Hi

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Hi, I was diagnosed with Follicular Lymphoma back in September, started chemo in late October and finally completed all 8 cycles of chemotherapy 2 weeks ago.  I'm waiting for an appointment to have my CT scan, PEP scan and follow-up bone marrow check (as a small percentage was detected there so a repeat check is required) so I'm a little nervous of the outcome.  I did have a half-way through treatment CT scan to check on the treatment's progress and thank goodness, it showed it had shrunk so of course, I'm hoping the the remainder has gone to.  All in all, my chemotherapy treatment has been easy with minimal side effects and increased bouts of tiredness during the last few chemo cycles but overall, it hasn't been to bad.  

This is where I'm at right now

  • 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 but I was also diagnosed way back in 1999 at 43 with a different 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.

    I can understand why you are nervous about your final results...... but as your mid treatment scan was good there is no real reason not to think that the end result wont be the same...... I had a diffrent treatment journey but also had no real problems with my chemo although my chemo was only a stepping stone for me to go on to have an Allo (Donour) Stem Cell Transplant..... well I actually had two Stem Cell Transplants.... you can see my story in the link below.... it's a long story.

    But I am now over 7.5 years out from my last treatment and although like your FL my type of NHL is also incurable I remain in remission and I am doing great.

    Always around to help more or just to chat

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Thank you, nice to meet you 'Thehighlander'.  Re. My results........ Thank you for your positive outlook and encouragement.  I feel better after having read what you said about the likely outcome of my results....... It has truly inspired me to remain positive and to remain upbeat for the remainder of my build-up to it.

    You are also a true inspiration to others living with all types of NHL.  Wow, you've lived with your diagnosis round about 24 years now and congratulations on your 7.5 year remission.....and counting.  I will be reading your story.

    Again, thank you 

  • Please call my Mike.... I don't see me as anything like Christopher Lambert from The Highlander Film.

    Yes coming up to 24 years in May...... so I have been able to develop a rhythm in 'living with' my very rare condition.

    It took over 17 years to eventually be put into a position where long term remission was possible...... up until then I only ever had partial remission that lasted no longer then 9 months at a time.

    .....still living the dream.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Ok! I was going to call you Mike but I wasn't sure if it was ok to call you that on a public forum but now I know.....so noted lol.

    Well it sounds like your doing very well with your long remission.  There are lots of questions I want to ask you but I will start to read up on your story before I do......and maybe some of the answers will be in there already

    Lee

  • Well Mike I have read all your story, suffice to say you have definitely been through the mill without a shadow of a doubt.  Very truly inspiring especially in the treatments that lead onto your current long-term remission period.  I can definitely see a book and film coming out from this.........