Jane is a haematology nurse with extensive experience in stem cell and bone marrow...
My nan is on the daratumumab currently. Before starting the treatment around 6 weeks ago she had a lump form on her head. That has become increasingly bigger over the course of this treatment. I have read that a lump isn’t a part of myeloma, but just wondering if anyone else has had something like this while suffering with myeloma and what was done with it?
Her consultant hasn’t been the most helpful!
I've recently relapsed. My bloods were showing things were still in remission but bone pain led to imaging which led to relapse. Possibly oligosecretory and mainly in the bones.
While having a pre-radiotherapy consult, I mentioned a spot on my head that had an altered sound when scratched, compared to the rest of my skull and the consultant noticed a 'soft spot' 5/10 mm in diameter.
Over the next 4/5 weeks this changed to a noticeable lump, much more spread out.
I then restarted chemo, VCD, and within 2 weeks the lump had collapsed and the soft spot is a hole in the skull about 25/30 mm, roughly circular. My consultant reckons that there would have been a plasmacytoma which has then reacted speedily to the chemo. I have an MRI scan on Sunday morning.
Lumps on the skull in myeloma are rare apparently, with only about 30 cases described in the English language.
Hope this helps answer your question.
Hey, thank you so much for your reply! Really sorry to hear that!
My nans lump came a few weeks before chemo and now after 6 weeks has only gone bigger, it’s not far off the size of a golf ball now, and after being told the treatment puts you at greater risk of attracting other cancers, that is what’s worrying the most. She had the VTD and finished that last year but came back quicker than expected, so she was started on the ‘new’ daratumumab drip. She keeps being dismissed by the consultant, as he says its ‘the myseloma’ but he thought it would have gone with the chemo and it hasn’t. So still at a loose end with him. Your reply has helped and I will have another look into that!
Thank you you very much and I hope all goes well with your treatment.
One of my concerns was that, if a lump/plasmacytoma could grow outwards into a lump, it could also grow inwards towards the brain. The changes in mine, from soft spot to lump, to bigger lump, to collapse, happened quickly, over the course of about 6 weeks in all.
Hope you can get a swift resolution.
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