Brother 58 had a lot of back pain and it was discovered through MRI he had a spinal tumor with a few lesions. He had high protein levels. He is due to go in for some radiation treatments in the next couple of weeks before his oncologist appt at a major cancer center in the US. What has been your experience with being newly diagnosed and what treatments did you start on? The waiting is the worst part. He also had a bone biopsy which showed 30% myoloma cells.
Hi @Chiswick my experience of being newly diagnosed is a complete mixture of emotions from fear, shock, disbelief, anger, anxiety and I felt in a bubble with the world going on around me, I came straight home and wrote my will and funeral music, that was 18yrs ago. These thoughts and feelings lasted a while.
I had entered a world of waiting and that is a horrible time and I felt out of control, I was powerless, I had also entered a world of medical talk.
My experience is that family members can go through similar thoughts and feelings.
I was actually diagnosed with the same blood cancer at the same time as a friend in California.
I have always been on active monitoring (watch and wait) and she was put on a treatment regime immediately.
We are both well and enjoying life today.
What I would say is that you both need to look after yourselves and be very kind to yourselves.
My experience in the UK at diagnosis 2017 was very quick i had a bone marrow biopsy on my first visit a CT scan the following Tuesday confirmed Wednesday and started VDT on the Friday
7 weeks in I wasn’t responding to VDT in a lot of pain I couldn’t lie down in bed and if I did I couldn’t get up again. I was found to have a tumour and fracture on my T9 plus many lesions in my ribs/pelvis/shoulder/
After my pain was under control I had one dose of radiotherapy on my T9 then started ESHAP as my protein was 45 light chains 1200 and myeloma involvement of 75% in bone marrow
We hoped that ESHAP would halve the protein to enable me to have a stem cell transplant which it did it went to 25
I also was on the verge of renal failure and very anaemic
I went on to have my first transplant
There are different regimes available now that were not available in 2017
Myeloma treatment is individual so what worked for me might not work for someone else
The US could have different regimes than here in the UK also.