Hi,
Im new here and was diagnosed with Mantle Cell Lymphoma in February 2026.
After a pet scan and blood tests it was stage 4 indolent. I was then referred to take part in a trial called Zebra I was picked for the treatment side which is rutuximab and zanubrutinib.
Hello @Trixie51
Thank you for taking time to post on the forum.
I am sorry to learn about your diagnosis - my heart goes out to you.
I’m sure receiving this diagnosis was very difficult and you probably have lots of questions
Please feel free to post on the forum - there are lots of helpful people who will have similar circumstance.
There is a lot of support put there and we have a dedicated team of nurses and trained support service officers offering support and information to anyone effected by blood cancer.
If you prefer you can always call us for free on [0808 2080 888](tel:0808 2080 888) (Option 1) to speak to one of our Support Service Nurses in confidence.
Our phone lines are open:
Monday, Wednesday, Thursday, Friday: 10am – 4pm
Tuesday: 10am – 7pm
Saturday: 10am – 1pm
Sunday: Closed
Bank holidays: 10am – 1pm
Alternatively, call us anytime and leave a message and we’ll get back to you within one working day.
You can email us support@bloodcancer.org.uk or complete a webform
We’ll aim to get back to you within two working days.
Do take good care of yourself
Kind regards
Mike
Hi @Trixie51 and welcome to the forum,
I’m glad you have found us as you will find lots of us who understand what you are going through.
I have follicular lymphoma and am currently on active monitoring.
How are you doing and how is the trial going? It’s a lot to process isn’t it. Was it unexpected or had you been feeling unwell?
I can see @GenesisDevice has already provided the details of the support line which is great if you need to talk anything through,
I look forward to learning more about you.
Nichola
Hi @Trixie51 and welcome to the forum. I’m sorry to hear about your diagnosis - how are you feeling?
To add to the support from @GenesisDevice and @Nichola75, I wanted to let youi know that we have information about Mantle Cell Lymphoma on our website which you might find helpful. Lymphoma Action also have some good Mantle cell lymphoma ('MCL')-specific resources if you want to explore further - they’re at lymphoma-action.org.uk.
I hope the trial is going okay. Our Clinical Trials team might be a useful point of contact for you, alongside your own team, of course.
Do keep us posted on how you’re doing - you’ll find this forum and its community are a great source of support and practical advice.
Take care,
Ceri - Blood Cancer UK Support Services
Hi Trixie, sorry to hear about your diagnosis. I have mantle cell lymphoma as well, was diagnosed in May 2024 after lots of tests. I went straight onto active monitoring and was getting regular bloods and appointments.
I tried to get onto a trial but my consultant said no. I have the TP53 mutation which can make it harder to treat.
I started treatment last April, intensive chemo with most done as an inpatient, R CHOP rituximab and cytarabine. I think it helps if you try and stay positive, you will get through it, you are stronger than you think. The haematology nurses on the ward with me were amazing.
I am now on maintenance treatment, rituximab every 2 months for about 3 or 4 years.
My main symptom from before I was diagnosed has always been fatigue and somedays I still get really tired so I know to listen to my body and take it easy.
I found it hard to find someone else with Mantle cell lymphoma ('MCL') as its one of the rarer ones, I know of a couple of people with it and do keep in touch as sometimes its nice knowing other people know exactly how you feel and they are an ear to listen.
If you want to chat anytime I am here and I wish you all the best, sending big hugs 
Kerry x
Hi @Kezza great to hear from you again.
Although I have a different blood cancer I also manage my fatigue on a daily basis.
22yrs down the line I learn something about myself every day.
Really look after yourself and take special care.
Thank you so much for your message. I think it was needed today. Its nice to know someone else with Mantle cell lymphoma ('MCL').
I’ve had one lot of treamant rutuximab and pills are zanubrutinib plus antibiotics 3 times a week.
I just wasn’t managing at work today so I have come home im so tired. I have another appointment next week for the 2nd lot. Its a 6 month treatment.
Thanks again for your message xXx
Vicky
Hi Erica, good to hear from you too. Its a constant battle dealing with things.
Hi Vicky,
You’re very welcome, i think it’s just reassuring to know there are other people with it and you aren’t going through it on your own.
Don’t know how you are still managing to work with it! I was advised not to work as I was too prone to infection and have since been medically retired on ill health grounds. I had worked in a school and no one would take the risk with me.
Keep in touch and let me know how you are getting on.
Kerry x
Hi Kerry,
I’ve had my second lot of treatment this time the rutuximab was an injection into my tummy. Who knew I would bruise so easily.
Im not feeling to bad just tired. So glad its the holidays. I also work with children in a Pre-School. I plan to continue working but I’m taking extra precautions like wearing a mask at work constantly using antibac.
I feel lucky as I haven’t had to many side effects from the treatment fingers crossed that continues.
Hope you are keeping well
Vicky xXx
Hi Vicky,
Glad you are doing well, I never got the rituximab as an Injection, everywhere seems to do things differently! I got my maintenance treatment couple weeks ago.
Thats great you are still able to work and I’m glad you don’t have many symptoms, I just kept catching things and ended up in hospital so the school wouldn’t take a risk with me.
I’m sure you will be glad to get a break for the summer.
Are you having to wear a wig? That was nearly the worst part for me and I’m still wearing it. I got mine from pretty little wigs in West Kirby, I have 2 and they’re amazing.
Chat soon, big hugs
Kerry x