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

    I don’t have Follicular Lymphoma(FL) but I was diagnosed back in 1999 with another type of (rare) low grade NHL Stage 4a so although my Lymphoma ‘type’ is different I appreciate the challenges of this journey well.

    FL is the most common type of Low Grade NHL so this means there are lots of treatments available as and when they are required.

    Watch and Wait or as I prefer to call this - Active Monitoring is rather normal for FL and I have talk with many folks who have been at this stage for years with no treatment living a normal life.

    I was basically on Active Monitoring for 14 years (although I had to have skin treatments - yes very complicated) as sometimes, lymphoma doesn’t need treatment straightaway. Instead active monitoring: regular appointments to check on his lymphoma is done until he needs treatment.

    I am assuming that you have had a PET or CT scan done as this will show where it’s presenting……I was 79% covered in tumours before I reached the ‘point’ of treatment.

    At this early stage you need to understand the Lymphoma is just NOT like all the other sold tumour cancers like Lung, Kidney, Breast...... I was stage 4 back in 2013 but I am still around doing great and having no treatment.

    The BOLD links above are taken from the Lymphoma Action website. Lymphoma Action is a small but very active UK Lymphoma Specific Charity who have lots of good reliable information, videos and run regular Regional Lymphoma Online Support Groups (Including a groups for Family and Carers Only) and a great Lymphoma Buddy Service where your husband can be linked up with someone who has walked the same treatment journey.

    You will have lots of questions so list them and we will do our best to help you navigate this journey ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • LJWMs post in the wrong group so it was moved Thumbsup

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge