Hello

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I was  diagnosed with follicular lymphoma 4 weeks ago and my emotions are all over the place.  I am 73 with a very positive attitude but I'm shell shocked at the moment.  I have something called Sjogren's syndrome and there is a 5% chance of developing lymphoma.  I hit the jackpot big time!  My lymph nodes have been getting larger year by year but in May I had a large swelling in my armpit and knew what that meant.  After a biopsy it was confirmed.  I am very active, sing in 4 choirs, volunteer and do a lot things with u3a so life is very busy.  I start chemo next week and although my head tells me I will be fine my heart tells me otherwise!  I know I will be ok at the end of it all but it's a journey none of us wanted to take..

  • 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 but I was diagnosed way back in 1999 at 43 with a rare, also incurable but treatable type of Low-grade non-Hodgkin lymphoma eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.

    It's unfortunate that you had Sjogren's Syndrome..... but in reality, with Lymphoma being the fifth most common type of cancer in the UK (after breast, lung, colon and prostate cancers) so the chances of you actually developing your FL was most likely high as Sjogren's is only one trigger........ but as a way of encouragement FL is the most common type of Low Grade NHL and things brings the availability of treatments that are tried and tested..... providing great results.

    Do you know the 'exact' name of the regime you are having? (R-CHOP?)

    My type is a very rare type (7 in a million) so this brings no end of problems and challenges........ but I am 7 years 8 months out from my last treatment, I turned 67 last Nov and living a great life.

    You need to see going through treatment as a temporary interruption to your life..... I eventually had to have some significant treatments.... my main chemo in late 2013 into early 2014 was R-EPOCH the big brother of R-CHOP and had me in hospital for 6 days/5 nights on my 2 IV pumps 24/7 for over 120 hrs for each of my 6 cycles...... but the treatment was very effective......... and honestly i did ok with it...... and I have sat many times in the ward/treatment room with others much older than me....... some in their late 80s who have went through similar treatment and done well.

    The treatment journey can be ever so different........ if we line up 100 people on the same treatment for the same NHL you will get 100 different stories...... as the Side Effects of Treatments can be ever so different.

    Nausea may be a challenge, but remember you must not to suffer in silence as there are lots of tools available - but your team need to know how you are getting on as at times it is trial and error to get the right one........ I was never sick during my chemo.

    Cancer-related fatigue may well build up over time so take each day as it comes but at the same time keep some activity going as this does actually help overcome some of the fatigue..... the less you do the longer your recovery.

    There is a reaRisk of infection so care needs to be taken to control infection contacts. Generally it takes about 48 to 72 hours for the body to break down and/or get rid of most chemo drugs. But the effects of the chemo on growth areas and your general immune system will last for weeks and is important to remember that he may well be more open to infections at about days 7-14 as this tends to be the window when our immune system is at its lowest……. then the body recovers in time for your next cycle….. but the more chemo you have the longer the recovery can take so by the end of treatment it could take a few months this to recover completely.

    I was given this simple rule for keeping eye on infections…… If my temperature is 37.5°C, repeat in one hour. If my temperature has increased, whether I feel unwell or not, I must contact the hospital.

    I would also highlight the importance of drinking lots of water (the aim is 2 liters every day) as this will flush out all the toxins released by the chemo, protects the kidneys and keeps him well hydrated.

    It is VERY important to have accurate contact information/names/numbers for reporting in issues especially during out of hours and weekends.

    This link will help you get ready for your treatment as it's a collection of suggestions from people who have been through treatment and are things that helped them during treatment...... Top Tips for the day of your Chemotherapy

    Always around to help more or just to chat ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Hi . Welcome to the group, although like all of us we'd probably prefer NOT to be a position to join.  

    As The Highlander says it might be good to know your treatment name to help you hook up with others on the same path now or who have completed their treatment past.

    My story is that I had a diagnosis of Follicular in March 2023 and went directly into treatment. The treatment I am having is O CHOP. I start the sixth cycle on 14/7 and this is followed by 2 further cycles of just the "O" I believe.

    It has not been too bad although I would admit to cumulative fatigue.

    I hope you are soon on the way to recovery. 

    TDx