Splenic marginal zone lymphoma

Hi again Roxyrock and well done navigating to our little corner.

We have had a number of folks with various types of Marginal Zone so let’s see if they are still looking in.

You could put a search in using the search tool near the top and click reply to the posts.

Marginal Zone on the whole is classed as a low grade, slow growing type of NHL. I was diagnosed with my type back in 1999 and I am still around doing well....although I did have a long treatment journey (see my profile)

The link below will take you to MZ info on the Lymphoma Action site. LA a small UK Lymphoma Charity that has lots of information and run regular online Lymphoma Zoom support groups and indeed a great Lymphoma Buddy Service.

I was basically on Active Monitoring (Watch and Wait) for about 14 years, yes I was having skin treatments as my type of NHL was on my skin but it took that amount of time before we had to use the big gun treatments.

Happy to talk at any time and answer question as best as we can.

lymphoma-action.org.uk/.../splenic-marginal-zone-lymphoma

Thank you Mike. You have be a great help!

Hi, I had the same problem, my spleen swelled to the size of a baby and I had to have a splenectomy. This cured my spleen problems, but they discovered a lymphoma on the removed spleen. I had a course of chemotherapy and went into remission for 18 months. It has been discovered that it is now returning and I am also on watch and wait. Thankfully the chemotherapy did not give me any problems and my life has been quite normal since the splenectomy. You are correct to be positive and carry on as normal, it has worked for me so far

stay optimistic

Hello there

Thank you so much foryour kind words and  sharing your story . I'm sorry to hear that it has returned but like you I believe positively is a really good place to be. 

Kind regards 

Hello, I know it has been awhile since you posted.  I am a 68 year old male diagnosed 10 years ago with SMZL.  My spleen was grossly enlarged so had splenectomy.  I have been observed over that period with minimal symptoms.  After treatment last year with Rituxan due to rising IGM and white cell all settled down.  IGM is now up again so about to start chemo/rituxan combined

Hi, I have just had retuximab as well a few weeks ago, I am waiting for a scan now before seeing the Haematolgist in November.  Just hope its done its job.  These things never go away do they, just simmer under the surface.

Hi there, I've now also finished and I have blood tests Friday and an appointment with my consultant on the 12th October for results and see if its gone into remission! Hopefully for a very long time.

How are you feeling? Do you feel better?

Fingers crossed we both get the best results possible. 

Kind regards

Strangely enough I feel good at the moment, but still nervous about the scan

Hi Roxyrock,

I hope you are keeping well.

My mum (68) was diagnosed with SMZL in 2019, and had 6 cycles of rituximab and bendamustine, which shrunk her spleen from 29.7cm to 18.3cm. In mid-2020, her spleen was 16.7cm.

Unfortunately, she has since relapsed, and now her spleen is around 22cm. They are currently planning to give her radiotherapy to shrink the spleen, and then perform a splenectomy.

Wishing you all the best,

mh786

Hello there

Thank you so much for asking, I'm doing well. Still on watch and wait. My last check up was 4 weeks ago and all bloods were as they should be.

Sorry to hear about your Mum. Is it the only answer to remove her spleen? Can they not just treat again? It's a big thing to know whats the best route. The spleen is a big part of our immune system.  My consultant didn't want to remove mine . The largest it got to for me was 22cm, after treatment it was back to its normal size of around 7 cm.

Wishing you and your mum all the best. Thinking of you xx