragic and difficult under any circumstances but having children left behind is so heart-wrenching. Certainly understandable why you’re so concerned about your own continued good health right now. Taking care of your grandchildren is a full time job. And I dare say a good distraction. But it’s the quiet times when you’re alone with your reflections that gives you time to ponder all of the ‘what ifs’… This is where it’s important mentally wad up the negative thoughts and toss them in a basket! Replace them with one or two positive thoughts. It’s amazing how easy it becomes the more you do it.

Tell me a little about your daughter. What type of cancer did she have? How old are your grandchildren?
I think being optimist about how well you’re doing right now is a good place to start.