Hello
I was wondering if there was anyone who had experience of a solitary plasmacytoma which was successfully treated and didn’t progress to multiple myeloma?
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Hello @Chrissy2 and welcome, I cannot help medically and I hope someone will be able to share their experiences.
It sounds an anxious time for you and this is also a good question for your medical team.
If you would like to talk to someone the Blood Cancer UK support line details are above and we are here to support you.
I would be interested in hearing more about you.
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Hello Chrissy
I was diagnosed with solitary plasmacytoma back in May 2018. I had been back and forward to GP with upper back pain since March . I had almost given up asking for help at the doctors but my husband insisted on taking me to a physiotherapist. She was completely baffled at first but suggested there might be a fracture in one of my vertebra! She advised going back to GP and demanding an xray. Do not take no for an answer was her advice.
After many scans etc which I’m guessing you might be familiar with I was told solitary plasmacytoma and would have radiotherapy. The consultant estimated that it had been there about 6 to 9 months.
Now the end of May I started getting very sore ribs. A PET scan picked up a couple of tiny lesions. It was now myeloma even though paraprotein was still very low and bone marrow normal.
I think it just shows how individual an illness myeloma can be! It was a huge blow, but I suppose I was grateful that it was picked up at that stage and dealt with.
It can be a lonely, scary and confusing time though. Trying to explain what is going on to family,friends and work colleagues when you barely understand it yourself.
I wish you the very best of luck with any treatment you may need going forward. This forum
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Hi @Lockdownsue60 I spent ages at the GP and an osteopath in terrible pains in my back, I was told it was pulled muscles.
I had an xray and I had fractured vertebrae old and new. Now they realised in what pain I had been !!!
I am now pleasantly assertive and medical appointments.
You must have been in such pain.
You must have had so many shocks with different diagnosis and during Covid times, yes, it must have been a very lonely, scary and confusing time for you, not easy.
What really resonated with me were your words ‘Trying to explain what is going on to family, friends and work colleagues when you barely understand it yourself.’
I have said them so many times.
Look after yourself and keep posting, we are here for you.
Hi both, thank you so much for your kind replies. The bone marrow result,PET scan and blood tests were all normal but I know there is an extremely high chance of getting myeloma.
It’s a rare cancer and it’s a shame that it takes so long to pick up.
Would you mind if I ask if the para protein was always present in your blood?
Thanks
Chrissy
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Hi Chrissy
In answer to your question as I remember it I did have a paraprotein level of 13 when diagnosed with the plasmacytoma. My consultant said this was consistent with a diagnosis of MGUS only though. It wasnt until the PET scan that tiny lesions were spotted on my ribs that then led to the diagnosis of myeloma. This, of course then meant a whole different approach to treatment.
If your tests are coming back normal then that must be good news?
However I completely understand how alarming all this is. The uncertainty can be very hard to deal with. Your mind just races. Try not to Google too much! Easier said than done I know. A lot of the information out there is definitely out of date though.
I do hope things become clearer for you soon and you can see your way forward with a treatment plan.
Best wishes
Sue
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I was diagnosed with Myeloma straight off with a para protein level of 29 though nobody explained any of this to me at the time, I had to look things up later. Within a month of treatment it was down to 3 and then no trace ever since.
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Hi Sue
Thanks for your reply. I really hope that treatment is working well for you at the moment.
Yes the consultant said it was looking positive, although can’t guarantee that something won’t pop up at a later date.
I have read that they now have a gold standard tests for diagnosing solitary plasmacyoma. Good luck with everything x
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Thanks for the reply. Glad your treatment is going well x
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