New Diagnosis

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Hello, I am new to this forum. I have recently been diagnosed with Stage 3 Non Hodgkin's Follicular Lymphoma. I have to have some more tests, including a colonoscopy, but all being well I will start a course of immunotherapy in a few weeks. Still processing but I understand this is a condition I can live with, and I've already read some really inspirational stories on this site, so managing to stay pretty positive at the moment! 

  • Hi again  and we’ll done navigating across to this corner of the community.

    I remember back 24+ years being told that I had a rare incurable type of NHL but was also encouraged that there was lots of treatment options as and when required.

    I worked in a demanding teaching job for the first 12 years of my journey until I retired in 2011…… I turned 68 last week and although my condition continues to be incurable I am 8 years out from my last treatment and doing great.

    When you say immunotherapy do you know the exact name?

    My treatments were full on at times ranging from being treated as an day case out-patient to being in hospital for a month……. you can see my story through the link at the bottom but as I had to eventually have Donor Stem Cell Transplant the long hospital stays were required.

    Most first line treatments are done as out patient, with this in mind you may want to have a look at this link Top Tips for the day of your Chemotherapy as it helps get you prepared for this times you are having treatment.

    Always around to chat.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Hi Mike,

    Many thanks for your response. Reading about your experience is really helpful. All being well with the other test results, I will start a course of Rituximab, one day a week over a 4 week period. My understanding is this will hopefully delay the need for chemotherapy. It's a lot to get to grips with. 

  • Hi again  I am glad that you are finding the discussion helpful.

    I was on Rituxitmab as part of my 6 cycles of the R-EPOCH regimen...... this treatment contained some very strong chemos and although this treatment required me to be in hospital 6 days/5 nights for all my 6 cycles on my 2 IV pumps 24/7...... (so I had about 600hrs of Rituxitmab)....... I actually did ok with it all.

    As Rituxitmab is a targeted (biological) therapy it is less demanding and toxic compared to chemo.

    Over the years I have talked with many folks with FL both on here but also on the various Lymphoma Action Support Platforms who have only ever had Rituximab and this was enough to put the FL asleep for a good period of time.

    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.

    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.

    Always around to chat and answer questions.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Thanks again Mike for all the information. All very informative & encouraging. I will definitely take a look at all the information on the Lymphoma Action platforms.