[myeloma2016Participant]

Hi everyone,
I have been in remission since August 2020 after my first line of treatment (deduction and ASCT). Prior to the treatment, I underwent spinal surgery due to compression of the thoracic vertebra T2. Recently, I have been experiencing back pain at the surgery site as well as in the lumbar vertebra. I feel pain and discomfort whenever I lift more than 2-3 kg. A CT scan revealed several lytic lesions in a few thoracic and lumbar vertebrae, although they are not tumors. I have also had an MRI.
I completed a full blood test, PET scan, and bone marrow aspiration, all of which showed no evidence of myeloma activity. All results indicate that I am still in remission. I am curious as to how I developed lytic lesions while remaining in remission!!!!

My specialist/oncologist believes that the lytic lesions have already been present, but previous SCT and MRI scans didn’t reveal any new lesions (2 years ago). Has anyone experienced a similar situation?

[gcParticipant]

Hi. My situation a wee bit different. I was diagnosed 2023 and had stem cell etc but never achieved full remission. At diagnosis MRI and CT showed compressed fractures and lytic lesions. I am on the radar trial and now on a maintenance programme of Lenolidomide 10mg for 21 days and an infusion of isatuximab every 4 weeks. My myeloma markers are stable…long may that continue.
However my back pain worsened. My consultant reassured me it was not my myeloma but it could be another lytic lesion or just the ones there becoming more active. I could have done something to aggravate my back. We decided not to ?have another MRI as if it is lytic lesions they couldnt do anything as my bones are bad.
Having said all that I manage to lead a pretty full life- a bit different from my old one but I do live life.
I hope you can get some answers and wish you well.

[myeloma2016Participant]

Thank you for sharing your experience. It seems they can’t do much for me at this point. I forgot to mention that I had XGEVA 120 injections for four and a half years, initially on a monthly basis, but I gradually transitioned to every two, three, and four months. I had to stop the medication for six months to have one of my wisdom teeth extracted (three months before and three months after the surgery). Following the recent pain, my specialist advised me to resume XGEVA 120 injections monthly. While I can manage the back pain, I cannot deny the negative impact it has had on my well-being.

[Author]

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