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Nodal Marginal Zone Lymphoma

lindydoll
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Hi I'm Linda I am 66 years old and have had NMZL for the past year and a half. I had RCVP treatment last year and Rituximab and have been in remission now for eleven months. I appreciate that this is a very rare lymphoma but I wondered if there Is anyone suffering from the same disease, I would like to hear your stories.

  • Hi Linda, 

    Welcome to Cancer Chat.

    I'm pleased to hear you have been in remission for eleven months now and I hope it continues. As you have mentioned it is quite rare but I'm sure other members who may have been diagnosed with this type of cancer or have had experience with other lymphomas will post soon to share their stories and experiences with you. In the meantime I have found this website which might be useful as it helps connect people with lymphoma around the UK.

    Do feel free to explore the forum and chat to others Linda. I'm sure they would love to hear from you and find out more about you.

    All the best, 

    Steph, Cancer Chat Moderator

  • Offline

    Hi Steph

    Thanks for your reply. I have had little or no response from people with NMZL and  appreciate that there are very few of us out there. Your website link was very helpful, I thank you for that. Will keep on trying to contact those like myself and hope that one of these days I will get a response. Take care.

    Linda

  • Offline in reply to lindydoll
    Hello , I've been diagnosed with NMZL . I'm at stage 1 , awaiting planning scan the radiotherapy . Would love to speak with someone who has the same thing . Vicky
  • Offline in reply to vickyanne2017

    Hi

    I am Lisa and new to this forum, i was diagnosed on feb 28th 2017 with nmzl i am at stage 3 , i am on watch & wait, the sweats are getting worse no appitite  tired all the while hope i will soon be able to get some treatment i know it cant be cured but it can be put into remission , i just want to feel myself again, next appt june 7th .

    Would love to chat to anybody in the same boat

     

    Lisa

  • Offline in reply to lisa1411
    Hi Lisa Have just seen your post. My partner was diagnosed with NMZL stage 3 last August. No symptoms at all just a lump on neck and currently on watch and wait. Would like to hear how you and any other person with nmzl are getting on. JAD
  • Offline in reply to lindydoll

    Hi Linda 

     

    My mum has been diagnosed with nodal marginal zone lymphoma and I would love to talk some more. It seems that it is so rare that there are hardly any people with this variant of marginal zone lymphoma.

    Sam 

  • Offline in reply to lisa1411

    Hi Lisa,

     

    I am am trying to form a mini group of those who have been diagnosed with nodal marginal zone lymphoma so we can share our experiences. 

    Please do get in touch

    Sam 

  • Offline in reply to JAD

    Hi JAD

     

    My mum has also recently been diagnosed with nodal MZL and is currently on watch and wait. It would be good to keep in touch.

     

    sam 

  • Offline in reply to SPS82
    Hi Sam Yes would be good to keep in touch. My partner is still on watch and wait and has been told it could be years before teatment. Its the not knowing which is hard for us as we both work full time and had hoped to travel.I did ask his consultant about immune therapy but apparently its not yet available for mnzl. Hope your mum is still well. JAD
  • Offline in reply to JAD

    Hi JAD,

     

    i am am glad to hear your partner is still on watch and wait - long may it continue. My mum is also stage 3 and I agree the not knowing is very hard. We have a hospital appointment coming up at the end of March and as it gets closer we do feel more nervous. My mum seems well in herself and I hope after the March appt we can all go on holiday. It would be nice to get some sunshine. 

    Take care

    sam 

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