Mantle cell lymphoma

Hi everyone,

I’m new here, so apologies if I’m posting in the wrong place? Trying to get my head around this.

Last year, my mum was diagnosed with Mantle Cell Lymphoma. It took nearly a year to diagnose. She has been told she will likely have to start aggressive chemo in January.

I’m totally terrified and seem to be getting mixed messages about whether it’s non-curable or in fact terminal. I just go by what she tells me, but as it’s rare, there isn’t much info on it, or seem to be many people with it. Does anyone have the same thing? Or know anyone with it? Feeling lost, anxious and extremely upset by it all.

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Hi @Amz and welcome to the group. Don’t apologise, you’ve come to the right place and if it wasn’t we would point you in the right direction. Wow, what a lot for you all to get your head around. I know, for me, it was difficult to explain to friends and family. I can’t answer any medical questions, the medical team are the best for that. Is there any possibility of you being involved in her next consultation or does she have a specialist nurse you could contact? I would recommend writing down all of your questions, and your mums. Does she have anybody with her at appointments? I know I found it difficult to take information in so wonder if your mum is to? The blood cancer support line are so helpful and I think it would be a good start for you to talk through your concerns and get some advice moving forward. Also, to help you as well as this is all really frightening for you and it must be so hard to process it all. Please keep posting. We are all here to help X

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Hi Nichola,
Thank you so much for your reply. It means a lot.
I went to the first couple of appointments, but then the last couple I haven’t been able to due to COVID :cry: and I’m not sure any of the clinical team would be able to talk to me without my mum being present due to date protection, which I understand totally. I just really don’t understand everything, and to hear my mum say it’s terminal and she’s dying, is so hard, especially when that wasn’t what was discussed when I went to the first couple of appointments, my head is just abit all over the place.
She’s due to start chemo next month, so I guess we will just have to wait and see how that goes. I’ve contacted the support line who were fantastic, and are calling me back
With some more info this week.
I’m so very grateful that I’ve found somewhere to talk to people who know what we’re going through. X

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Hi @Amz. It’s so hard isn’t it. I think you kind off lose that control when you don’t know know the facts. Still, write down your questions and your mum could take them with her? I’m sure the support line will be able to offer you a lot off support and advice - I’m so glad you called them. In the meantime, take care of yourself and keep sharing. It really does help. Sending extra special wishes to you and your mum X

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That’s very kind of you, thank you so much! I really appreciate it. I hope you are well x

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Hi @Amz, welcome to our forum and It does not matter where you post, the important thing is that you have posted.
I think being a family member/carer is the most difficult, powerless role in the world.
Yes, you must be totally terrified, feeling lost, anxious and extremely upset that is natural and it sounds as if your mum is too.
I am a great one for writing questions, fears, symptoms, practicalities etc down and ensure I get my questions answered and really understood. I also write down replies. Perhaps you and your mum could write the questions together and who knows what restrictions will be in January, perhaps you will be able to go with your mum then, obviously it is up to her.
I cannot answer your questions but they are best asked of your mum’s medical team by her or you with her permission.
This forum is as much for you as your mum we are here to support each other we often share the same fears, thoughts, feelings and practicalities.
We will also be supporting each other through the holiday season and I am so glad you have contacted the support line.
I look forward to hearing more from you, take care.

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Hi Erica,

Thank you so much for the warm welcome and advice, it’s very much appreciated :blush: x

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It’s so understandable you’re feeling like this @Amz. I’m sorry to hear that you and your mum are going through what sounds like a really tough time. It’s so understandable that you’re feeling like you’re getting mixed messages, it can be a complex condition to understand.

Firstly you may find it useful to have our high-grade NHL and our low-grade NHL booklets to hand - as you may know, Mantle cell lymphoma is a type of lymphoma that falls between low-grade and high-grade NHL. Treatment will be different from the standard low-grade NHL treatment.
Low grade NHL
High Grade NHL

I also wondered if this information from Lymphoma Action might help clarify it a little - Generally, this type of lymphoma is difficult to cure. It almost always relapses and needs more treatment. People who are fit enough to have intensive treatments usually have a better outlook but there are increasing treatment options, including newer, targeted drugs, for people who cannot have such treatments. Targeted drugs also offer new treatment options if the lymphoma relapses. You can read more of their Mantle Cell Lymphoma information here

So @Amz, in most cases, Mantle Cell Lymphoma isn’t cured, as it comes back but there are further treatments which can be used to help treat/manage the condition. The treatment pathway used will depend a lot on the individual. There’s some general information around this on the page I’ve linked to above. If you want to talk this through with us at any point, please don’t hesitate to get in touch with our support line.

As you’ll know, your Mum’s treatment team such as her clinical nurse specialist or consultant are the only people who can talk to you about your mum’s condition, treatment and prognosis, in the context of your Mum’s individual circumstances. As @Nichola75 said, do you think your mum would give permission for you her treatment team to talk things through with you, as it may help you to feel reassured if you feel more informed.

Just in case it can be helpful for you or your mum at all, we have a section of our website for people who are newly diagnosed with blood cancer, here
We also have a section for people who have a loved one diagnosed with blood cancer, here

Lastly @Amz, we have a section around mind and emotions which includes guidance on ways to look after yourself and get emotional support.
If you would like to talk anything through with us at any point, or if there’s anything we can do to support you and your mum, we’re only a phone call away on 0808 2080 888.
I really hope this forum is a useful source of support for you now and going forwards. Take care

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Hi Alice.
Thank you so much for your reply. It’s actually been so helpful! I appreciate it!
I think taking so long to get the diagnosis, has made the journey harder so far, as there were so many unknowns, and now the diagnosis of something quite rare, doesn’t help at all.
This site and the support line have been outstanding though, I really am grateful!
X

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Hi @Amz. Been thinking about you. How are things? X

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Hi Nichola, thank you so much. She has been told she is starting chemo the first week in January.
Dreading it, but I know it’s got to be done. Just wish COVID wasn’t around so I could see her properly :cry:
Hope you have a lovely Christmas! Thank you for thinking of us x

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Oh @Amz, of course we are thinking of you.
At least your mum has a treatment plan in place, I hate being in limbo and out of control with what is happening.
Yes, Covid certainly does make things so much more scary in so many ways.
It must be so tough not being able to see your mum properly, but better safe than sorry.
Take care and please keep sharing on the forum how it is for you. Stay safe and spoil yourself.

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At least there is a plan! How is your mum feeling about it all? I can only imagine how hard it is for you all x

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Yes, I’m glad we have a plan. I do hate being in limbo! She seems more calm about it than I do. She’s a strong person so I’m hoping that will help her get through it! X

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Hi @Amz, well don’t forget we are here to support you, Take care and be kind to yourselves.

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Thank you! I really appreciate it! Today was her first day of chemo! Think she took it better than I did! COVID doesn’t help, but I know so many of you are feeling this so I know we aren’t alone :heart:

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Hi @Amz, yes, I often think it is more difficult for the carers.
You are so powerless to ‘make it better’.
We are here to support you.
Are there any other family members, friends or carers out there that can say how it is for them.

Glad it went ok. You prob need a stiff drink, or something else to help you relax. A very stressful day. One down x

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Hope your mum was ok in the days following her first chemo. Sending lots of love x

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Thanks guys. So nice knowing you are here!
They have been ok… she said she had a bad day yesterday, but felt a little better today.
Although when I saw her, she didn’t look well. I guess that’s to be expected, but still hard to see. :cry:

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