Hi
After many months of chest and stomach pain I finally managed to persuade a GP to order a CT scan, the results of which showed possible lymphoma activity in my lungs, this was followed up by a phone call from my local oncology department inviting me to have a face to face with a haematologist. (May 2024)
Following that appointment tests were carried out and within three weeks another appointment was arranged and it was confirmed that I have grade 4 follicular lymphoma.
This resulted in six cycles of OCVP , a PET CT scan revealed that the treatments had no effect and if anything there was considerable progression, obviously disappointed by the results but remaining calm and positive, I was then referred to Kings where I was offered a chance to take part in car-t clinical trial, unfortunately I was too unwell to take part and ended up admitted to the local haematology ward being treated for sepsis, during which time I developed an all over body rash, was discovered that I have a hypersensitivity to MABs drugs, still positive still smiling.
Now it’s January 2025 and started on another treatment at the local hospital, this time R-bendamustine three cycles, had major reactions to the treatment but desperate for some sign of remission we pushed on through the three cycles followed by a PET CT, showed no sign of remission and again further progression of the disease, positivity is now slightly jaded!
This is followed up by another stay at the hospital with infections and potential blood clots, started on lenalidomide.
Side effects of the lenalidomide have been a bit nasty, swollen limbs, difficulty breathing, sweating constantly, chronic constipation etc
The good news is that my nodes have reduced in size!! So a small ray of sunshine to cling onto!
The reason I post is, it’s only been a year since diagnosis and I feel like I’ve been as others do been 15 rounds with George Forman! I’ve stayed positive and strong all the way through this and now am feeling warn out and to be honest unhappy, it’s taken so much energy to remain happy so to show others, I’m fine, im ok, im dealing with this… im allowing myself this low period as its normal and im only as we all are, human.
My beloved dog died and got made redundant, so as you can appreciate not smiling any more!
A clinical trial is on offer again, luckily for me, I know it’s my best chance of achieving remission and am very much looking forward to starting.
I should be more excited by the upcoming clinical trial but am licking my wounds as it were, I’m sure that inner strength will return and I will be ready to go, they say PMA is a great weapon to have in your arsenal when fighting cancer, I need mine to return. Pronto!
Having super family and friends has and is helping enormously, also a few one on one sessions talking it through is a must!
Just wanted to get this off my chest and share with this community, suppose am hoping for some feedback from peeps who are or have been in a similar situation.
Thanks for taking the time to read this , stay calm, keep positive and strong. 
