Hi Marina,

I am sorry to hear of your diagnosis. I notice that not many people with similar experience have come forward to talk to you. Why not type in SMZL into the search the forum facility situated on the blue bar at the top of this page. This should find some people with similar problems and, once you've found a few names, perhaps you could post to them asking for advice.

I am afraid that I am of no help in that area. I have had two bouts of primary cancer and know more about that - I've had cancer for 7 years. Have you asked the nurses on this site if they can recommend where you might find information on this type of cancer? You can either post on the "Ask the Nurses" section or phone them Freephone to discuss your sumpstoms and prognosis.

Have you been given a treatment plan yet?

I hope that someone comes along soon to help you out.

Kind regards,

Jolamine xx

Hallo Marina,

I was diagnozed in Januray 2015 with SMZL stage IV, but I think I have had it since beginning 2013. In February 2015 I had six injection with Ritubimax and I responden well. I live a normal life, with no sick leave. My goal is to keep my spleen as long as possible. Therefore I try to improve my immune system by eating low carb/paleo, practice TM and train regulary. So far so good.

Hi Marina,

i'm Dutch so my English will be not so correct sometimes, hope you can read it.

In october 2018 i was diagnosed with stage IV SMZL. I was searching for companions around the world who want to talk about it. But i found out that not that many people were on the world wide web to discus this type of cancer. So it was i relief to find you're question and that the moderators let me in whilst i'm living in the Netherlands. I see that you not responded for a long while now. Hope everything is ok. First let me tell you something about me. I'm a 53 year old woman, mother of three beautifull children, having a loving partner. I'm a pharmasist and work 37 hours a week. If i didn't went to see a doctor after 6 weeks of a cold i still didn't found out that i was this sick. So from living a harmless life with no cancer i'm living i life now with cancer. Such a strange awareness. But i still feel good and hope this will last a long time. 

I'm in a "wait and see" phase. My spleen was the last time 14cm. and my bonemarrow contains 20% cancer.

Hope that somebody with the same type can tell me how this illness developes with them. I read that this type normally shows more in elderly men. And that the prognosis is 8-10 years life. I wonder how this is with people from my age. 

Best regards,

Jacqueline

Hi Swoozie,

Congratulations on your faultless English. I certainly couldn't do the same in Dutch!

A very warm welcome to our cmmunity, although I'm sorry for the reason that you've joined us. I notice that Neillio has only contributed once on the forum and, that was quite a while ago (August 2017), so he may no longer be looking at this site.

I am glad to hear that you are still feeling good and that you are in a "wait and see phase". I am afraid that I cannot help with your SMZL (Splenic Marginal Zone Lymphoma), as I have had 2 bouts of breast cancer and know nothing about your condition. However, you might find our search facility helpful, as there are quite a number of contributions about this condition.

If you go to the search engine on the blue banner at the top of this page and enter SMZL into the box, then click, this will bring up previous posts on this topic.

I hope that you find this helpful. Do please keep in touch and let us know how you get on. We are always here for you.

Kind regards,

Jolamine xx

Hi Swoozie, sorry for the long delay. I am so sorry to hear about your recent diagnosis. It is such a shock. I am on  cancer retreat high in the mountains with very little reception. I’ll respond when I’m back in civilization! I am a part of an SMZL group that I can invite you to join. It is filled with kindness , research and compassion.

hugs to you

Hi Jolamine,

:) So happy that my English is readable.

Thank you for the warm welcome. There is so much information in this forum. I'm so glad that i'm able to read all this. We're keep in touch.

Hi Marina,

i'll hope you have a good time in the mountains.

And so nice from you to invite me to the SMZL group. I'd would love to join!

A big hug back , until later!

Hi Marina

I am a 37 year old male and was diagnosed with SMZL last July.

I am finding it difficult to find detailed information about our condition and also people in a similar situation as me.

I would be very grateful for information on the group you have spoke about above.

I hope your ok

Dan

Hi Dan,

glad you asked this here.

I hope there is a way that we can get in contact with each other because we are not allowed to use our emailadres in the tekst.

Marina if you are out there, i hope you find i way, to give the information again that was removed from this page to get in contact with each other.

Thanks for asking Dan!

Regards,

Jacqueline