Hello - me here, aged 76- mother's favourite eldest son. Autumn 2019 to May 2020 course of ABVD + radiotherapy - told cured but radiotherapist missed a dodgy node. Then began course number 2 of Brentuximab for 6 months beginning this April . Side erffects were horrendous including need for 10 days hospitalisation and now left with numb fingers and toes (try doing up shirt buttons - darling, the frustration) but slowly improving. This didn't work so number 3 chemo begins in January. Pembrolizumb in a completely new hospitlal as I moved from Oxfordshire to Kent last month.Why Kent?- close to family. I am happy to share, in depth, my recent experiences with anybody who wishes to have a discussion. Finally- I love the NHS and it is due to them that I am still here - thanks.
Hi Tenterden and welcome to this corner of the Community although always sorry to see folks joining us. I am Mike Thehighlander and I help out around our Lymphoma groups.
I don’t have HL but was diagnosed way back in 1999 with a rare incurable but treatable type of skin NHL Stage 4a so although my Lymphoma ‘type’ is different I have experienced most types of treatments used but not necessarily the exact same drug mix but understand this journey rather well unfortunately.
Sorry to hear about your treatment experiences and let’s look for this next treatment ‘hit’ to hit the right spot. I understand this well as I have relapsed a number of times over my long years…… but like you, I do so appreciate the NHS as they have kept finding the next treatment.
You may want to take a moment and put some information in your profile (see the link at the bottom of my post) and as always, you can hit members community name and have a look at their stories.
Always around to chat and help as best as I can.
