Follicular NHL

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HI.  I have joined this group as it is more pertaining to myself, and I can also view the main website which is extremely useful.

I was diagnosed with the above some 5 years ago - I was on the watch and wait system, as apparently, they do not want to treat unless it is absolutely necessary.  I was 69 last November and in August felt unwell, and moving on and I am this month on my 5th cycle of chemotherapy (two drugs) one which is the cause of hair loss.  Some people might just find it thinning I believe.  All I can say, is, that I have known for sometime about this condition, but because I was told all the time my bloods were good, and so forth, I never had any more scans.  Then I suppose COVID stopped the regular "Physical Check- up".  I have also been told that after chemo I will be on a two year maintenance of chemo I am not sure yet what that entails, but soon will.  I believe it is six times a year.

For anyone facing chemo for the first time, it is hard to know what to expect and it is true that everyone is totally different.  There are of course side effects, but, in my opinion, manageable and your cancer team will see you through it.  Mine have been brilliant and I am being treated at my local hospital.  I have recently had friends who, with different cancers, had to be seen in London Hospitals, and they have come through it, out the other end and enjoying life.  I am aiming  to be just like them!

My questions are more like - can I mix freely in the two years I will be having treatment - or is it a err on the side of caution again.  I have this time, during treatment, kept pretty much to ourselves - and very few visitors, even for a cuppa they wore masks, as this winter, with re-emergence of  COVID and flu - thought it would be best, but having said that.  I still have to go the hospital appts, mix with the people and staff there, walk to car parks etc., so it getting a healthy mental balance between it all.  Would very  much like to hear if anyone on here is going through maintenance at the moment and can give me some positive pointers.

Take care

  • Hi again  and well done navigating over to this group and putting up your post.

    I won't repeat what I put in my reply to your first post (but you can always find your older activity by hitting your community name and look for activity) I have not had Maintenance Treatments as it would not help me but the link I have put up on the left will unpack this and lets look for any member who has had the treatments to get back to you.

    To address you questions..... anyone who's immune system is suppressed due to treatments or living with a blood cancer needs to be careful as the Infection Risks are always there.

    But in simple terms life has to go on…… and it’s your choice.
    If we transported your question back to this date in 2020 before covid had come along there would be less focus on infection risks. But infection risks were always there and we all navigated the best way forward for our own circumstances often blindly with a lack of complete understanding.
    Over the covid winters of 20/21 and 21/22 there were much less general infections and this was all down to the wearing of masks (incidentally I was wearing masks in hospital way before it was a covid thing) and our general awareness of infection risks and hygiene.
    We all have now to assess our own circumstances and do what we need to do to reduce infection risks based on our recent experiences (and we have had lots of practice over the past few years) and get on with life…….
    During my treatment and after my treatment we went out for meals, had family and friends to visit, went to the cinema....... but we just controlled the time we went and did not go anywhere when it was busy and all out family and friends knew about our infection rule that you don't knowingly take bugs into the house. 
    Infection risks unfortunately are here to stay and the majority of the population are not that affected by this - we unfortunately are and will always be ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi Mike, many thanks for this supportive message.  I will ask my cancer team what is their view, but like, you said its our choice.  Obviously none of us wants to completely isolate our family and friends for the foreseeable future and your advice is just what my husband says. Just to update, I am well at moment and awaiting Cycle 5 - hopefully with the reduction in the drugs as advised by my medical team, and I start to be more mobile (legs wise) sooner rather than later, but must add "everyone reacts differently".  I was told the programme of treatment for me when I started, so I just accepted it.  I have read somewhere on here that some people stopped the maintenance etc., I suppose its a "suck it and see syndrome".  Your story is quite amazing. Lymphoma (now I understand is a chronic illness) that we can live it hopefully for some period of time.  I liken it to two friends of mine who have chronic heart disease, and can't do much etc., and they are still  here 12 years later - with advancement in medication, heart tablets, and so forth.

    I think I was in shock and awe to begin with as I thought "i escaped" - but maybe it was for the better it raised it's ugly head now, when I feel I am fit enough to take it - hopefully!   Keep posting.

  • Good morning  

    Treatments are selected and proposed based on everyone's individual needs and possible future condition developments. Not everyone gets maintenance as it just does not work for some conditions..... but treatment will always come with risks especially infection risks.

    As for your mobility, the less you do the longer and harder the recovery will be. That is why I strived to keep walking even when connected to my 2 IV pumps.

    When it comes to infection risks - in simple terms life has to go on…… and it’s your choice.

    If we transported the question back to this date in 2020 before covid had come along there would be less focus on infection risks. But infection risks were always there and we all navigated the best way forward for our own circumstances often blindly with a lack of complete understanding.

    Over the covid winters of 20/21 and 21/22 there were much less general infections and this was all down to the wearing of masks (incidentally I was wearing masks in hospital way before it as a covid thing) and our general awareness of infection risks and hygiene.

    We all have now to assess our own circumstances and do what we need to do to reduce infection risks based on our recent experiences (and we have had lots of practice over the past few years) and get on with life…….

    Infection risks unfortunately are here to stay and the majority of the population are not that affected by this - we unfortunately are and will always be ((hugs)

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • HI, yes everyday, I tried a walk to my local shop - without fail, as I said generally my health is good, but the walking was a huge effort.  My local shop would normally take me 4 mins to go and 4 mins back, but it would take me a bit longer each way with the heavy legs.  I did that everyday, since starting chemo on 2nd November - but alas the snow and ice, was not condusive to too much outdoors, so I walked around the house and listened to my body.  I am glad that I feel I am doing the right thing.  My husband and I are going to a local park, withing 5 mins drive of our house, and it has a lake and wildlife etc. to ,look at.  A cafe also, but will be avoiding that, and very near in case I do need to come home - but I will let you know.

  • I don’t know where you live..,,,, but we have SNOW Snowman

    This is at our daughters who lives just the other side of Inverness on the hills above Loch Ness



    Good on you walking - this sign is everywhere in our Heamatology Department and it’s very true.

    ……. I must have had the fitness level of a 90 year old after my second Stem Cell Transplant as I was in bed for about 3 weeks and left in a wheelchair.

    We always tried to get out, even during the most demanding treatments. We are surrounded by beautiful countryside and can walk for miles and not see another person. 

    We have also been to cafés and restaurants even during my treatments but are very carful where we go and what time we go.

    We go to places we know very well and they know us and my circumstances so we always get a table that is ‘safe’…… but places like supermarkets are a no go.

    Keep safe but keep fit.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Wow looks lovely.  Too much snow for me.  I live in North Kent, and commuter belt area to London, but we do have some green parks, and spaces to enjoy.  Did my walk today around local heritage house and grounds,  albeit 5 mins then a bench then a further bit etc.,  Some days my legs are better than others, but I hope my walk = however, short or long, will put me in good stead for recovery later on.  If all else I am trying to be as positive as I can.   I now realise I have to live with this disease and try and find the best course of action that seemingly will be best for me.  

    Still hopeful for a good outcome!

  • HI. I was trying to look at some posts regarding my condition, found one, but can't remember now.  But they said they had the same treatment as me, and same diagnosis all is good. But no mention of maintenance for two years.  I will find out more next month, but I hope that maintenance treatment is not as severe dose as the one I am on. (they are reducing that next cycle re pins and needles, and unable to walk comfortably as mentioned before.  Other than that, I have not lost my taste, but I have lost my appetite - and although in the scheme things, I seem not to be able to put a few pounds back on, and I am making sure that I eat at least small potions of anything 3-4 times a day ! And if it was not for my legs, I would say that I feel extremely lucky that I have not even been sick (although I have taken sickness tablets occasionally) as advised. The only thing I struggle with with 3.5 litres of water, I do about 2, with other drinks etc.   For two days this week, I was amazed that my legs almost felt normal, so much so that I emailed my team and reported a good positive (rather than a bad) and I added a caveat that I hope it is not a fluke and there is light at the end of tunnel eventually - but yesterday and today, the heaviness is back... but once the ice has melted a bit later in the day I will get out and do my 10 minute jaunt!

    Getting there!

  • Good morning, the Site Search Mag tool near the top of the page will allow you to do word and subject searches so try putting in 'maintenance' and have a look..... and as always you can hit reply to any discussion thread and see if the member is still using the site.

    Food is fuel and you need it........ it's nothing about taste.... it's about getting fuel into your body.

    You are doing the right thing. don't sit with a plate of food...... mindless nibbling throughout the day is the best way forward. I lived on regular small cups of good liquidised homemade soups for months.

    3.5 liters of water for you is far to much........ if you are doing 2 liters well done.

    As my CNS always said "no pain no gain' when ti came to getting active.

    Yes you are getting there Thumbsup

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi.  Working around the site and have posted specific questions to those out there who might have similar side effects..ie the heavy legs syndrome etc and maintenance chemo.

    Good in myself today apart from the above!  Still managed my 10 min jaunt to shop and back....really can't wait to finish the chemo...I am  hoping it will fi ish at 6!  very impatient person, but also realise I can't complain too much.

    Hope you are not too cold up there! Thank for all the links...been exploring them all.

  • Temperature is going up so most of the snow with us has gone but daughter lives much higher up so it will take longer to go.

    Heavy legs is most likely down to the lack of activity and muscle wastage….. you just need to keep some activity going then once your treatment is complete you start to build back up.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge