Hi, this reply is nothing to do with cancer. When I was younger I suffered for about 20+ years with ulcerative collitus which is very similar to chrones disease.I had all sorts of treatment, none of which worked.I found out purely by chance that mine was caused by e407 karageenan.This is a stabiliser found in most ice cream,cream cheese,some salad creams and various other synthetic cream products.I started looking at packages,cut the e407 out and after a while I was cured! Stress is also a factor of course,and having cancer is stressfull!  I just thought I'd mention this in the hope it might help.

                 All the best, John.

Hi Sue, good luck with the op.And the food!! They told me I'd be in for a week but kicked me out after 3 days, but it was new years eve and I think they wanted the bed!!

                                       All the best John.

My Mum was diagnosed with SMZL in May 2018 aged 58. At that time her spleen was measuring 31cm one of the largest they had seen. They decided to treat her with immunotherapy alone with no chemo. After 4 treatments her bloods started to improve and her spleen was shrinking. A year on and after more immunotherapy her bloods are normal and her spleen measures back to 11cm. She is now on a watch and wait. We have been amazed by her results.

I hope that helps x 

I had my spleen removed April 25. It measured 26cm. No doctor here in Florida offered me that kinda of treatment like your mom had.  I just had rituxan   And the we tried a drug called imbruvica.  I’m till recovering from the surgery.  So far my blood is steady.  But platelets count is very high.  Going back to the hematologist in August.  A wait and watch sort of thing.  Wishing your mom continued success 

SMZL.

Hi all, I'm a bit mystified but happy. Saw my haemotologist a couple of weeks ago.he told me that because the cancer was driven by the spleen,now I've had the splenectomy the cancer left in my bone marrow etc should slowly disappear with no further treatment required. He's signed me off and said that no further blood tests required..I think I will go to my GP and have a blood test at least once a year just for my own peace of mind as he did say there's no 100% guarantee that it wont return. I'm still a bit puzzled as I seem to have been the only person on this forum who wasn't given chemo or retuximab.

    best wishes to all John.

Hi everyone,

My mother (65) was diagnosed with SMZL in April 2019. Prior to treatment, her spleen measured 29.7cm, which was one of the biggest spleens the consultant had seen.

They decided to treat her with 6 cycles of rituximab and bendamustine, which she finished in September.

She just had her post-chemo CT done and the consultant said that now her spleen has shrunken to around 18cm.

We're due to see the consultant again in January 2020, as the consultant said that he cannot comment on her response at the moment as we don't know if that is the most that the spleen can shrink, and that the spleen may still be shrinking post-chemo (it's only been 6 weeks since her final cycle). By January, we should know if the spleen has shrunken further, stayed the same, or slowly gotten bigger again.

Hope everyone is well and wishing you all the best.

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  bèem on watch a wait 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.

I have found it realy hard to find any current research and anyone in a similar position as me to talk to.

Regards

D