Hi All, I was diagnosed wirh FL in 2017 (grade 4 with bone marrow involvement, low grade). I was on watch–and–wait for 4 years.
Then when my lymph nodes + spleen had swollen considerably, we agreed I would have treatment comprising ritux + bendamustine. I had 3 infusions out of 6 planned, and I asked to pause the treatment when Covid rates became very high. Three months after my 3rd infusion I had a CT scan which showed that the swollen lymph nodes had retreated markedly and my spleen was back to normal size. Hence further Bendamustine treatment was ceased, and I subsequently had maintenance treatment (Ritux only) for 3 infusions; but this was halted when lymph nodes started to swell again.
In late January, 2022, I started to experience lower back pain initially, which then spread into right hip, right thigh and subsequently into left hip as well as up into my abdomen. The pain at times is quite severe. I manage this with a mix of Ibuprofen, paracetamol and Cocodameine (paracetamol + codeine), the latter only at night and max 2 tablets only.
I contacted my Haematology team in February about this, and they suggested I speak with my GP, who requested blood tests and hip and thigh X-ray. All results were normal. At my request my GP also did 2 tests for prostate cancer – both negative.
I had an appointment with Haematology last week, and they had no idea what was causing the pain. I had had a full body CT scan in January, 2022, and this showed that there was some slight disease progression but nothing that would indicate such pain. Thay asked me for further blood tests and possibly another CT scan (ugh! – I'll soon be glowing!).
Has anyone else experienced such pain seemingly without a known cause?
Thanks in advance.
powerofthought
Hi again powerofthought. Having been on my journey coming up to 23 years I am never surprised to hear about folks just like yourself having unexplained pains.
The one thing to try and get is your vitamin D levels checked. For many years I had this checked every 6 months (not a normal test GPS will do) as I have Thoratic & Lumber Spondylosis - Spinal Osteoarthritis so keeping a correct level helps reduce my joint and bone pain.
Although, once I had my two Allo (Donor) Stem Cell Transplants (The last in Oct 2015) I bizarrely have had no pain and not needed any pain meds.
I wish you success in you getting answers and a way forward.
