Was diagnosed with HL in October 2025 after a misdiagnosis of Stage 4 lung cancer and probably a year of low immunity, other health problems and a range of seemingly unconnected symptoms. Was almost relieved to learn it was HL because I kicked that out 10 years ago and expect to do so again. However it has been much, much tougher this time: treatment is longer, side effects more troublesome, prognosis less certain. Happy to add more, just ask!
Hi Lariand a warm welcome to this corner of the Community but I am sorry to hear about your ongoing Lymphoma rollercoaster.
I am Mike and I help out around our various Lymphoma groups.
I don’t have Hodgkin's Lymphoma but I have been on my Lymphoma journey for coming up to 26 years first diagnosed way back in 1999 at 43…… when my first rare (8 in a million) ‘incurable’ but treatable slow growing Low-Grade Cutaneous T-Cell Non Hodgkin’s Lymphoma (NHL) was found….. I was on treatment regularly over these years and only ever achieved partial remission….. the longest being 9 months:
I eventually reached Stage 4a in late 2013 when a second, also rare (4 in a million) type of very aggressive High-Grade Peripheral T-Cell NHL was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well having had over 750hrs of chemo, 45 radiotherapy zaps and 2 Allogenic (donor) Stem Cell Transplants between Oct 2013 and Oct 2015…… so I know the journey very well.
I did find that as time went on my treatment did became more demanding…… but I am now over 10.5 years out from my last treatments.
Our daughters were 14 and 18 when I was first diagnosed……. but we went on to see our daughters graduate, get married, set up very successful businesses and provide us with 4 beautiful granddaughters….. I turned 70 back in Nov last year and I am living a great life and we continue to look forward to what else life has in store for us to enjoy…….. this can be done.
Every story is inspiring in my book Lari
