Hi everyone. I'm Kelly, 47 and diagnosed with SMZL 6 years ago. Like others, mine was found when I was having treatment for something totally unrelated. I've not had any symptoms and have been on watch and wait since the diagnosis.
My white blood cells are at about 82, lymphocytes at 70 and platelets are 247. I have never had any issues with my spleen and it was about 16cm last ultrasound, a few years back.
My blood results have shown about a 10% progression in the 'bad' numbers year on year until my last consultants appointment in November when my WBC's had doubled, and lymphocytes almost the same. Consultant was clear she felt treatment was going to be needed in the next year and that this would be Rituximab rather than doing anything with the spleen. Instead of an annual watch and wait check in, I am due to see her in May and she wants to discuss treatment options then as apparently there may be a trial I can do. But she did say she treats the patient and I was reporting that I was feeling really well, so my understanding is that we wait until that changes.
I live a busy life. I have a director job in a local authority, 3 children and lots of plans for holidays and living life to the full as you do. I am really not very good at being poorly or feeling under par and since my diagnosis, I have been paranoid about being ill and whether this was it, it was finally showing itself. So I have to be careful about managing my anxiety. I am also going through the menopause, which is interesting when you are looking out for B symptoms because fatigue and the sweats are also there with that. I am on HRT and have been for a couple of years and that has certainly helped, until now.
For the last week I have been so tired. Exhausted. I feel like I can't function at work and am regularly taking naps in the afternoon. I ache, my body feels heavy and I am not sleeping well. All of this could be another stage of the menopause of course, but I feel worried its different this time and that the time for treatment and the SMZL to feature as part of my life, is closing in.
My fear is about the treatment and there in lies my question, well - aside from do you think I'm being paranoid or should I bite the bullet and call my consultant? Will Rituximab make me ill? Will I lose my hair? Will I be able to work? Can I still go on holiday afterwards and live a normal life? I'm struggling with the reality of this and could do with hearing some experiences to help me understand what lies ahead.
Thank you in advance. There are some very brave people on this forum. Hopefully by joining I can be brave too.
Hi Kelly D and warm welcome to the Macmillan Online Community although sorry that you had to find us and especially sorry to hear about your Lymphoma diagnosis.
I am Mike and I help out around our Lymphoma groups. I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable 'other' type of Low-grade non-Hodgkin lymphoma (CTCL) eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.
When you say SMZL you are referring to Splenic Marginal Zone Lymphoma?
The New to Community is like our reception desk where we look to direct you to the best part of the Community for you to get support. The Community is divided into dedicated Cancer Support Groups (Discussion Rooms) so can I recommend you join and post in our dedicated Non Hodgkin's Lymphoma support group. This is a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.
To connect in with the group click on this link 
General Non Hodgkin's Lymphoma
......... then once the group page opens click on “Click to Join” when the black banner appears or “Join” under “Group Tools” (this all depends on the device you are using)
You can then put up your own post when you’re ready by clicking “+new” or “+” in the top right next to the group title. You can copy and paste the text from this post into your new post.
I will keep an eye open for you in the group and I will be able to help you out further.
