Non hogkins lymphoma follicular

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Newly diagnosed 26 th September 

on watch and wait. Really struggling especially this week

sleep affected. Appetite affected been pushing through this week

no energy

panicked me when I got weighed and lost a stone in 2 weeks

How do people cope

next check up end of January 

  • Hi again  and welcome across to this little corner of the Community.

    As I said in my reply to your post in the New to Community section I have lived with and been treated for my type of rarLow-grade non-Hodgkin lymphoma for over 24 years……. your Follicular Lymphoma is also one of the many types of Low Grade NHL and is actually the most common in that category.

    Being put on Active Monitoring (Watch and Wait)  is actually very common for Low Grade NHLs because of how slow the condition grows.

    I was basically on Active Monitoring for about 14 years before my condition progressed to the point it needed full on treatment…… I continued to teach a full timetable in a Further Education College and strived to live as normal a life as possible. Yes I was open to infections over the winter as my immune system was continually fighting my Lymphoma so this opened me up to infections.

    Living with a Low Grade NHL is seen in the same light as living with many other chronic illnesses.

    As hard as it us, you have to develop the ability to live as a good as life as possible until it comes time to move onto treatment……. for some that can be months….. for others it can be years.

    It is important to understand that when treatment is required, the treatments available are very effective.

    Happy to answer your questions or just to chat more.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Good afternoon all yes I'm back unfortunately my lymphoma has come back after plus years  not the best Xmas present ever but I have to deal with it for those people in my situation how was it for you guys I would also like to say thanks to an amazing bunch of people who helped me 1st time around you know who you are  any advice will be taken on board many thanks  carl/clecker

  • Hi again Carl  but sorry to hear your news.

    As you know I have a different type of Low Grade NHL…… but I do know what it’s like to deal with Relapse as I relapsed multiple times over my first 15 years with the longest remission during the 15 years being 9 months….. but my last treatment was Oct 2015 and I remain in remission to this day so this can be done.

    The way to move this forward will need your clinical team to search through the tools in their tool box and get this back on track.

    These are some Questions about relapse that you may want to look to get answers fir.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Thanks  for information I'll keep you updated ps have a wonderful healthy new year all 

  • Hiya I was diagnosed in march of 2022, it's weird and confusing still at this stage but it will get a little easier. I also lost over a stone at first with all the test they needed from the hospital, my body and mind was under so much stress, hopefully yours will come back if you need it to. For me dealing with it is keep my self occupied and organised, chaos will make it worse and bring you back to thinking about the future, when or where it might start again, the tidiness will never go completely, my tummy aches are not that great either. Just pace your self that day. I work part time now, which helps a lot, I know some cannot do this, due to financial reasons, but McMillan can help you with a form for reasonable adjustments at work, to get the support needed. Planning is a headache as we do not know our predicament future, however I can't put anything off anymore and I am now going on holiday with a good itinerary to make this less confusing and stressful and all the plans in place. I have someone coming with me that understands my condition and is patient with everyday tasks. I had a problem with insurance for travels which was upsetting, however  talking with Macmillan and perseverance on the web I found the perfect insurance which I will share and post on the travel form for us FL's traveling. I hope this helps you in some sort of way. 

  • Hi  and a warm welcome to this little corner of the Community.

    As you see I have been living with and been treated for my type of very rare Low Grade NHL…… but I am still here living a great life.

    Always around to chat.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge