Dear ALL ,
First of all TE= Transplant eligible
I am the patients’ representative (put forward by myleoma uk)on the steering commmittteee of this trial
Also for your information I am a retired consultant Physician .I have had myeloma for 13 years (6 years smouldering), had 2 ascts and now in my longest remission on Isatuximab/ Pomalidomide and dex. I have been on this forum many years and learnt a lot from fellow patients and sometimes hopefully reciprocated with advice.
This trial has been delayed because of covid but I think is about to launched not just in leeds or london(as on clinical trial finder) but elsewhere .
There has just been notice of an amendment to the protocol which keeps the treatment up to date and of benefit to high risk patients .
The benefits of this trial compared with Standard available therapy VTD and indeed daratumumab-VTD which nice may sanction
1)Risk STRATIFICATION early on with all high risk patients given more aggressive tx with new amendment if approved
2, multiple treatment arms with escalation for poor responders (MRD+ve) and most arms having MAINTENANCE treatment after ascts and until relapse .
3) most importantly of all LENALIDOMIDE ( not thalidomide which has been exclusively used only in the uk for the past ten years + when the usa /europe abandoned its use as an induction agent ( least effctive/most toxic but least expensive hence nice approved … see hundreds of similar views on this forum over the years )
It is a very complex trial which is difficult to precis in an email but
Every one recieves quadruple induction thrapy RCy BOR D =lenalidomide , cyclophosphamide ,bortezomib( ALSO known as V for Velcade confusing ????) and Dexamethasone ( see many threads on the problems with the bad days on dex )( high risk may have isatuximab at induction quintuple regime if new protocol adapted )
considation regimes include additional isatuximab followed by a mixture of maintenance regimes .
I could go on but I will try to help with the many queries that you will have that cant be answered elswhere on this site or you thought of after speaking to your clinician . It is lot to take in is an under statement !!!!
Best Wishes
michael ashton ( ex docmike)
ps I need to put a thread on AZD 7442 on covid prevention soon
