[MeeraParticipant]

Hi Adrienne

My symptoms were quite varied. I have severe bone pain associated with the sternum (except I didn't know that was bone pain). It was often excruciating but I felt it very difficult to describe. It was painful just to touch my chest area let alone apply light pressure. I also had muscular pain in my back, neck and shoulders. I found I have reduced ability to use my arms such as pushing and lifting. This was probably associated with the pain and the tumour position/size.

I'm 18months post treatment, my mobility had almost returned to normal and my pain has reduced significantly. Cold weather makes it worse.

How are you feeling? Have you got a diagnosis?
Meera

[MeeraParticipant]

Hi Richie
Sorry for the late reply, just seen this.
I understand about the frustration of being restricted, I am still struggling with upper body strength and mobilty.
Good luck with it all and hope things are getting better for you.
Meera

[MeeraParticipant]

Hi Charlotte
I was diagnosed woth solitary bony plasmacytoma in my sternum in May 2011. I had steroids and 5 wks of radiotherapy. Following treatment there was no paraprotein trace but I still had high serum free kappa light chains. These gradually reduced at each blood test but it took until August 2012 for them to return to normal levels. My PET scan in March 2012 showed there was still some activity in the sternum but my Haem felt this was more likely to be signs of bony healing over actice tumour cells (although nobody can be sure). She stills reminds me that I have had definitive treatment and we should watch and wait. I had a second opinion on this and he agreed. I have just had a re-staging MRI so we'll see what that shows.

In terms of the future, I have been told that I have a 50/50 chance of progression to mm, but this decreases after 5yrs and then peaks again at 15 yrs. I am 34 and really hope I don't progress.

I'm really pleased that life is almost back to normal for you. I still have a lot of muscular pain in my back and shoulders, plus upper body weakness ( they think because of the large size of the tumour). The bony pain has reduced in the last few months.

I've stopped looking for stats now as it caused far too many sleepness nights, as I realise there are so few of us, but still get really anxious about test results before each appointment.

Anyway good luck
Meera x

[MeeraParticipant]

Hi Suru

How are things going with you? Is you appetite any better?

At the moment I am having blood tests every couple of months, my kappa light chains have decreased but are still present, and I had an MRI at the end of Sept when they suspected the fracture. The tumour didn't look any different compared to the pre-treatment scans at that stage. My team plan to do a PET CT some time in the new year.

Take Care
M

[MeeraParticipant]

Dear All

Thank you all for your replies. It's been 3 months since I completed my treatment. After that I then has a suspected fracture of the sternum, probably because it was weakend by the tumour. Well that made life difficult for a bit! Anyway things are getting better now. Fortunately my enery levels are picking up, as my now 13 month old is getting more active.
Yes I have been very lucky to have help from family members and my husband has been able to work from home some of the week.
Now I am concentrating on building up my upper body strength.

Meera

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