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

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 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. 

Hi all!

My mum was diagnosed with nmzl 4 years ago along with diffuse large b....rarest with the most common. She was diagnosed at stage 4, had Rchop chemo which didn't work so she was given a stem cell transplant which, in all honesty, was horrific to watch. She was so ill but actually had the most mild of side effects. The stem cell transplant didn't seem to work either so she was given radiotherapy....we were told to expect the worst and 6 months was a timescale.....that was 2 and a half years ago! She has defied all odds so far and i guess the rarity means they don't really know how it will behave. Recently she has had to get radiotherapy again and just waiting on follow-up c.t (its not looking too positive) but her mind over matter attitude has got her this far. Keep fighting as time is all we need for new treatments to be developed!

Xx

Hi, thank you for your post, I'm sorry to hear about your mum, they do say it's a low grade lymphoma, but I think I've had this for quite a while. I've had my first round of C-RVP, feeling not to bad but taking it one day at a time. Just wish more research was done with it. My consultant has told me if after my treatment it did come back they can try again which doesn't inspire me with confidence. It's almost as if they are expecting it to come back. We shall wait and see, mine is stage 3 atm so I'm just keeping my fingers crossed the chemo will work. 

Could I join your group please? I was diagnosed withN NMZL in October 2018. First diagnosed with DLBCL in 2012 and have had lots of treatment. Now under active surveillance.