Newly diagnosed follicular lymphoma

Hi again Bright side (I put up a reply to one of your other post) and a warm welcome to this corner of the Community

I am Mike and I help out around our various Lymphoma groups. 

I don’t have Follicular Lymphoma but for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell - Not Otherwise Specified NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.

Any questions just ask…… My story is rather complicated See my story as I had to go onto have significant treatments mainly due to me developing a second more aggressive type of T-Cell NHL in late 2013……….. but I am 9 years out from my last treatment and turn 69 in a few days and I doing great.

Hi, Thehighlander (Mike), not posted for awhile, as you directed me to the FB Lymphoma site, which I found very useful, along with this site. I have done a few posts on The Lymphoma site as well.  Just an update.  I joined here towards the end of my first ever Chemo for Follicular Lymphoma, and got great advice, which I adhere to still  to this day, nearly 2.5 years later.  In February I will  have completed 2 years of OBININTUAMAB (cant spell it) maintenance - apart from getting COVID for the very first time, I think I can safely say I sailed through the maintenance, and my confidence has improved with mixing around people, travelling etc.  I even joined a private GYM, purely for the nice swimming pool, so I can keep my muscles strong! Hair grown back etc., and weight back to pre chemo days (so now need to keep a watch on the waistline)!  I think you  and your other champions do so much for these sites, it is invaluable and necessary for people on a journey they don;t know what to expect.  Once again, grateful that your post put me on the right track to go forward.  Hope you and your family up there in the very cold part of the world, have a joyous Christmas, with good heath.

Hi again Glann it’s great to hear from you and to hear how you are doing.

It’s also encouraging that you have found this Community and my small contribution helpful and indeed the Lymphoma Action group helpful….. I most likely have replied to some of your posts on there as I am one of the LA group Moderators

You have an amazing Christmas and let’s look for 2025 to be a good healthy one.

Hi Mike,

Just could not resist this today, thought of you immediately.  It is what I remember most from our post here and on the Lymphoma Facbook site.  A lovely diary 2025!

Oh this is a great find and it’s a very true saying.… have a great Christmas and let’s look for a healthy 2025

Hi, I started 8 months of Chemo treatment at stage 3, in November 2019 For Non-Hodgkins Follicular Lymphoma, which is classified as incurrable. So it maybe an idea to enquire why you haven't begun treatment yet. The side affects were not too bad, the nausia was kept under control with medication, plus I didn't loose all of my hair and went ck to work once the lock-down was lifted.   Sadly, my treatment didn't last as long as expected, (approx 10 years) and we think it was possibly due to not receiving the 2 year anti-body maintenance eatments due to the covid pandemic. They are looking for signs of re-occurance after a  2 year period.  So I started my new treatments last November '23 of 6 months chemo in preparation for a bone-mrow stem-cell transplant. I had that in June '24 which takes a minimum of 3-6 months to recover from. I am 6 months post treatment and had to be re-vaccinated with all of my childhood vaccines todayI am now on the other side of a long hard year and beginning to feel much better, although, there is still a bit of fatigue so not quite fit for work just yet. This is the best chance for pro-longinmy life now.  By the time it flares up again in a few years time I'm hoping the drug they have for it would have finished it's trials so I don't have to take any more chemo. Goodn Luck.