Hi Linda,

Thanks for your reply. I spoke to the Macmillan nurse yesterday, who told me much the same thing, i.e. that they wouldn’t really expect the lesions to get smaller at this stage, and that they go by the paraprotein level, which was apparently “zoning” when they last checked it. I think this means it’s present but too low to quantify. But…[Read more]

Tom, what a bugger. I’m so sorry. I see this was a few months ago – how are you doing now? How are they tackling it?
I haven’t been on here for a long time, but have been thinking of you. You were right about my plasmacytoma progressing. I wasn’t in the lucky percentage; it did so after just over four years. I’ve completed 4 cycles of VTD and have…[Read more]

Tom – I just popped back to see how you were doing. Very glad to hear you are getting the transplant soon; I really hope it all goes smoothly for you. I'm sure you'll have plenty of friends and family looking out for you, but if you would like this strange face to pop round and say hello as you recover, let me know.
All the best and stay…[Read more]

Hi Tom,

After scuttling away to put my head under the pillows and sing 'la la la' very loudly after your last posts, I've come back briefly to take a quick sideways look at the website to see how you are doing. Very glad to see on another thread that your treatment seems to be going well, and seriously impressed that you are managing to do so…[Read more]

Oh sh*t. They haven't MRI'd me since I finished treatment two and a half years ago. My bloods are fine. I feel slightly sick now.

Are you at UCH? I'm at St George's. I think they're very good, but MRIs don't seem to be part of the standard follow-up.

Hi Tom,

I'm so sorry to hear your story. I can only imagine how you are feeling right now, and hope that whatever treatment they decide to give you now will succeed in keeping it at bay.

How did they discover the new areas in your back?

I'm actually acutely aware of the negative risks and percentages and likelihood of progression. What…[Read more]

Hi Carolyn, and sorry to reply only now.

Only 40, my God. I was (only just) 43, and Meera above is only 34. They told me the majority of people with this disease were over 60, male, and Afro-Caribbean, which was why it hadn't occurred to them to look for it in me!

What did your recent blood tests say? I'm wondering why your doctor doesn't…[Read more]

Dear Meera,

Thank you for your reply and sorry not to have written before. I also really hope it doesn't progress for you – 34 is ever so young. What did your recent MRI show? Does "re-staging" just mean reassessing the stage of the disease?

I was also told 50/50, but I'm very heartened to hear you were told that the risk drops after 5…[Read more]

Liz, thank you for going into detail about the spinal fusion. I'm not sure what you mean by flexion activities; do you mean bending backwards so that the vertebrae are compressed?

I spoke to the orthopaedic consultant last week just to find out more about this, and he set my mind at rest. He explained that the operation would involve removing…[Read more]

I wish this site had a "like" button like the one on Facebook!
I just wanted to say that those were very good posts, Dai and Paul (to which I am coming about a year late…), especially re. managing other people's reactions, keeping a note of side-effects, and staying positive.
Charlotte

Hi Carol,
I'm sure others can give more useful advice than I can, as I've not experienced any of what you're going through. I just came across your post and wanted to send my love and best wishes, positive thoughts, whatever, for your recovery.
I think there's something especially scary about the thought of it coming back when you've been…[Read more]

I'm answering my own question here, in case anyone else would like to know what the registrar told me when I asked her today. She said that yes, she had come across people for whom plasmacytoma had been a one-off occurrence and had not recurred in 15, 20 years or something along those lines. It's great to know that this is possible. I think the…[Read more]

Hi Vicki,

Blimey, Colin has been through the mill, hasn't he. I hope he's doing okay now?

The fracture sounds very similar to mine, at least in the position, but as I understand it if they have told him he has MM this is different from solitary plasmacytoma even if at present he only has one lesion. They did a bone marrow biopsy on me to…[Read more]

Hi Liz – thank you very much for replying.
I seem to have had "no visible paraprotein, no Bence-Jones protein" since finishing radiotherapy, which judging by what people are saying here makes me very lucky.
I'd be very interested to know how you feel about the spinal fusion, if you don't mind answering…? namely: was it a big operation? Did…[Read more]

Thanks, David. Glad to know you're doing well. I hope your check-up was fine.
I also broke my back getting out of bed, to answer the phone – the insurance company who'd called me ended up calling an ambulance!

I've wondered about scaffolding. They wanted to put it in at one point, but I resisted as I couldn't face another op at that time, and…[Read more]

Thanks very much for your reply, Ellen. I was getting quite worried that no news was bad news. I suppose it's a bit too much to hope that someone is going to come on here and say "I had a plasmacytoma 30 years ago and have been absolutely fine ever since!", but hey, you never know…

That's also partly why I wanted to post here and say that…[Read more]