[piscesParticipant]

hello, I am Val, often found nosing around this website but not joining in…just taking in information etc. Albert my hubby aged 62 has numerous problems with his health along with being diagnosed having Multiple Plasmacytoma over 6 years ago. He has very bravely taken so much in his stride but now more problems are arising.  Most people are amazed Albert is still with us after having so many ops and illnesses. The latest is the fast growing lump on his head…not for the first time. The difference this time is that it is not sinking into the usual hole…it just keeps on growing but the hospital don’t seem overly concerned about it? Could this be Extramedullary Plasmacytoma? if so….what next to expect? any replies will gratefully received x

[ellenModerator]

Dear Val

I am sorry that, as yet, no one has responded to your post. This may be because no one on the Forum has experience of extramedullary plasmacytoma; I hope this won’t put you off posting on the Forum in the future.

As you know, plasmacytomas are areas of localised build-up of abnormal plasma cells which form lumps or tumours. These can occur either within bone or outside bone where they are called extramedullary plasmacytomas. Most extramedullary plasmacytomas occur in the head and neck region, particularly in the upper airways (nose, throat and sinuses).

For an extramedullary plasmacytoma to be diagnosed often a biopsy of the lump is required , MRI scans are also particularly useful in identifying plasmacytomas and for monitoring their growth. Treatment for plasmacytoma is generally radiotherapy.

I hope this has been of some help but please do not hesitate to get in touch if you have any questions – I or one of my colleagues will do our best to help. We can be contacted directly by email to askthenurse@myeloma.org.uk or on the freephone Myeloma Infoline on 0800 980 3332

With best wishes

Ellen

[beetlejuice54321Participant]

Hi val

I’ve suffered from a very rare extramedullary presentation of a plasmacytoma in my lymph nodes. They are basically a build up of myeloma cells outside of the bone marrow. There are lots of treatments for them, but the best option in my experience is high dose melphalan as part of a stem cell transplant. If the plasmacytoma is localised it might be able to be removed by surgery. Radiotherapy can also be curative for these types of tumours. You need to get clarification from your doctors the exact nature of the problem so it can be treated.

 

good luck.

[mhnevillParticipant]

Hi Val

Welcome to the Site as an active member. I’m sure Ellen is right about no having your husband’s particular kind of plasmacytoma. I was diagnosed because of a plasmacytoma which was compressing my spinal cord. It was successfully removed by surgery and metal support put in my spine.

I do hope they decide on a regime of treatment for your husband soon. He is obviously a fighter and that goes a long way with this horrid disease.

Best wishes to you both.

Mavis

[piscesParticipant]

Thank you for taking the time to reply to my post. Albert is due for an MRI scan on his head next sunday. Meanwhile the lump is still growing, once again he has holes appearing in his skull..i am surprised he has enough bone left for them to eat through. He has had radiotherapy on his spine about 3 years past. Last year he had a pin placed in his thigh as the bone was almost falling apart. This week he has an appointment with his Rhuematologist as he has suffered with severe ongoing rhumatoid arthritus for the past 20+ years. But apart from all this, his main problem is stomach cramps which reduce him to tears as no-one still has given us a positive explanation of the cause. Albert had his lower bowel removed after unbelievably being diagnosed with bowel cancer 4 years ago…..so yes, he really is a fighter but losing weight and buckling under lately. I am sure you can all imagine the stress and depression he is going through…and yes, it does rub off on me. But reading through this website is very helpful. So inbetween work and running around, i will make time to visit you all on here.

• This reply was modified 8 years, 11 months ago by  pisces.

[finnParticipant]

Hi Pisces

Sorry to hear about your husband’s troubles. I was wondering, have they scanned his stomach area to rule out plasmacytoma in the guts? If I remember correctly, they are commonly found there too. Best of luck with the treatments

[piscesParticipant]

hello again,

Mavis, my hubby Albert was never down for having SCT. They thought it would be too much for him to take with every other problem he has. He too had the compression on his spine which was treated with a course of radiotherapy. Also along with his RA he has ostio arthritus on his spine. Just recently he had the camera into his bowel. Finn, if he has plasmacytoma in the guts…would this have shown up in his bowel investigation? His lump on the head is now found to have a smaller friend growing at the back of his skull. Now we have to wait for his MRI scans on sunday. It really is a horrible disease and my heart goes out to you all.

[Author]

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