Hello - newly diagnosed!

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I was diagnosed a month ago with low grade nhl stage 2 with no B symptoms. Waiting for MRI to see if is in my small bowel too. At present I am on active monitoring but my Consultant mentioned having antibody therapy using Rituximab. This will start in the Spring due to winter and covid. Has anyone else been offered this? It seems a good idea if it will delay chemo but on the other hand my lymphoma is particularly low grade and I could carry on like this for ages! I feel a bit of a fraud as I don't need chemo yet but have still found the diagnosis and all the tests have made me anxious.

  • Hi  and welcome to this corner of the Community although always sorry to see folks joining us. I am Mike  and I help out around our Lymphoma groups.

    I don’t have FL but was diagnosed way back in 1999 with another type of incurable but treatable low grade NHL eventually getting to Stage 4a so although my NHL ‘type’ is different I have experienced most types of treatments used but not necessarily the exact same drug mix but understand this journey rather well unfortunately.

    It took me 14 years before I needed chemo but once I started I also had Rituximab as part of the treatment. I had 6 cycles of my treatment R-EPOCH having the treatment for 120hrs each cycle and actually did ok with it all. My journey is rather complicated so hit my Community name to see my story.

    Rituximab belongs to a group of cancer drugs known as monoclonal antibodies. These drugs are sometimes called targeted (biological) therapies. They work by ‘targeting’ specific proteins (receptors) on the surface of cells and are very effective.

    Understanding your condition is very important so you may want to check out Lymphoma Action, a small but very active UK Lymphoma Specific Charity who have lots of good information, videos and run regular regional online Lymphoma support groups and indeed a very great Lymphoma Buddy Service.

    Always around to chat and help out.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Always around to chat. When you were first diagnosed an invisible rusk-sack was put on your back……. Talking with others will help to reduce the ‘stuff’ that will collect in this rusk-sack as the more you collect the harder the journey can be.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Nice to know you are there to chat to - especially with all that you have learnt on your epic journey. Taking a while to get my head around the diagnosis if I'm honest - I was diagnosed with a malignant melanoma 1b six years ago which was excised but this feels worse in a way being a life long cancer!

  • In the early days it’s a challenge to get your head round being told that you have an incurable cancer. Back in 1999/2000 when I was first diagnosed I had a few friends diagnosed with Parkinson’s, MS and type 2 diabetes.

    I have seen the developments in treatments that changed what I was first told that I would never be in any long term remission to being told in Sep 2016 that I was in remission and living a physically and mentally better life than I was living back in late 2013 when my condition kicked off…… on the other hand my friends have deteriorated dramatically over the years with no hope.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • I know I'm lucky really! Could have been a lot worse.  I agree medical treatments are always improving as you are testimony to. Unfortunately my other half was diagnosed with Parkinson's last year -but he is remarkably upbeat and medication has made a terrific difference to his symptoms. I guess I'm trying to keep upbeat for him but struggling inside and wondering what the future holds.