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Hi guys,

A newbie here. Diagnosed with FNHL in July which I'm sure you will all agree was a shock. To date I've received 5 RCVP 1 to go,  and so far been lucky with very little side effects other than sleepless nights immediately after treatment.

I've been through a few posts just being nosey on peoples progress I suppose.

The thing that struck me most on all was the level of support offered, and the willingness to be honest and share experiences. 

Life is never easy and I applaud everyone of you for facing the fear of the unknown head on and helping others in their time of need.

We always think it will never happen to us, I certainly did. However, now I'm here i will always adopt the same level of honesty in anything I share or offer help or advice to others.

Thankyou all .


  • Hi  and a very warm welcome to the online community

    Although I'm not a member of this group I didn't want to just pass by without saying hello!

    I'm sorry to read that you've recently been diagnosed with FNHL and I can understand how shocked you probably were. Good to hear though that your treatment has gone well with little side effects.

    I'm sure the other members of the group will be happy to share their experiences with you in the future.

    When you have a minute, it would be really useful if you could pop something about your journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.


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     "Never regret a day in your life, good days give you happiness, bad days give you experience"

  • Hi and welcome though sorry you have had to join us, I had DLBC which is an aggressive type of lymphoma so different to yours, but we all have similar experiences, having been around for 11 years now this has always been a supportive community and as you have found lots of experiences shared. 

    Sadly since the site was update a while ago we have lost members and others like me have challenges logging in though it is improving as the fix things.

    Hopefully those who are still posting will pop by and say hi, any questions just ask and the sleepless nights will no doubt be due to the steroids, good to see you have found us 


    we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are
  • Hi Brady49,

    Welcome to the place you never wanted to be!  It's always scary to get your diagnosis, but there are far worse diseases and you already know you can cope with the treatment.  Remission is wonderful and worth the hassle.

    I find the patient experience bit here the best thing.  People I've never met tell me things I've never imagined, even after 45 years nursing experience in other areas of health care.  You can't get that from the research papers, but it's so important whether you're a carer or a patient.  

    Best wishes for your progress!