Hi coasti, yes it was a strange time the second time. In hindsight, I probably didn’t need the second SCT. I had had 5 years of partial remission and was very happy with it, no symptoms. But I developed a terrible pain in my shoulder which I thought was a trapped nerve but was referred back to Marsden who put me on carbamazepine – a nerve pain drug which had worked wonders before. Also MRI showed large mass which they thought was plasmacytoma so was measured up for radiotherapy. Meanwhile heap developed severe jaundice and had hepatitis tests etc and liver biopsies and sent for amyloid scans at NAC at royal free hospital. And worst of all, a biopsy of the mass which meant a neuro surgeon at another hospital as the only way in was through the top of the spine- scary place where every patient had shaved head and metal clips over their heads. I too went back to Marsden with line of clips down my neck. Jaundice was getting worse despite the royal free being certain no new amyloid so the Marsden decide to do the SCT anyway – and four weeks later when the jaundice was still bad, they decided on a tandem transplant straightaway to be done on Christmas Eve! My mother gate crashed the staff Xmas party to find my consultant to plead for me to have Xmas at home with my family – and he finally agreed with a view to the SCT on 27th December. Luckily on 27 my bilirubin had gone down slightly so they hung on – and eventually changed their minds as I improved, my liver didnt recover for months- a year with no wine! Terrible! And I think the jaundice was caused by the carbamazepine drug- and I never knew what had caused the pain! But the good that came out of it was over 10 years full remission – so it was worth it- although very scary at the time as I don’t think my body could have coped with the tandem! Sorry such a long story! Good luck to your husband – I’ve only just started posting on here but have been reading others posts and they are very helpful – and I ring the myeloma helpline with my problems and they are very good.
jane x
