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.

Hi, how are you now, I asked to join the group but unfortunately nothing came about it. It’s a pity as there doesn’t seem to be a lot of us out there. What kind of treatment did you have? I had R-CVP and finished my treatment in November. My doctor was happily telling me on my follow up appointment that it’s not curable but hopefully controllable. She found another lump in my neck and sent me for X-rays, bloods an an urgent biopsy. I had this on Thursday so I’m at the waiting game again. She said it’s very unusual to come back so quickly.  As there is not so much research done on nmzl, who knows. My mind is going into overdrive atm. 

Hi everybody my names Dave and I was diagnosed with stage 4b nmzl in 2014. After 6 bouts of chemo that didn't work, they removed my spleen. It's been almost 5 years and I'm still here. It's been hard. I've been in hospital so many times I've lost count. 

But

I've learnt to live with it  The fact that it will come back bothers me (terrifys me) but life goes on 

Hi, thanks for taking the time to reply, I’m so pleased you are at the five year mark. I now have been told I have a suspicious biopsy in my submandibular gland but my doctor doesn’t think it’s in lymph nodes. I don’t see her for another week so it’s another wait again for me. One thing after the other. It is a worry living with this and wondering when or if it will come back. My confidence has been shaken having to cope with this so soon after finishing treatment . If I get the all clear I will be over the moon. Best wishes to all x

Hi scones i went through the what ifs stage just after my treatment as well. It seemed everything was a sign it was back. My local doctor had me convinced at one stage it was back. I was on so many different medications I believed her. But my oncologist set me straight. Yes it's incurable but it's unlikely to kill you. Try not to worry about it until it does. I believe him and it's been almost 5 years now. 2 years of stressing and 3 years of living. I consider myself a survivor not a victim and that helps me get through the what ifs. I beat it before I can beat it again. 

My advice stay away from doctor google listen to your oncologist and your body cause they know best. There is more research being done now and there are lots of new drugs available so who knows one day they might have s cure

i pray your results were negative and if you have questions don't be afraid to ask.  Amazing people on this site they got me through a terrible stage in my life.

please look after yourself and try not to let the what ifs win.

Dave

Hi, thank you for your kind reply. Unfortunately I saw my haematologist yesterday and she gave me the bad news that it’s back. I can’t quite take it in yet. It’s too soon for more chemo and as I feel ok atm and she has put me on active watch and wait. She said the X-ray showed the nodes I had at each side of my lungs are also back. I am happy with the watch and wait decision but just scared that it came back after 6 weeks. I see her in July again or sooner if I get any B symptoms. I’m going on holiday in May so just going to enjoy myself and try and forget about it.

thank you again for your reply.