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New diagnosis of Extranodal nasal NHL

paulho
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Just been diagnosed with NHL extranodal nk in nose- only second case in 21 years consultant has seen!!! I have had full CT scan, bone marrow tests etc and now waiting to see which way treatment goes. Radiotherapy first or chemotherapy - wait is horrendous although can’t complain how quick they’ve had all tests done -2 weeks total. I don’t know if it’s a good thing or bad thing in that I have had absolutely no symptoms at all apart from the blocked nose. Anyone out there ever experienced this? Supposedly more common in Asia! Advice comments greatly appreciated.

  • I noticed you hadn't had a reply to your post yet Paul so I just wanted to say hi and welcome you to the forum. 

    I haven't found anyone with this exact diagnosis but there are quite a few discussions about NHL in general so hopefully some of those members will pick up on your post and chat with you soon.

    Waiting for things to begin is always tough but hopefully it won't be too much longer until it gets underway and you know which way your treatment is going to go.

    Do let us know how you're getting on when you can Paul and remember we're always here if you need us.

    Kind regards,

    Steph, Cancer Chat Moderator

  • Offline in reply to Moderator Steph

    Some good news in that CT scan shows localised only so radiotherapy first. 6 weeks worth - supposedly lower dosage then 4 week break then chemo to hopefully mop up what’s left. I’ve bern told I’m going to feel like crap. Consultants words I’m going to make you ill! Considering I feel 100% just now not looking forward to that. Does radiotherapy always affect people the same or can you carry on as close to normal? I want to keep working etc as it keeps my mind off the problem.

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