Marginal zone lymphoma

Hi Solo19 and a warm welcome to this corner of the Community although I am sorry to see you joining us. I am Mike and I help out around our various Lymphoma groups. 

I don’t have Marginal Zone NHL but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of T-Cell Low-grade non-Hodgkin lymphoma eventually reaching Stage 4a in late 2013 when my NHL was then presenting as a more aggressive type of T-Cell NHL so although my Lymphoma ‘type’ is different I do appreciate the challenges of living with a slow growing NHL journey rather well.

Waiting for results is challenging…… I have relapsed multiple times over my 25 years so realised that I could throw all the stress in the world at this and it would make no difference to outcomes……. over the years I have had results as quick as a few days but other times results took a few months as there had to be some specialist testing done.

Hi Mike, 

• thanks for your reply, waiting for results is certainly challenging, you are absolutely right all the stress in the world won’t change  the outcome, I just need to make that my mantra, then hopefully get some much needed sleep 

You will have lots of questions buzzing in your head….. take a little time to note them down as you get ready for your next appointment…..

These links will help you get ready for your next appointment…… Information is key to control the noise between the ears.

Top tips for getting the best from your appointments

Questions to ask your medical team about Lymphoma

My story is rather long and complicated See my story but I am over 8.5 years out from my last treatment and I turned 68 last Nov and I am still living a great life.

Solo19, sorry to hear what you have been going through, it’s important to have a good medical team behind you so you can ask them any questions that are of concern.  I know it’s difficult to not worry, but  speak with someone who knows what they are talking about,youll get answers and you will feel less anxious. Send me a friend request if you wish to connect so we can message each other.

I was diagnosed with MALT Lymphoma Stage 1 EA Low Grade on my left parotid gland in Feb 23, after removal of some benign lumps on my left parotid gland by surgery in Jan 2023. I was referred by my surgeon to a haematologist  as he thought the tissue didn’t look right.

I had 8 doses of Rituximab once a week for 8 weeks, between May - July 2023. He felt this was right treatment as I have an underlying autoimmune condition too. I’m now being monitored for two years, every 3 months, with regular blood tests. Had my 3rd monitoring session last month and it showed I was all clear., so a year has passed.

Hope all goes well.