[myelomamumParticipant]

m 55 years and have had a roller coaster 4 months

After suffered a back fracture i was diagnosed with a plasmacytoma which i have just had 1 radiotherapy session for. Today after a full body mri scan i have been told i have myeloma deposits in tops of both legs and another area of my spine. Mri also showed something non specific on my liver which i have to have more tests for. My next consultant appointment is 22nd November where the treatment plan will be discussed , i believe it will be 3 or 4 cycles of various drugs including chemo and then a stem cell transplant after this .. I feel absolutely gutted , currently i feel fine , just aches in back , my paraprotein is 12 and bone marrow biopsy showed 8-10% of plasma cells. Im worried about the treatment as my youngest 2 children are 10 and 13 , i work full time and my husband works 3 weeks in USA then 3 week home .. looking for reassurance and what side effects am i looking at with the treatment plan ….. Sue x

[birderParticipant]

Sorry to hear this, I currently have 7 plasmacytomas, all quite small and not painfull. I saw my consultant last Monday and he has said stem cell treatment was not going to work as I have already had the same chemo i had to try and get rid of a big painfull plasmacytoma on my right shoulder which broke the bone, radiotherapy got rid of it not the chemo. I’m currently on steroids as per the protocol they have to follow before he can issue the the level of drugs- which is november 4th. I’m really hoping the next level of drugs can control these plasmacytomas and the disease in general.

I have done some research and there are new drugs available on the NHS, sorry i can’t remember the names and not sure if they are only for people who can’t have stem cell treatment for various reasons like me or they may not work for me. I am concerned about side effects but I have to go with it.

It’s hard , I’m a carer for my wife but fortunately we have help from her son.

We just take 1 day at a time.

Take care

[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

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