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. 

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.