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 again Kelly D ….. I was hang back for others to pick up on your post.
I would say you need to talk this through more with your consultant or if you have a CNS they are often good people to talk with.
Rituximab is a very effective treatment and I had around 600 hrs of Ritux as part of my R-EPOCH and did well during the 6 cycles - 6 days/5 nights on my two IVs for over 120hrs.
You can see that this group is rather slow at the moment t but if you are UK based then do check out the Lymphoma Action.
Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.
I also volunteer with Lymphoma Action and they run regular Support Platforms..... I highly recommend these groups as there is nothing better than talking with other who have walked the journey.
They also have a great Lymphoma Action Buddy Service where people can be linked up with someone who has walked the same treatment journey.
They also have a Lymphoma helpline on 0808 808 5555 where you can talk with someone and get support - open every week day from 10 till 3.
