Follicular Cancer 6 months on from first diagnosis

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still a bit confused by everything. Was told I had F Cancer, but then High Grade Non Hodkins Lymphoma.  Is it the same thing.  I have  progressed the 6 months from feeling very poorly, and in hospital, on 3 occasions, to  living a reasonable life of eating small meals, going out a bit etc. People and family keep asking if I am alright now! Keep having blood tests and have tablets and other helpful preventative meds to take.

Am I right in thinking aim is to keep under control but can’t cure! Doctors said I probably had it for 10+ years. Diagnosed as Fibromyalgia then, but they think I had both things and still have!  I had other autoimmune probs when young.

Does anyone have a similar tale to tell.  Could I get clear of it? 

Thank you.

  • 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 various Lymphoma groups.

    I don’t have Follicular Lymphoma (FL) but was diagnosed in 1999 with a rare, incurable but treatable type of Non Hodgkin’s Lymphoma (NHL) Stage 4a so although my Lymphoma ‘type’ is different I know this journey rather well.

    Like yourself I most likely had my type of Low Grade NHL for many years before it was actually diagnosed - for low grade types of NHL like your FL this can be rather normal.

    Also, like my type of Liw Grade NHL your FL is at this point in time incurable but can be controlled and I have talked with many on this community and on other support platforms where people are 20, 30 years into their FL journey and are living a normal life.

    Was told I had F Cancer, but then High Grade Non Hodkins Lymphoma

    This can happen, your FL can transform into a different High Grade type of NHL…… the treatment you received  will most likely have been focused on treating the High Grade with an aim of curing that side of your Lymphoma but your Low Grade will still be there.

    My story is very long and complicated but ai had a rare type (hit my Community name to see my story) but after 14 years keeping my type of NHL under control it became very aggressive so we had to treat it aggressively - I am happy to say that this aggressive outbreak was controlled snd I am now 6 years in remission - not cured but living as normal a life that any 66 year old would Wink

    What was the name of the treatment you had?

    Do also 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 Online Support Groups and indeed a very great Lymphoma Buddy Service where you can be linked up with someone who has walked the same treatment journey.

    You are on a journey so the group is here to walk it with you.

    Do come back with any questions you have or just to chat ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Always around to chat Thumbsup

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Thanks Mike.  I sent you details of my chemo regime. Seems to have suddenly disappeared. Oh well.  Will now set some questions up for Consultant tomorrow as have a telephone call rather then face to face...Re Covid! TC  

  • All the best with your appointment tomorrow and do come back with any questions you have.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Hi Mike - Thehighlander 

    got a few things sorted today.  Got to have a scan, and then blood test every 6 weeks.  No more chemo for the time being! As you say main cancer is Focular Lymphoma, think I might have Low Grade NHL now.  It’s a little way along a fairly long journey but could be so much worse. Thanks  for your help. 

  • Hi again , good that you got some clarity, this helps reduce the noise between the ears. 

    Do check out Lymphoma Action as they do run regular regional online Lymphoma Online Support Groups where you can actually talk with others.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi Mike - Thehighlander 

    My trouble is trying to run before I can walk! Anaemia means tiredness takes over.  Thanks I will look at Lymphoma Action.  Patience is a virtue . 

  • My head Consultant told me that going through treatment was like doing a boxing match and a marathon every day I was on treatment and this was done without any training……. no wonder we get knocked knocked 6 and it takes some time, much longer then we would want or even imagine to get back on n track - Patience is indeed a virtue but setting small achievable goals is the way forward and remember what is not achieved today can be tackled tomorrow.

    You may find it helpful to make a cuppa and have a look at this great paper After Treatment Finishes - Then What? by Dr Peter Harvey as it highlights the post treatment recovery milestones ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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