Hi Steph

Thanks for your reply. I have had little or no response from people with NMZL and  appreciate that there are very few of us out there. Your website link was very helpful, I thank you for that. Will keep on trying to contact those like myself and hope that one of these days I will get a response. Take care.

Linda

Hi Steph

Thanks for your reply. I have had little or no response from people with NMZL and  appreciate that there are very few of us out there. Your website link was very helpful, I thank you for that. Will keep on trying to contact those like myself and hope that one of these days I will get a response. Take care.

Linda

Hi

I am Lisa and new to this forum, i was diagnosed on feb 28th 2017 with nmzl i am at stage 3 , i am on watch & wait, the sweats are getting worse no appitite  tired all the while hope i will soon be able to get some treatment i know it cant be cured but it can be put into remission , i just want to feel myself again, next appt june 7th .

Would love to chat to anybody in the same boat

Lisa

Hi Linda 

My mum has been diagnosed with nodal marginal zone lymphoma and I would love to talk some more. It seems that it is so rare that there are hardly any people with this variant of marginal zone lymphoma.

Sam 

Hi Lisa,

I am am trying to form a mini group of those who have been diagnosed with nodal marginal zone lymphoma so we can share our experiences. 

Please do get in touch

Sam 

Hi JAD

My mum has also recently been diagnosed with nodal MZL and is currently on watch and wait. It would be good to keep in touch.

sam 

Hi JAD,

i am am glad to hear your partner is still on watch and wait - long may it continue. My mum is also stage 3 and I agree the not knowing is very hard. We have a hospital appointment coming up at the end of March and as it gets closer we do feel more nervous. My mum seems well in herself and I hope after the March appt we can all go on holiday. It would be nice to get some sunshine. 

Take care

sam 

I’ve just been diagnosed with this rare lymphoma, I’m being told tomorrow how they are going to treat it but they did warn me it could be 6 months chemo. Has anyone went through the treatment and how did they cope?

I would be glad to join your mini group as there doesn’t seem to be many of us. I was shocked to find I had this but I have had a lot of different illnesses over the years and it looks like I may have found the answer now.