Hi
I am a 37 year old male and was diagnosed with SMZL last July.
My symptoms at the time were persistent mulcers and upon investigation I was found to have a high WBC count.
My spleen was enlarged at 17cm and I have bone marrow involvement.
I for the past 12months I have bèen on a watch a wait programme with regular blood tests. My WBC count has steadily risen to 34 with all other counts stable.
I know I will need treatment in the future and feel fine at the moment where I am able to exercise and carry out my normal daily routines.
Over the past year I have found it realy hard to find any current research on SMZL and anyone in a similar position as me to talk to at 37 a realise I am very young to have a form of NHL nevermind a rare type such as SMZL. Hopefully someone may get in touch.
Hi there
My husband was diagnosed with SMZL in Nov 2015 when he was 45 - you’re quite right that there isn’t much out there on this particular NHL as it’s a rare one (less than 2%of NHL diagnoses if I recall correctly) and what info is out there doesn’t tend to be particularly positive. When my husband was diagnosed, the team admitted that they hadn’t dealt with it before. And it has kinda stayed like that since. He had treatment straight away as his bone marrow was 100% infiltrated and he had 18 in total. His cancer remains active but he keeps ok. He returned to work after 17 mths to a less active job and he now works part time to accommodate the persistent fatigue. Considering how ill he was at diagnosis, we have come through one heck of a storm and continue to look forward. Please let me know if I can do anything else- and know our house sends every good wish to you and yours
Hi, @dspoc82, a great big welcome to our forum, I cannot help with your particular diagnosis, but please do not let that stop you contributing to the forum. We often share similar fears, thoughts, feelings, questions, symptoms and practicalities. Blood cancers seem to know no age or fitness barriers. We are all here to support you and you can contact the wonderful Blood Cancer UK Support Services Team on 0808 2080 888 10am-7pm Monday-Friday and 10am to 1pm Saturday and Sunday or via email at support@bloodcancer.org.uk if you need to. How have you been during isolation?
A warm welcome to the forum @dspoc82. I just want to echo what Erica said and let you know that our support line is here for you if there’s ever anything we can do to support you at any point. How have you been coping over the last few months?
Hi there. I was diagnosed a couple of months ago with SMZL with low bone marrow involvement and have had 4 cycles of Retuximab. Spleen has shrunk quite a bit and bloods have improved. I’m feeling good which is lucky as we have just moved into a rented house so that we can knock down our bungalow and build a new house. I’m 66 and this was a complete shock - I went to the doctor to have my arthritis looked at! I am now being advised to have a splenectomy as I am reasonably fit and well and it should give me 5 - 10 years in remission. I haven’t seen much information about SMZL either so do keep in touch. There are a much smaller number of us with this than other types of lymphoma so anything we can share would be great. All best wishes as you continue on this journey.
Hi @CarolO, a great big welcome and I am so glad that you have found others with SMZL. Your diagnosis must have been a shock as you only went to the doctor to have your arthritis looked at. No matter what our blood cancer is we all support each other in this forum and very often share similar fears, thoughts, feelings, questions and practicalities. If you ever need to chat to someone you can contact the wonderful Blood Cancer UK Support Services Team on 0808 2080 888 10am-7pm Monday-Friday and 10am to 1pm Saturday and Sunday or via email at support@bloodcancer.org.uk. So you have just moved into rented accommodation to knock down your bungalow and build a new house, quite a project and exciting, we await hearing how you are and how the build goes.
Thank you Erica. I appreciate the offer of support and the availability of the forum to exchange views and information. It’s good to know I’m not alone, particularly as this form of lymphoma is not as common as others.
Hi Jude/Carol
Thankyou for contributing, I hope things are as well as they can be for your husband Jude and yourself Carol.
I continue to look for information on SMZL and am finding it increasingly hard.
I have been in touch with a couple of consultants in the uk that specialise in Marginal Zone Lymphoma and have been involved research in SMZL. I am hoping and hear something back even if it’s some direction from them on the best place to find SMZL information and current research and trials.
If I hear anything I will let you know.
On my front my blood count went back down to 28 in July which was great news but I have since found lumps in my neck and groin which have been confirmed through an MRI scan as Lymphodenpathy .
I am waiting to hear further from the consultant and hoping that it’s not to significant that warrants treatment! Fingers crossed!!!
Thanks Dan. Would be really interested in anything you find out. Sorry to hear that you have found what might be a further problem. Fingers crossed it is nothing significant. Keep strong. X