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Hi all, iv just been diagnosed with nhl follicular lymphoma, I have stage 2s, I'm on watch and wait. Some people have treatment straight away.any info would be greatly appreciated. I'm like a fish out of water with this. Thank you in advance Karen.

  • 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 (FL) but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable, ‘other 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.

    Like many people who are first diagnosed with a Low Grade NHL (and indeed for me in the first 14 years) being put on Active Monitoring (Watch and Wait)  is rather normal as your condition has not developed to a point that it needs immediate treatment…… and at a point where treatment would be at its most effective.

    I actually don’t like the term Watch and Wait….. Active Monitoring is far more positive and it’s a good platform to allow life to continue…… I continued to work in a demanding teaching job for the first 12 years of my diagnosis up until I took early retirement. 

    I assume that you are on 3 monthly clinic appointments?

    I am sure you have questions so do ask them and someone will help you out.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Hi Mike, thank you taking the time to reply to my comment, yes I was only told on the 16th August they said it will be 3 month appointments. I know very little about this illness. Looking online just Confuses me more.i don't feel ill as such it's was picked up by chance  I went for something else and it was picked up on ct scan, but how do you cope with the emotional side. I know I can't change things but I'm really finding it hard with trying to carry on as before. Any tips would be greatly appreciated. Hope you are doing well and thank you

  • The links I have given you (click on all the text that is in bold and italics) are taken from the Lymphoma Action website. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.

    The fact that you have found out you have FL by accident says a lot about the condition.

    FL is the most common type of Low Grade - Slow Growing NHL and I have talked with folks who are years in and never had treatment.

    Consultants will often say that you have to see this as a life long chronic condition like say diabetes but unlike diabetes you may only need treatment from time to time….. and there are lots of treatments.

    I think it’s the ‘C’ tag that throws everyone.

    As I said I was officially diagnosed back in 1999 with my type of  incurable NHL but my consultant called it something else - not cancer….

    I found out by accident as I was copied into a letter to my GP….. my next appointment with the consultant was interesting but his words were ‘You have lived and worked a normal life over the past few years and you have not had any problems…. don’t let the C word change this’ …… and he was right as it took a further 11 years before I needed any full on treatments.

    So it is all about controlling the space between the ears.

    Lymphoma Action run regular Support Platforms..... I highly recommend these groups as there is nothing better than talking with other who have walked the journey.

    They also have a great Lymphoma Action Buddy Service where people can be linked up with someone who has walked the same treatment journey.

    They also have a Lymphoma helpline on 0808 808 5555 where you can talk with someone and get support - open every week day from 10 till 3.

    ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Thank you Mike  that's really helpful. Really appreciate it. All the best, Karen.

  • Hi KarenTheresa - My FNHL was picked up at a routine scan over 6 years ago... unfortunately last year I did have to have chemo 6 rounds of O-CVP happy to say all over with now and in full remission. I am also on a maintenance plan for two years which involves having a chemo top up every two months, but you don't know you are having that, as it is nowhere near like the harsh chemo!  With watch and wait, like I have said before, I really put it out of my mind and carried on with normal living until each appointment and that is what I did for six years. I travelled, babysitting grandchildren, school runs etc.,ie a normal daily life.  If you are well, try and carry on as normal and stay off of Google! You can also contact your medical team with any concerns - but hopefully you will be fine!

  • Hi Mike, just am update.  I am still doing good and would you believe maintenance No. 3 happening next week.  My problamatical legs, much improved, but along with walking trying a few physio appointments, which seem to help as well.  Can but try!  I can't believe how well I feel compared to last year, so hopefully the treatment has worked!  Hope you and family are well, and will keep an eye on this site ocassionally as I do think it is a good thing to have a community available to you to chat things over with good or bad.  Over and Out!

  • Hi  good to hear how things are going and that you can actually recognise the progress you have made over the past year….. it often feels impossible but it can be done.

    Keep on keeping on.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Have they told you that some people have been on watch and wait for over 10 years ?

    Well it wasn't me :-)

    I did nearly 7.

    They start you on 3 month appointments for the first 12 months and if everything is good they will stretch them out.

    Yes it was hard getting my head round the diagnosis and it's only later on that you realise how much it affected you.

    If you want you can google Lymphoma Bob .

    He writes a blog about it.

    Yes he does have it.