Hi there. Sorry long post 
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Please can I ask what symptoms people had? The first time I was diagnosed I had a small swollen lymph node about the size of a baked bean in my neck and also the inability to pass water due to a large tumour in my pelvic area. After a scan I got a diagnosis of stage 4 large diffuse B cell non-hodgkins lymphoma triple hit. After 4 months of chemo (during which I developed a drop-foot) a PET-CT scan showed a complete remission. After 6 weeks I began to get symptoms again, this time an inability to move my leg at the knee (a tumour was on the femoral nerve) a swelling on the side of my head which made my head look an odd shape, and a large red lump on my eyebrow resembling a boil without a head which got so large I couldn’t open my eye properly. Again, chemo removed these (although I still have numbness and very little movement in that leg) but it was a different, stronger chemo. 3 weeks later I began to get symptoms again. This time it was extreme pain in my right hip and thigh (cancer was in the muscle) and a series of large red boil-like lesions (similar to the previous one) in a circle on the front of my right shoulder. A short burst of chemo began to reduce them and I then had CAR-T cell therapy in Nov. I still have pain and numbness right down my right leg very little movement in my lower leg and a drop foot on the other side but no new symptoms. A PET-CT at the end of Feb showed no cancer.
As Each time my symptoms were so different (swollen lymph node, abdominal swelling, large red lesions, muscle pain, etc) how will I know what to look for next? Are there symptoms which are more common? What symptoms did other people get?
Hi again Lellynelly..... when you go through a lot of treatment, lasting a long time and are left with physical reminders of the treatment journey it is natural to think "what if"
With 80 types of Lymphoma presenting in so many different ways the choice of what to look out for could be endless...... but for me, I have chosen to move on from looking for what can go wrong next and focus more on how can I move on and at the same time take control of the battle between my ears.
Easier said than done I can hear you say...... but it's how you position yourself on what your focus is on.
I am just happy to be in remission from a condition that in 1999 was described as incurable but treatable and you will never see remission from. Every morning at about 10am I sit with a cup of coffee in my office chair and follow these words I read in a book
“I pause to be still; to breathe slowly; to re-centre my scattered senses upon the good that is available”
But to answer your initial question "What symptoms did other people get?"
You can see my story in my profile and during all my 20 years I only had bad skin for the first 14 years, then a large surface tumour, then a growth in my neck and some activity in my Bone Marrow.
A few months after my second Stem Cel Transplant a follow up CT showed a new node in my lung....... I won't bore you, but I was eventually told it was nothing to worry about, even better as I was sitting on the CT table ready to have a lung biopsy..... had one before and it was not a great experience.
From that point on I do not worry about the "what if's" I understood that doing this was feeding my stress and anxiety. I can't control the future but I can control how I move into the future.
These are challenging times due to this virus but this will pass - stay safe.
((hugs)) from a safe distance.
