I was diagnosed in 2016 with solitary plasmacytoma soft tissue in the nasal area.5 Weeks of radiotherapy a year of remission.Then due to many more tumours mostly in the neck area and some in the body. Re diagnosed as multiple solitary plasmactoma.I then had chemotherapy followed by stem cell transplant in Feb 2019. Relapsed with a further tumour plasmacytoma on my neck in July 20 , which was treated with radiotherapy which initially worked ,However it recurred in same area in Nov 20.The plasmacytomas have caused real damage a broken nose, diabetes insulin controlled due to damage to my pancreas.cateract in my left eye which was caused by the radiotherapy, now rectified after an operation.
The treatment I recieved is all myeloma based.However it seems a different disease as my blood tests normally show nothing to indicate a tumour plasmacytoma and my bone marrow is fine.I was originally told at first diagnosis it was better than multiple myeloma not sure about that now.There is not much information about multiple solitary plasmactoma. So was hoping there might be someone on here who has some.Also started daratumumab in Dec 20 was hoping that could be informed how long it can take to take to get a response.
