Newly diagnosed stage 4 NHL

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Hi all, 

I’m Kirsty.  I’ve not long since been diagnosed with Non Hodgkin Lymphoma. It’s stage 4 and Follicular according to my biopsy and I’m told I have “bulky disease”. 

As you can probably guess by the time stamp, I’m having trouble sleeping.  I only started this whole journey a couple of months back thinking my symptoms could have been IBS or hormonal but as my stomach started to do strange things I got it checked out.  That was mid September. Honestly, I’m struggling to get my head around it. I’m a pretty well and healthy person so how can I have all this cancer in my body? Of course the symptoms are catching up with me (weight loss, night sweats etc) but still….Cancer?

I’ve started chemo now, round 1 of 6… so I’m pretty tired a lot but trying to stay upbeat. But when I try and go to sleep the “what if’s” hit me. “What if my treatment doesn’t work?”, “what if it’s too late?”. I’m scared and trying to be upbeat for everyone around me at the same time” It’s all a bit much some days. 

thanks for listening to be ramble… 

  • 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 Lymphoma groups.

    I don’t have FL but was diagnosed way back in 1999 with a different type of low grade, rare incurable but treatable type of skin NHL, eventually reaching Stage 4a and although my NHL ‘type’ is different I have experienced most types of treatments used but not necessarily the exact same drug mix but understand this journey rather well unfortunately.

    You can see my long story by hitting my community name. Now my type of CTCL is very rare and the choices of treatment becomes a challenge but what you will see that even in the most dream circumstances there is lots of tools that are available todo a job on this.

    FL is one of the more 'popular' types of NHL so this then means that the treatments are more available and well tested with great results.

    You do need to get your head round a few things and once you do you will start to be able to control that battle between your ears.

    First understand you condition well and this is done by talking with others and using information that is accurate and up to date....... you will not find this every time you do a random google search so do check out Lymphoma Action, a small but very active UK Lymphoma Specific Charity who have lots of information, videos and run regular regional online Lymphoma support groups and indeed a great Lymphoma Buddy Service.

    Follicular Lymphoma, like my CTCL is incurable but very treatable so you need to 'get' that this is a life long illness. I talk with many people both on here and through Lymphoma Action who have been diagnosed with FL, treated for their FL and are years into remission and living a normal life.

    What exact treatment are you having?......R-CHOP is the normal one.

    We are here to walk this with you, to answer questions or just to listen to your rants,

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi Mike,  

    im on Rituximab/Bendamustin for 6, 4weekly cycles then depending on how my lymphoma reacts they are considering 2 years of maintenance Ritux every  2 months. 
    ive done  loads of reading (I’m inquisitive by nature and need the information as you say to get my head around it), but it’s still hard to process isn’t it?

     I think at the moment, my challenge is night times… the night sweats are intense and I’m struggling to sleep… that’s when the worries tend to start. There is very little logic to a 2am worry. 

    thanks  for the response and support.. I do appreciate it. 

  • Hi again, there have been a few been on R-B as a first-line treatment as it tends to be  better tolerated than the full on R-CHOP.

    It’s a science as to how treatments are chosen for everyone and across types of NHL.

    If you don’t mind me asking - how old are you and have you other medical conditions?

    My main chemo was a steppingstone to get me to the position of going on to have my two Stem Cell Transplants as we fully expected I would relapse very quickly and further treatment would be palliative.

    I did not have night sweats before or during my treatments but as your treatments begin to take hold on your presentation this should show improvement.

    The bazaar thing was out of the blue - two years post my second Stem Cell Transplant I went into a period of a few weeks of drenching nightly sweats……. relapse was obviously on our minds but I was checked out and nothing was showing and as quickly as the sweats had started they stopped.

    I can understand the 2am worry, this is draining. Having been on this journey for so so long I truly gave up worrying, yes it’s true…… as in reality I could not change anything regardless the amount of worry I threw at it - but I did quickly understand that stress and worry is debilitating producing a different side to being ill that is not specificity my cancer.

    Lets look for things to improve quickly.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • I've just done R-Benda and have done the first two of the ritux maintenance. It's never too late to get rid of lymphoma however bad it is so that's one thought you can drop. Good luck.

  • 43 and no, I’m pretty healthy usually 

  • So the choice of treatment will most likely relate to where it’s presenting with the options of other treatment put on the shelf just in case.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi Squirrel16

    I had the same treatment as you for a grade 4 bone lymphoma.  It was quite tolerable and the main side effect was tiredness.  I never felt sick, my body seemed okay, but I just fell asleep as soon as I got indoors and sat down.  I did have a raging thirst, which made the docs happy because we're supposed to drink lots to eliminate the tumour breakdown crud.

    Night sweats didn't happen at all with my treatment, although I know some people get this symptom because of the lymphoma.  If this is due to the disease, perhaps it'll ease as you eliminate it? 

    It is VERY effective treatment.  It was much better after 3 treatments and I was declared disease free after 6 sessions.  Two years later, I'm still fine even without maintenance Ritux.  You can hope for a good outcome and return to a healthy life too.

    Best wishes!