Hi, I am new here and just wanted to say hello. Probably feel like all "newbies" ie scared!

Hi again  the fear of the unknown is a challenge but once you get your head round this it becomes let noisy between your ears.

I asked this in the other post you replied on but worth putting it up here.

What type of NHL have you?

Are you on any treatments and what are they?

To encourage you I was diagnosed with my type of rare NHL (there are 60 types ) way back in 1999 and I am still here doing great.

Hi thank you so much for this, it is encouraging to see that there is  "life" at the end of it all - it is just having the strength to go through it all that is scary! Your journey sounds an extremely gruelling one!  I dont know what type yet - still waiting for all results and will be having my PET Scan in 2 weeks.  Was in hospital for 2 weeks before this was diagnosed and CT scan and MRI and blood test results show, glands in neck, groin, and spleen and liver involvement.  I have in the last 3 weeks come out in a horrendous all over itchy rash that I have been put on 50mg Prednisolone a day for and am being referred to a Dermatologist.  That is all i know so far!

Hi again, so you have a little more time to get all the information in place but this is not that unusual in a Lymphoma diagnosis and on the whole the delay does not make much difference to results.

You do need to ‘get’ that Lymphoma is very treatable with great results, yes some treatments can be hard work but all do-able.

The other thing to understand that unlike solid tumour cancers like breast, kidney... the stage number put along with your diagnosis is not a bad prognosis. In solid tumour cancer a stage 4 is not good news..... but in Lymphoma stage numbers are used as a guide to what treatments need to be used and for how long.

Please resist from doing random Google searches as you will find some unhelpful information. But do check out Lymphoma Action, a small UK Lymphoma Specific Charity who have lots of up to date information, videos and run regular regional online Lymphoma Zoom support groups and indeed a great Lymphoma Buddy Service.

cannot thank you enough for this

We will be hear as long as you need us

Hi I’m new to the forum but not to NHL I was diagnosed last May, in treatment June to October and told in remission in November. The type of NHL I have is follicular which is technically not ‘curable but treatable. It is usually low grade and often not treated unless it becomes high grade. Mine went a bit rogue and I was pretty ill at the start of treatment (annoyingly I had a persistent cough and you can imagine what that was like at the start of lockdown1!! I was treated like a leper ) I’m feeling so much better than I have for years. In fact my most troubling symptoms went within days of the first chemotherapy starting!!! I’m even liking my new short hair, would never have had the courage to go this short but I’m keeping this way. I am also learning to live in the moment and to enjoy my life, friends and family which is another bonus. I’m very fortunate that I’m retired and have no child dependents so those worries are not there.

you are at the worst stage pre diagnosis, I’d second the Lymphoma Action Group suggestion there’s an active Facebook group, support groups and lots of online information.

Hi , I have follicular NHL as well and just finished treatment (October to March). Now waiting for my scan. Are you having maintenance treatment? Some hospitals (including mine it seems) are not currently offering it due to Covid. I'm just trying to get an idea of what's happening with maintenance around the country.

I wasn’t given a choice, well I guess I could have refused but I was just sent appointments and turned up! It’s a puzzle that units vary so much. I’m lucky that I don’t need to go out to work and have no children at school so I’m happy to keep myself safe. I’m worried that the vaccine won’t work well but will get an antibody test 6 weeks after jab 2 even if I have to pay myself.