Hi Everyone, I went for my follow up today after being told by my Haematologist last week, that she was 80% sure my MGUS had turned to myeloma and that I may need to start chemo. My Haemo had a video conference with a big UK cancer specialist hospital, with several myeloma specialists in attendance. STILL they are not sure whether I need chemo, some said I did and some disagreed, in the end they told my haemo it was back to her to decide the best course of action for me. I am such a difficult case that no one seems to know what is going on. I asked for a diagnosis and my Haemo says I now have smouldering myeloma. My latest results are the same as the ones from a week ago
Bone Marrow Plasma 25% IGg paraprotein 44.8 (UK) 4480 (US) IGM is too low IGA is too low All other bloods and urine are fine B2 microglobulin is being tested Blood viscosity is being tested Blood and urine taken again today dont know when I will get the results. I forgot to ask for the results of my MRI which was done on Tuesday 4th March.
Due to my recurrent infections my Haemo suggested to the panel of specialists that I may benefit from Immunoglobulin transfusion, some of the panel said it could work and others disagreed, but my Haemo has said it wouldn't hurt to try it. I have now been signed over to the care of the cancer unit (Macmillan Unit) at my hospital, rather than the Haemo department. I Have to attend on Wednesday 12th March at 09:00 for my first transfusion of SANDOGLOBULIN, it will take all day as if it is done too fast there is a risk of blood clots and/or allergic reaction. If my blood is already to thick/viscous then I wont be able to have the transfusion until my blood is thinned out. Sandoglobulin is basically a mixture of Immunoglobulins from a variety of blood donors, its heated and dried to help remove any viruses such as HIV and Hep C and then it is mixed with saline and hooked up to an IV drip. I have agreed to try the treatment but I am obviously worried, but its got to be better than starting chemo.
Has anyone ever had this treatment? Does anyone have any info on this treatmet? Any comments or help would be greatly appreciated many thanks love from Jane x