[myelomamumParticipant]

Thanks for replying Birder,

I am hoping i can stay strong throughout the treatment , i am scared of what is to come and how i will cope. I hope the new drug you mentioned works well for you

[myelomamumParticipant]

Hi John

I have received more news today that i now have deposits on tops of both legs and on an area of my spine. I am to start treatment in a couple of weeks , my paraprotein is low at 12.1 and bone marrow biopsy showed 8-10 % plasma cells .. does any of this relate to you ? The radiotherapy left me a little nauseous and pains in legs but only for a few days.

[myelomamumParticipant]

Hi

I too was diagnosed after finding a fracture in my l1 vertebrae . This was July and i am still awaiting a treatment plan, i have a plasmacytoma on the vertebrae so having 1 blast of radiotherapy this Wednesday. Im July my paraprotein was 13 and last week bone marrow biopsy showed plasma cells of 8-10%. The consultant wants to do a full body mri this saturday and i have done more bloods to see if there is an increase. It has been so much to take in , i am 55 with my youngest children just 10 and 13 , im wondering how i can manage to be a good m while going through the treatment and the possible side effects. It had been so good to find and read this site and forum , I hope I can ask questions as we all go through this journey together

[myelomamumParticipant]

Today I was told am will be have 1 A grade radiotherapy blast next Wednesday , he said 1 is enough. In the afternoon I am seeing the haematologist consultant to discuss blood results and the possibility of starting chemotherapy.Not the news I wanted as was hoping not to start chemo just yet and see how the MM progressed but I know whatever is suggested is for my best interests.

[myelomamumParticipant]

My husband is coming with me , its seems as if its taken ages as it was July when I had my fracture. Does your husband still get pain in his fracture area.. I do.. even though they seem to think its healed.

[myelomamumParticipant]

It seems your husband was very lucky. I have had a phone call today for an appointment tomorrow to meet my oncologist and to get a radiotherapy treatment plan which had brought great relief. My plasma cells are 8-10% so a little higher than your husband and my paraprotein was 13 so also higher. my haematologist thinks i am either smouldering MM or it is active. More bloods on Thursday and mri next week are planned.

[myelomamumParticipant]

I live in Wrexham , North Wales but i believe any radiotherapy treatment is done in Glan Clwyd Hospital which is a 40 minute each way drive for me. I am currently working full time but work have already said they will support all my appointments.On diagnosis of the plasmacytoma did your husband also have marrow bone biopsy and what was his paraprotein levels ? Mine were 13. Because my bonemarrow showed 8-10% plasma cells this is causing the Consultant to review me again as wants to be sure myeloma is active or not.

[myelomamumParticipant]

Wow everyday for 5 weeks sounds really gruelling. Once I have the full body mri I expect they will then decide a course of treatment , I just want it to start. Since my fracture in July I have no checks to see how it is healing , whether the plasmacytoma is growing and could cause nerve damage ? It has been a nightmare 3 months being passed from one department to another and still no real diagnosis. Let’s hope the next 2 weeks I finally start some treatment.

[myelomamumParticipant]

thank you for your replies , i found out today i am to have a full body MRI scan and some more blood tests. This is to see if myeloma is active anywhere else , if it isn’t i believe i will be monitored regularly. For the plasmacytoma i am expecting an oncologist appointment and then a radiotherapy treatment plan. Do i need to do anything health or diet wise ? Just wondering if anything helps. Xx

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