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SMZL survivor from the USA

Chandler
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Hello everyone,

I had my last Rituxan infusion in late 2016, about 1 1/2 years ago. I feel great, I can’t even tell I ever had active stage 4 cancer. It is quite a journey. We are a special group! In the states only about 1 out of 800,000 people annually are diagnosed with SMZL, or approximately 300 total. I am here to support you if you have questions or need to talk!

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    Hi there ...

    That's such great news ... we need good story's on here as it gives others hope ... there's a few others on here pushing the boundaries... so I hope you go from strength to strength and take every new day as a bonus ... take life by both hands and make the most of your future ... 

    So from across the pond (Atlantic)  great to have you on here ... Chrissie   ; ))

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    Fantastic news!

    It's so kind of you to reach out across the waters to give support to people over here.

    I wish you all the best for your future and hope you have some exciting plans to pursue.

    LJx

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    Hi, thank you for posting. I've just been diagnosed with NMZL again quite a rare nhl. About to start R-CVP, a wee bit anxious but it has to be done. How did you find the rituximab infusion, I was told it could take up to six hours the first time I have it. If everything goes ok I will take the chemo tablet in the house and only have to go to hospital once a week for three weeks then a week off. I avoid a paracetamol tablet for a cold so taking all these drugs are freaking me out a bit. I will have to take 70mg of steriods when taking the chemo. What drugs did you take?

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    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.

     

    I read your post and was wondering how you was getting on?

     

    Regards

     

    D

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