[misterboyParticipant]

Hello everyone,

A relative newbie here who is somewhat confused and hoping someone out there might be able to help from their experience and/or knowledge.

I was diagnosed with a plasmacytoma in my thoracic spine in February this year which needed emergency surgery to remove it.  Following some dexemathozone, I then had 5 weeks of radiotherapy.  Since then I had expected that my symptoms would disappear and my kappa free light chains would decrease to normal however things have been quite the opposite.

i continue to have a lot of pain in my back, and in addition I also have pain in my lower back and my right ribs.  I am always tired (am normally used to being on the go and exercising regularly), and my breathing is laboured making me cough a lot which I gather is due to the radiotherapy damaging the top of my lungs (?).  My kappa is in the 700’s and my lambda is 3.5, and a ratio of 191.

My question are two fold – 1. does this look like progression to myeloma and 2. TAking my symptoms and results into account should I be expecting treatment anytime soon (so hard to plan life when you don’t know, as I have also read and come to realise from other threads).

any advice or pointers would be great fully appreciated.

[avrilro55Participant]

I would bring this question up to your consultant or ring the Myeloma nurse. I had a plasmacytoma on my right octipal bone January 2014 had 5 weeks radiotherapy tomget rid of it. My light chains were about 350.  Was put on four months CDT bringing my light chains down to about 30 have had no further treatement since. However, my light chains have to strted to rise gain to almost 300 although all other bloods good. My consultnt suggested. Full body scn which i had last Friday to check if everything still ok? Have no pain so feel optimistic re results which i will get when i see consultant again on 27 October. Am planning a winter holiday so hope i do t go back on treatment yet. Which hospital are you under. I am under Addenbrooks.

[misterboyParticipant]

Thank you for your response Avril.  I will indeed be speaking to my consultant about it but was really looking to gain an idea of other people’s experience of when/what point treatment started in terms of kappa/lambda ratio plus other symptoms (if any).  For example is there a ratio that would be treated even if there are no other symptoms?  Lastly, when does a plasmacytoma become MM?  As many people say on here, MM is very individual and therefore I am just trying to get a picture and not necessarily any answers (I hope that makes sense!).

all the best.

[avrilro55Participant]

I was told that because i had a plasmacytoma they automatically do a bone marrow test as in most cases this is a precursor to myeloma and with me this was correct although my light chains were very low they erred on the side of caution and started me on 4 months treatment. I was given to understand this is normal when a plasmacytoma is discovered. Did your consultant not explain this to yiu. Perhaps different hospitals operate under different situations. They look at the whole picture not just paraprotein/ light chain levels. Your consultant should give yiu all yiur answers. Are you under a haematologist specialist? Which hospital? Hope all goes well.

[misterboyParticipant]

It does seem slightly different, i had surgery to remove the plasmacytoma as it was wrapping itself around my spinal cord, following that I had the bone marrow biopsy which I gather was ok but my light chains have been steadily climbing since then despite the radiotherapy too.  Yes I am under a haematology specialist at leicester.

All the very best.

[avrilro55Participant]

As you rightly say, we are all different. Be interesting to hear how you progress. Wish you very good luck and good news. Avril

[lizfParticipant]

Hi I had a plasmacytoma of L5 with collapse of said vertebrae in February 2011. Treated with kyphoplasty spinal fusion L4-S1 and 5 weeks radiotherapy. Been on 2 monthly bloods and watch and wait till Oct 2014 when I had an increase in back ache paraproteins had increased slowly overtime. On diagnosis pp was 8 and after MRI scan in Oct found more spinal activity of mm with pp of 39. I was then started on bis phosphorites monthly and myeloma X1 trial on CCRD. After first cycle pp down to 11 and after 5 cycles down to 2. I then went on to stem cell transplant in July this year which wasn’t as bad as I had expected and now described yesterday after 100 day marrow biopsy to have MRD minimal residual disease which is a good indicator of longer remission. I am 52 married with 3 boys and I am back to normal activities and play tennis twice a week and now feel normal. Now able to plan ahead and put mm aside apart from 2 monthly reviews. I hope this helps.
Liz

[misterboyParticipant]

Hi Liz.  Its tremendous to hear you have made such good progress, it sounds like you went through a lot in 9/10 months but have come through it well.  I am particularly impressed that you are playing tennis again – if there is one thing I am missing it is my sports; I have been doing a lot of walking and some on my exercise bike but that is not the same as going out running or on my mountain bike.  I am still getting an awful lot of pain in my upper back and have recently started to get weakness in my legs, particularly if I have done any exercise at all.  I have had my PET scan which seems to have shown some activity in the original thoracic site and another in my lower back.  I am now waiting for another BM biopsy before we know where we go with this…. I hate the waiting!!  How long did your SCT take, from initial treatment, hospital stay and recovery?

All the very best

 

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