Follicular lymphoma? Relapse

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Hi all. I was diagnosed in2015 with follicular lymphoma after a very long and distressing time as I am sure lots of you can relate to. I had 6 rounds of rcvp and reached a good remission.  During the last 5 and 1/2 years since treatment finished  I have had periods of time when I have felt quite unwell with similar symptoms to my original ones. I had a ct scan just over a year ago after feeling unwell for several months to be told I was still in remission.  Good but felt I had made a fuss over nothing.  I was sent back to my gp who started me on thyroxine which helped with my fatigue my dose has since been increased. However I am now suffering from same symptoms as before, fatigued, feeling of distension in my abdomen and breathless especially after eating. I am also suffering from sweats day and night and some itching. I know follicular lymphoma can wax and wane but anyone got any idea how long this usually lasts? I have spoken to my specialist nurse and have an upcoming appointment with my consultant (why is it always a 3 week wait!!) I am really worried that there will be nothing to find if I eventually have another scan (no doubt after a further 3 week wait!!) and am left feeling like a hypochondriac once again. Have any of you lovelies had a similar experience?  

Lynne

  • Hi Lynne, well done on navigating and putting your post up.

    Let’s see if there is anyone looking in that can relate to your experience ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • HI Lynne

    I've only just seen your post as I haven't been on the site for a while. I am 3 years into remission with NHFL.  Like you it is truly difficult to live with something incurable,  never knowing when it's going to strike again. Towards the end of last year, I thought I had relapsed with all sorts of symptoms and my Haematologist ordered a precautionary CT scan, which showed a couple of things that needed separate investigations, an MRI and colonoscopy. MRI showed wear and tear in my spine, not Lymphoma and colonoscopy was completely clear. So I am still in remission and can get on with my life and deal with normal ageing related issues.

    I will always remember my Haematologist telling me to tell him everything (symptoms etc.) and he would decide what was important.  That is what your team is for... tell them everything and they can decide if it needs investigating. NHFL is almost treated as a chronic disease, so a 3 week wait to see the consultant is ok, actually pretty good currently. Never worry about discussing your fears with your team, they would rather you tell them not.

    When I was having counselling to deal with exactly how you are feeling, I was told I have a choice on how to approach my remission, worry constantly or try and live my life. Trust in your team to do the worrying for you, so you can stop worrying about worrying.

    I hope your appointment is upbeat and it's not necessary to have a scan.

    Best Wishes

    Tina 

    Courage does not always roar..........

  • Thanks Tina. I am usually very positive about my remission and try to get on with life and do all the things I want to.  I have just posted to the nhl bit 're my appointment so won't repeat it on here. So pleased you are staying in remission. I was planning on at least 10 years and keeping fingers crossed. I think all the lockdown and lack of social interaction is playing with our mental health and certainly making me more anxious about a relapse.  I am going to concentrate on getting fitter and not worrying.  

    Take care and stay healthy. Best wishes

    Lynne