Hello,  I have had 3 weeks treatment on Velcade and Dex and find that two days after the injection I have a burning prickly head and chest and feel so bad I can’t cope with carrying out basic things.  This lasts for 3 days and then leaves me with less severe symptoms.  I also have more swollen legs and ankles and have put on half a stone in wei…[Read more]

Hello Denise.  I had the results of my mri scan of my spine this morning and was told that they couldn’t see anything wrong.  I can’t think what is causing this burning and tingling in my shoulders, arms and head so I have asked to see a neurologist.

Does anyone else out there have these symptoms – they are so hard to live with.?  My husband pa…[Read more]

Hello Denise.   Yes, I have smouldering myeloma and have burning and aching in my shoulders, around my ribs, and into my head……very unpleasant symptoms to live with.  I have not had any treatment yet but am seeing the consultant tomorrow for the results of an MRI scan of my spine.  I’m very worried about it all.

I also have AL amyloidosis wit…[Read more]

Hi Pat.  Thank you for this.  I’m sorry to hear that your protein loss is still high – it must be disappointing.

My protein loss is high and my albumin level is 15 and this is the main reason for recommending CVD treatment as the amyloid deposit is on my kidneys.  They are concerned about further damage to my kidneys.  My FLC are now only 54.…[Read more]

Thanks Maureen.  I’m sorry to hear that your consultant rejected the cyclophosphadmide – I can’t understand why. I hope you have some success with the Western General.

My FLC are 54 (lower than they have ever been) but my consultant is recommending the treatment because of my low albumin level 15 and my protein loss.  This is apparently caused b…[Read more]