Splenic marginal zone lymphoma

Hi there, I think I’ve responded to one of your posts before.I was diagnosed with SMZL in 2014. I had my spleen removed and constantly get infections. Was hospitalised with pneumonia three times. Eventually my consultant put me on a drug called Azithromycin. It has really helped and I don’t get many infectuons now. I’m sorry to hear things aren’t going well for you recently. It is indeed mind blowing. Ask your consultant about this medication. I’m sure it will help. Good luck. Cattie 

Hi there how are you? Yes we have in the pass chatted! I have refused to have my spleen out as I just feel that there is no evidence that it would go to another soft tissue organ. Its a difficult one isn't it to make that decision with very little Information.  Every time I asked a certain question they didn't seem to have an answer and I find myself getting frustrated. I can't seem to find out much about this type of cancer but I have most probably not done a deep enough dive!

I'm so pleased hear you are at last feeling much better but do you have to take this medication permanently? 

Debbie x

Hi Debbie I do t know if you has seen this information Splenic marginal zone lymphoma on the Lymphoma Action website.

Hi  Mike

I did look on there awhile ago. Thank you 

Debbie x

Hi there, I thort we had spoken before. I didn’t really have a choice over my spleen. It was so swollen it had filled my stomach and I cudnt eat. IM touching wood as I say this but I’m better than Ive been for a long time. Now on chemo tablets which seem to be keeping it at bay. The constant infections were so debilitating and depressing. Why they didn’t give me those tablets years ago I just don’t  know. I hope you can get sorted out quickly. Happy to talk anytime you need to. Cattie 

Sorry meant to say yes on the chemo tablets and the Azithromycin.for life xx

Thank you Cattie.

Are you on the  chemo tablets for life or just the antibiotics ? 

I would love to stay In touch 

Debbie

Hi Debbie

yes for life or until they stop working. This is the second lot of tablets. The first lot were a trial and the trial was withdrawn.

please feel free to message me anytime., very happy to answer any questions or even if you just want to vent. It’s a rare cancer as you know so not a lot of info out there and it’s always good to share.

regards

Thank you so much ! It's very reassuring that you are happy to to share. X