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.