Hello everyone

Husband diagnosed with high risk , velcade resistant MM ,actually he had plasma cell leukaemia, in 2017. VT PACE and an auto SCT got him into remission for 18 months. revlimid/dex followed for 12 months but barely worked then he got on a clinical trial (not the arm we wanted) and had daratumumab, pomalidomide and dex – we have found out today it has not worked. We are now told the only option is panobinostat or palliative care. The consultant was not very encouraging about panobinostat because of the side effects so my husband is veering towards palliative care.

Can anyone suggest any other treatment or point me towards anything/anyone that might help – second opinion a good idea? the consultant would not consider carfilzomib which i heard would be used in the USA at this stage but not approved by NICE.

To add to our troubles he fractured 3 vertebrae just before Christmas and I am destroying myself thinking that he should have been on zometa to protect his bones – he was never offered this treatment.

My thanks Carol