However, about six weeks ago, following extreme pain in my back / ribs, a lump about the size of a golf ball was found in my right lung, specifically between the lung and pleural wall, which was identified as a soft tissue plasmacytoma (as opposed to one on a bone).
Since then, it has grown fairly aggressively – spreading across the pleural wall. I’ve now started on a more aggressive DL-PACE (L=lenalidomide/Revlimid) chemotherapy regimen with a view to another autologous stem cell transplant in the next few months and probably an allogeneic transplant as well. Initially we were looking at radiotherapy, but with the spread of the tumour it is becoming too hard to target and there was some concern of damage to the lung, which not be ideal heading into a stem cell transplant. So this has been put on hold.
Has anyone else had experience with extramedullary plasmacytomas?
I have read a few research papers and some of the things I have found:
- The behaviour of soft-tissue plasmacytomas is not well understood and the treatments are usually the same as for myeloma generally (with the exception of the use of radiotherapy)
- Generally the prognosis is not good (even worse than relapse with a bone-related plasmacytoma)
- There seems to have been an increase in the rate of soft-tissue plasmacytomas over the last ten years or so. There is some speculation this could be linked to the use of novel agents, which started being used around the same time, but there is no clear evidence to support this and it may just be that detection has improved with better scanning methods available.
- Some researchers have postulated a link between soft-issue plasmacytomas and scar tissue from previous surgery, although no broad study has been undertaken. This particularly interests me as I had a pleurodesis when I was 14 to overcome collapsed lungs. The procedure involved scarring of the pleural wall in my lungs.
