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 have been diagnosed with SMZL since July 2009 . I went for a routine check up at my Doctors and I had a high white blood count . I was originally misdiagnosed but after going for a second opinion was told of the SMZL . I had a good period of just monitoring my counts for five years but eventually my spleen became enlarged to such a degree that my Oncologist said I needed treatment . The treatment was a combination of rituximab and bendamustine , treatment was once a month for six months and I continued to work throughout the treatment . My spleen returned to normal and I was given two years of maintenance on retuximab . I have to say that I have felt well throughout my diagnosis. I look at my illness as a chronic disease which could well need retreatment in the future but I don't think it will have a massive effect on my life expectancy. I hope this helps your understanding a little more Regards Neil

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