Hi everyone,
I'm new to this forum and trying to find a few answer. First I'll tell you a bit about my story and where I'm at.
I was diagnosed with SMZL in July 21. I had had a CT scan to look for another condition (which fortunately turn out to be negative) how ever the CT scan showed I had an enlarge spleen of 18cm. I was referred to a Haematologist, he told me I had SMZL and I was put on 'watch and wait'. I have a follow up appointment and bloods taken every 3 months..
On 2nd June this year I went to the hospital, after an examination, the registrar said my spleen had grown to 4 fingers wide, she ordered another CT scan, and I was to go back a month later to discuss the results. I went back a month late, and actually saw the main consultant I was under. The scan results had not come back, he said yes my spleen had grown, and would grow more.I was not having any B symptoms. bloods were at a level he'd expect, he would see me in 3 months.
A month later I received my letter, I get a letter after each visit, it's also the same letter that is on my GP's records.
The scan had come back, I had sub cm cervical nodes (not classed as cancerous till they reach 1cm, but larger than normal,) a 2.3cm node in my left axilla and my spleen had gone from 18cm to 21cm. The lymphoma had spread. The letter said follow up appointment in 3 months. I was not happy about this, so contacted my consultants secretary, my appointment was brought forward by a month.
I went back to the hospital on 31st July. the registrar examined my spleen, said yes it had grown, he didn't examine my neck or my axilla, he asked me if I was having B symptoms, which I said no I wasn't, I am having a few daytime sweat, some I have put down to the current weather, my spleen is swollen and pushing on my stomach,I get terrible bloating in the evenings, this is not helped, as I have a reflux problem.
It seems as if I've got to get the B symptoms before I can have treatment yet the spleen has grown and my lymph nodes are now affected, I read it's actually rare for it to spread to the lymph nodes. Can anyone with this type of lymphoma tell me if they had the B symptoms or any other type of symptoms. Thank you to anyone who takes the time to reply.
Hi brandysour and a warm welcome to this corner of the Community although I am always sorry to see folks joining us.
I am Mike and I help out around our various Lymphoma groups. I don’t have Splenic Marginal Zone Lymphoma but I was diagnosed way back in 1999 with another type of Low Grade NHL... but my CTCL is rather rare, incurable but treatable..... eventually reaching Stage 4a so although my Lymphoma type’ is different I do appreciate the challenges of this journey rather well.
Active Monitoring (Watch and Wait) is a rather normal route for Low Grade NHLs. I never had B symptoms and it took close of 14 years before I needed full on treatments....... although I was having skin treatments as my type of NHL was as though I had very bad Psoriasis..... but eventually it became aggressive and needed to be treated aggressively ( you can hit my community name to see my story)
Splenic MZL develops slowly. Treatment is often successful, but the lymphoma usually relapses (comes back) and needs more treatment to keep it under control. Most people live with this type of lymphoma for many years. You might have periods when you feel well and don’t need treatment, and other periods when your symptoms get worse and you need more treatment.
Your consultant won't necessarily wait until you have B symptoms and will look at all your presentation areas and look to move to treatment for when it will be most effective.
Let's look for some of the group members with this type of NHL to pick up on your post. You can also use the search 
tool near the top, put in SMZL or Splenic Marginal Zone Lymphoma then select 'Anywhere' and this will bring up all the older posts and as always you can hit reply and see if the meneras are still using the site.
Always around to help more or just to chat
I am fine, now coming up to 7 years out from my last treatment and remain in remission.
I always highlight the Lymphoma Action website. Lymphoma Action is a small but very active UK Lymphoma Specific Charity who have lots of good reliable information, videos and run regular Lymphoma Online Support Groups for patients...... 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 you can be linked up with someone who has has the same type of NHL as you. They also have a Lymphoma helpline on 0808 808 5555 where Sharon or Nic will be on hand to give you some support - open every week day from 10 till 3.
With over 60 different types and subtypes of Lymphoma there us going to be rare ones so it makes that touch harder to talk with others on the same journey.
It took me about 17 years to actually find and talk with someone with my type of CTCL and he turned out to be sitting next me at a Maggie's Centre Heamatology Support Group 
Do search the support platforms in Lymphoma Action, I have connected with more people with my condition there as well.
Always around to chat.
