[jj594Participant]

Hi everyone, first time posting.

I was diagnosed with MM just over a year ago when they found a plasmacytoma on my pelvis. Spent almost a year on Dex, revlamid and velcade and then had a stem cell transplant in March. Recovered really quickly from treatment and had a partial response. Paraprotein is still 4 and I’m back on low dose rev which they’re going to increase until PP drops. Couple of weeks ago I found a lump by my shoulder blade. Just had biopsy and going out of my mind waiting for results. They think it could be a plasmacytoma. What would that mean for me? Does it mean I’ve relapsed already? I’m 40 years old (but I feel about 80 with all this stress). Thank you. J

[ellenModerator]

Thank you for posting, my name is Ellen and I am one of the Myeloma Information Specialists at Myeloma UK. I am sorry that, as yet, no one has replied, it may be that no one on the Forum has had a similar experience. I hope this won’t put you off posting on the Forum in the future.
Some myeloma patients can develop pockets of myeloma cells – known as a plasmacytoma – either within the bone marrow or outside of the bone marrow. These plasmacytomas behave more like solid tumours and can occur at any time during the course of the myeloma – even after High Dose Therapy and Stem Cell Transplantation, although they are probably more common at relapse.
That said, development of further plasmacytoma may or may not indicate relapse. I have spoken to patients on the Myeloma Infoline who have developed further plasmacytoma but who were not diagnosed as having relapsed, your haematologist will want to carry out a whole range of tests and investigations to determine if this if you have indeed relapsed or if the plasmacytoma (if that’s what it is) is a separate diagnosis. Radiotherapy can treat these plasmacytomas quite successfully.
You may find our Solitary Plasmacytoma Infosheet helpful:
http://www.myeloma.org.uk/information/myeloma-uk-publications-list/other-related-conditions/solitary-plasmacytoma-infosheet/
I hope this has been of some help, but if you have any further questions, or would like to talk things through, please feel free to call the Myeloma Infoline on 0800 980 3332 – I or one of my colleagues can clarify things for you further. Alternatively you can email directly to askthenurse@myeloma.org.uk
With best wishes
Ellen

• This reply was modified 8 years, 8 months ago by  ellen.

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