Newly Diagnosed Follicular Lymphoma

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Hi

I am here as TeddyD, and I have lurked about several groups and made a few posts over the last couple of months whilst undergoing the diagnosis process.

I feel like I have seen every medic in the county, given enough blood samples to satisfy a vampire and been shoved thru every metal tube invented!  - The NHS have been amazing/

Last week  I was told  I have Follicular Lymphoma and I will be starting chemoimmunotherapy in 3 days time.

So that's me - just thought I would say hi to everyone in this group and also thank you to everyone for your post on here which are so full of info and encouragement.

TeddyD xx

  • Hi  TeddyD   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. 

    Your journey to diagnosis is not that unusual when it comes to Lymphoma and can take months to get the truth but you have landed in a supportive place.

    I don’t have Follicular Lymphoma 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.

    Do you know the exact name of your chemo?...... as there are few different regimes.

    You may find this link Top Tips for the day of your Chemotherapy helpful as you get ready for treatment.

    My treatment (see my story using the link at the bottom) was rather long and my main chemo had me in hospital for 6 days/5 night on my 2 IV pumps 24/7 for over 120 hrs for my 6 cycles but i am guessing that yours may be as a day out-patient........ I will say that even although I had over 750 hrs of chemo I actually did ok with it all.

    Always around to chat and help out.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi Highlander.

    Thanks for your reply.

    I have hospital appointments tomorrow for EEG and ECG and then I will go to Haematology to get details of my treatment plan.

    I will post again after that, when I should have confirmed to me  the type of chemo I will be getting.

    Thanks again.

    TeddyD

  • Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Thank you Highlander that was really helpful. They decided on O-Chop chemo for me. I had my  first session yesterday. A long day, 8.30 to 5.00 but was so well looked after and the process itself was fine.

    Now here I am, C1 Day 2 - so many meds to get used to (and to get down my neck) but all okay,.

    It seems so odd to feel fine, but to know I will be unwell' and that the treatment causes illness to make me better in the long run - if you know what I mean?

    Some advice about the site - am I best to keep posting on this thread or start a new one? I

    Thanks

    TD

  • Good to hear you did ok…. don’t be waiting for side effects - they may not all come along.

    Using the site is a personal choice but if you have specific questions it’s worth starting a new thread as more folks do tend to answer.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge