NMZ lymphoma

Hi Nikki Sst and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups. 

I don’t have Marginal Zone Lymphoma but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable other type of Low-grade non-Hodgkin lymphoma eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.

There are a few types of MZNHL….. Extranodal marginal zone lymphoma (also called MALT lymphoma) Nodal marginal zone lymphoma and Splenic marginal zone lymphoma…… do you know the one you have?

These are all slow growing…. and like my type of Lymphoma I was on Active Monitoring (Watch and Wait)…… and it took over 14 years before my condition developed to the point where full on treatment was required and that would make a significant difference resulting in long term remission.

This the nature of slow growing NHLs and are completely different from other types of cancer.

Lets look for some of the group members with MZL to pick up on your post. You can also look through the various posts (hit the main group name and scroll down) and as always you can hit reply and ask some questions and see if the member is looking in.

You can also do a site word search so do put in MZL or Marginal Zone NHL into the Search Tool near the top m, hit ‘Anywhere’ and this will bring up the older posts and again hot reply to see if the members are still using the site

Always around to help more or just to chat

Hi Mike thank you for your reply your story is very inspiring and your are a very strong man I have a slow growing lymphoma and still in shock as only went in to hospital for my gallbladder and ct scan picked up a lump so still need to come to terms  with it and accept it but my mind keeps going into overdrive 

How your Lymphoma has been found is not that unusual and it tells you a lot about slow growing NHL….. you may have been living with it for years.

Read through the links ai put n my first post (Bold text are links) and try to get to understand your condition.

You may want to check out the Lymphoma Action website. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos etc….. and it’s where all my links are from.

They run regular Support Platforms including groups where you can actually ‘talk’ with other who have walked the journey.

They also have a great Lymphoma Action Buddy Service where people can be linked up with someone who has walked the same treatment journey.

They also have a Lymphoma helpline on 0808 808 5555 where Sharon or Nic will be on hand to give you some support - open every week day from 10 till 3.

Thank you 

Hi, this is the first time I have had the guts to join in on a forum regarding my recent diagnosis. I also have low grade marginal zone lymphoma. I have a lump under my arm with pain, however I haven’t got any symptoms. I’m also in absolute shock because I also have a a meningioma benign tumor in my head. Reading your stories has made me feel a lot better. 

I’m glad you’re doing well, I hope the same for me. I’m scared and feel somewhat living in dread for the future 

Hi

i was diagnosed with Mzl in 2014 and I’m still going strong. Try not to worry too much. As my Consultant said if there is such a thing as a cancer to get this is the one

Cathy 

Hi MsThompson and welcome to the group and well done connecting in......it will help you a lot.

As you will see I don't have Marginal Zone Lymphoma but have lived with and been treated for a different type of Low-grade non-Hodgkin lymphoma.

Living with slow growing NHLs is completely different from living with most other types of cancer.

As you may have seen there are a few types of MZNHL….. Extranodal marginal zone lymphoma (also called MALT lymphoma) Nodal marginal zone lymphoma and Splenic marginal zone lymphoma…… do you know the one you have?

I was on Active Monitoring (Watch and Wait)…… and it took over 14 years before my condition developed to the point where full on treatment was required and that would make a significant difference resulting in long term remission.

Lymphoma Action have a great Lymphoma Action Buddy Service where you can be linked up with someone who has walked the same treatment journey.

They also have a Lymphoma helpline on 0808 808 5555 where Sharon or Nic will be on hand to give you some support - open every week day from 10 till 3.

We are here to help you navigate this ((hugs))

It’s only natural to be scared. It’s not easy but it’s manageable. Good luck with the treatment

Cathy