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 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.

Hi scones

I'm sorry to hear that I really am. 

words cannot express how I feel. 

I truly am sorry

Dave

Thank you for your reply. Apologies for not responding but I had a bereavement recently so life has been difficult. I’m seeing the docs next week and following week. I’m feeling tired but otherwise well. No treatment at the moment but have had lots of chemo and a stem cell transplant for Diffuse large B cell lymphoma in the past. 

Thank you for your reply. Apologies for not responding but I had a bereavement recently so life has been difficult. I’m seeing the docs next week and following week. I’m feeling tired but otherwise well. No treatment at the moment but have had lots of chemo and a stem cell transplant for Diffuse large B cell lymphoma in the past. 

Hi, thanks for reply, you have been through a lot lately, I hope you keep well and life gets a bit easier. I’m just trying to keep upbeat atm, what else can we do, getting used to my diagnosis and trying to cope. Hey! Today the sun is shining, my family all coming down for Easter bbq, I’m going to enjoy life and I hope you do too. Take care.

Hi Everyone. I'm new to this group - only just discovered you all, and am so sorry to read some of your stories. Mine is probably quite similar ....  autumn of 2017 I'd lost some weight [great I thought ...] was sweating a lot [wimmins troubles???], was rather breathless [age I thought ...] so I went for a check-up. Within a week I was in hospital and had 2.5litres of fluid drained from my lungs. It turned out to be lymphatic fluid and I was diagnosed with stage 4 NMZL NHL in Nov 2017. Weird but I've only ever had  minimal swollen neck, groin and armpit glands altho it had spread everywhere. I had RCVP for 5 months which seems to have done a good job and since September 2018 have been on Rituximab maintence therapy. I had lots of side effects from the RCVP that haven't all gone but all in all I'm pretty well.... just get tired. 

I've been to a couple of Lymphoma Action meetings but no-one seems to have the same as me so its a bit difficult to work out what happens next ..... I'm very happy to chat to anyone. But hey, as Scones says, its a glorious day, we have a family bbq tomorrow and spring is here.  Happy Easter everyone.

Hi Lesley, I hope you are well. Can I ask if your symptoms came back in order that they put you on maintenance with retuximab. They did discuss maintenance with me but said they don’t usually do it for NMZL. I was a bit confused and especially as after six weeks in remission it came back. Maybe if I had retuximab I might still be in remission, who knows?. Hope you are having a Happy Easter, my bbq went well x

Hi Scones. Thanks for getting back so fast. No, none of my symptoms had returned, the docs waited for 3 months after the RCVP had ended to arrange the scans then when the news was good they suggested I go on maintenance every 8 weeks for 2 years straight away. By the time it was all arranged it was 6 months after the end of the RCVP.  I was told that NMZL is similar to Follicular Lymphoma and as maintenance therapy works well for FL they agreed I should have it.  I suspect that because of the way my NHL showed itself initially I am at quite high risk of relapse. Hope this helps?  Glad you had a good bbq - weather looking good for tomorrow. x

Hi LesleyR8

Interesting post. Any side effects from maintenance Rituximab? 

I’m hoping to go to the Lymphoma action national conference in London on 11th May. Anyone else going? Would be great to meet up. 

Hi ngr1958

Thanks for the post. Side effects from maintenance Rituximab? Difficult question to answer as things are so vague and ill-defined. Oncs say there should be not much but I am def much more tired than before alongside some nausea and ongoing severe constipation [sorry ....] 

Regretably I won't get to the conference this year.

Hi Lesley, I think fatigue and constipation are part and parcel of this treatment, I had both on RCVP, I just went with what my body was telling me. Isn’t it strange how all doctors treat us differently.? I truly believe if they had given me retuximab as a maintenance I may well still be in remission but they said nmzl doesn’t benefit from it. I have auto immune problems as well and my rheumatologist and haematologist discussed my treatment after chemo, so far I seem to be on zero as they have both been waiting so long on these results to come through, it was maybe retuximab but decided to wait and just put me back on hydroxychloroquine again. Our fate seems to be in the hands of these doctors and I’m not complaining as they have been very good but seem very surprised my cancer has come back so quickly. I am in Scotland, if I hadn’t been going on holiday I would have liked to have attended the conference, I think you learn a lot. Maybe next time. Wish you all the best.

Hi there is a group on Facebook called "marginal zone lymphoma" search for it and you can be added.