Hello

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Reeling a bit from a telephone conversation with my consultant this afternoon after the MDT meeting . At my first appointment they thought I had a curable NHL, now it looks as if it is follicular. Another face to face appointment with them on Monday. Used to coping with Polymyalgia Rheumatica then Fibromyalgia, but this this a whole new ball game. 
I am actually terrified. 

  • 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 but was diagnosed in 1999 with another type of Low Grade NHL but my type is very rare, yes incurable like FL but treatable. I went through all the stages over my first 14 years eventually reaching Stage 4a. So although my ‘type’ is different I have experienced ‘the’ treatment journey but not necessarily the exact same drug mix.

    When you are told that you have an incurable blood cancer the space between the ears implodes....... but once you ‘get’ to understand this type of NHL better the noise between your ears will clam down.

    You will see that FLis the 4th most common NHL so this means the tools to treat you 'if required' are well tested and very effective. I say 'if required' as I have talked to many in this community and through Lymphoma Action who have had little or no treatment.

    This following link from the Lymphoma Action site explains Follicular Lymphoma very well. 

    This second LINK will take you to questions to ask your medical team about your lymphoma.

    Take a few breaths and get yourself ready for Monday by reading the info I have given you.

    If you have further questions do put them up and we will try and answer as best as I can.

    In way of some encouragement, when I was diagnosed in 1999 I was told “Mike, I am sorry to tell you that this type of NHL is incurable, yes treatable but you will never be in remission”...... but after years of various treatments in September 2016 I was told I was in remission for the first time in 17 years - and I am living the dream......... lost of positives coming your way ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Sorry to hear that you are terrified - I think being told over the phone is horrendous.  Please take a deep breath and look on this diagnosis as a Treatable cancer. Mike's excellent advice is always something  to take on board particularly the Lymphoma Action group. I was diagnosed with follicular non hodgkin's lymphoma at the beginning of last month and have gone through a battery of tests - the result of which means I am on active monitoring for now. My lymphoma is very low grade and so I don't need chemo yet and may carry on like this for a long time. I will admit I have gone through a range of emotions but feel OK about it all now.

    If you want someone to talk to please let me know. Sending lots of hugs and positive thoughts xx

  • Hello Roberta Rose,

    So, follicular lymphoma isn't cureable at the moment, but it's very treatable and the treatments are effective.  In my personal experience (rituximab and bendamustine) they're not that bad. 

    I had a phone diagnosis from my orthopaedic surgeon and I was actually very relieved because I feared it was a nasty type of bone cancer.  My GP and I suspected what I had, but the full details had to wait for some months of tests.  I guess you've already had some of these?  They will test for the stage of your lymphoma and what type it is to decide on the best treatment. 

    Treatments vary.  I was able to read about them on Lymphoma Action, just to see what was out there.  It also tells you about side effects and how the drugs are given (mostly drips, in outpatient settings).  It clutters your diary with appointments and blood tests, but usually the courses seem to last about 6 months and they aim to get the lymphoma into remission by then.  I've been in remission for just over 2 years now and apart from being susceptible to infections and having to shield from Covid, I've had no recurrence and no surprises.

    Your consultant will explain what's planned for you and I'd take a notebook to jot down the details and your own questions.  We all forget things in the stress of the moment and it helps to get your head around things. 

    Best wishes for your treatment and remission!

    Cecren

  • Hi Cecren, thank you for your reply. I found your mention of bone cancer very interesting as I have a huge, hot, red lump on the side of my knee. I has been ‘treated’ with blood thinners as both GPs and the consultant have thought it is a haematoma, but it is hard and doesn’t seem to behave like one. Another question for today I guess. I had read that Follicular Lymphoma did not include the possibility of remission but two people have now said that they are in remission. Another question to ask. 
    Thank you again for your reply. I feel far less isolated than I did before. So many of us are going through this and although we are all at different points in our various stories, there is a kind of solidarity here. Take care. Xxx

  • Hi Mike, thank you so much for your realty kind response. Your story gives me hope that I will be around for a while longer. 
    The problem seems to be that my lymphoma has transformed and is follicular but aggressive, but the consultant did say that the treatment for both the NHL it was thought I had and this one are the same. 
    Thank  you for the links. They are really useful. I felt like a rabbit frozen in the headlights but I am calmer now. 
    Thanks again. I just hope my story will continue for many years too. 

  • Hi Pincushion, it is so kind of you to respond. I feel as if I am a snowball, gathering layers of support as I roll through this. As you may have seen from my response to Mike the Highlander, my Follicular NHL has transformed to an aggressive type. Two CT scans, a PET scan,  a biopsy and several blood tests seem to confirm this. So today is the day for a deep breath and to try to listen and take in what is said to me. My chemo will start this week, so that is a positive. I am sending my best wishes to you and thank you for the big hugs and positive thoughts. 

  • Good morning , it’s good that you have found the reply’s you have revived helpful.

    It took 14 years before my ‘type’ decided to become very aggressive and was given a few years on the clock (hit my community name to see my story) but my clinical team came up with a plan and were able to get me into my first long term remission in over 17 years.

    FL can indeed be put into remission but as you know, like my type it’s incurable at the moment!!!!……. I am ever the optimist.

    Have you been given a treatments plan yet?

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Lots of good wishes to you this week - I am glad you are starting your treatment plan. Don't forget Lymphoma Action have wonderful people who have been on your journey and can offer support. Sending more hugs!

  • Hi Robrta Rose, remission means that there is no sign of the lymphoma in evidence. The problem with follicular lymphoma is that it can come back but the good thing is that it can be treated again and again. Sometimes it doesn't come back at all, so it's not a certainty that it will recur. Anyway, while it's gone we are in remission.

  • Thank you Pincushion, feeling emotional but optimistic. I just wish covid wasn’t making things so much worse with enforced isolation from friends and family. I am just looking forward to the Spring when the present treatment should be completed. Stay safe. xx