[MothasParticipant]

Hi Charlotte,

Please don't take my case history as something that's common for people with plasmacytoma, this disease develops differently for everyone.

I feel bad that I've unsettled you.

I'm sure you are fine but you are certainly not 'making a fuss'. You have had treatment for cancer not a few sniffles. I'm sure your consultant will be very supportive.

Your GP can also refer you and is obliged to. I try to keep my GP in the loop with all my treatments with cancer referrals – they don't mess around. With your history I can't see how you'd be refused.

Let us know how you get on, but I'm sure you'll be supported in your requests.

tom

[MothasParticipant]

Thanks for posting, I've read around this subject before. I think we need a lot more research before we can be certain and it's always difficult commenting on these issues from a non-expert point of view.

Certainly for some sections of patients SCT is a very effective treatment, but hopefully in the future such will be the efficacy of the combo therapies – the novel approaches, that it become something that's superceded.

I'm facing an SCT in the new year with some trepidation.

tom

[MothasParticipant]

Thanks Megan, sorry to hear your move to Devon didn't work out and hope you manage it sometime in future.

[MothasParticipant]

David thanks for your input.
Yes, it's daunting, I realise how vulnerable people are when going through these kinds of things.

I'm up for it though and I have a wonderful wife and family supporting me.

[MothasParticipant]

Helen that was great thanks for the detail. Very useful.

Great news you have saved SCT for another time and hopefully you'll never need it.
I think my bones are in pretty good shape but I'm a little bit nervous of the SCT.

I had Dex before. I hate it, it makes me really grumpy! And the lack of sleep, but I guess it's better than the alternative. Perhaps I'll ask for some sleeping pills.

Looks like I might need to splash out on some hats too….

tom

[MothasParticipant]

thank you, this is a great forum. I've learnt a lot even in just the past 24 hrs.

t.

[MothasParticipant]

Thanks mate, maybe I should call myself Tommy to avoid confusion 🙂

You sound good, I'm irritated it's getting in the way of an interesting working life for me.
I hope to return although I realise that I'll be having to take life in a different way than before.

best wishes

Tommy

[MothasParticipant]

Thanks Vicki, I hope your husband goes from strength to strength.
As a matter of interest how is he bearing up from what is a month or so after his SCT?

I've done a lot of research into myeloma and although I'm thoroughly pissed off that my disease has developed sooner than I hoped it would, I'm hoping we're moving into a period of it being a chronic disease with all the new treatment developments.

thanks again

tom

[MothasParticipant]

Megan thanks so much for the reply.

I'd be interested to know of any other side-effects that your partner suffered (hairloss etc). Also did he take time off work. I had 9 months off last year and would prefer to work as long as possible this time. I realise i can't work during the stem cell treatment.

Perhaps I'm being completely mad thinking I can work at all during chemo. Would be interested in other people's experiences.

all the best

tom

[MothasParticipant]

Charlotte please don't panic. I'm sure if you request one they will arrange if for you.

I was at Mount Vernon, but the team is the UCLH team as they cover both hospitals. My next treatment will be at UCLH but all the scanning takes place at Mount Vernon which is north west london.

[MothasParticipant]

Hi Charlotte thanks for the kind words. Kind words go a long way even on the internet 🙂

After my treatment for Plasmacytoma I was on a 3 month blood test regime and a yearly MRI scan. I only finished my radio treatment in Feb, so this MRI scan was to confirm that the treatment had dealt with my shoulder – which it successfully had.

Unfortunately or fortunately depending on which way you look at it, it also showed some very subtle indications that there was disease progression in different areas. My bloods are good there is no sign of increases in protein levels or anything else.

My specialist told me that as the activity is so subtle and early it would only show up on MRI scans. So that's how they have caught it.

It's very rare this disease and like you I struggled to find anyone else in a similar situation or clear advice on the Internet.

I believe it really depends on where you are getting your treatment but, my advice is that you insist on regular (perhaps 2) MRI scans a year alongside your blood tests. The earlier they catch it the better.

It was part of the regular protocol where I am treated, so I guess I got lucky.

I'm phlegmatic about it, or I'm trying to be. I'd always thought it was likely to progress.

I hope your's doesn't or not for many many years

tom

[MothasParticipant]

Hi Charlotte,

I've copied this from another post I made.

[quote]I've just been diagnosed as having MM after being in remission from Plasmacytoma for 6 months.

Plasmacytoma is also known as solitary plasmacytoma as it's an incidence of a single lesion rather than multiple (hence multiple myeloma). In many cases it doesn't progress to full myeloma but for most it does. It has for me.

Last year after severe pain my my shoulder they discovered the lesion and treated it with 3 cycles of cyclophosphamide and Dexamethasone followed by 5 weeks of radio therapy. It seemed to successfully zap it so I was happy.

Alas, rather than the many years of remission I was hoping for, I've been dealt a different hand of cards. They've found evidence of multi focal progression in 4 areas of my back, which are in very, early stages and I am now fully upgraded to the MM community. [/quote]

My understanding (I am not a medic so treat with caution) is that Plasmacytoma progresses to full MM in around 65% of cases. It is very rare but you are in a better postion that people diagnosed with straight MM. It may never progress or not for many years. Progression is also impacted by whether it's in the bone or outside of the bone. Mine was in the bone which made progression more likely as was ultimately the case.

all the best

[Author]

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