Hi Rebecca/Eve,
I believe both your views make a lot of sense when it comes to the potential effect on moral if the answers to the questions might not be what you hoped to hear. I believe that within all the facts and figures GP’s have an incredibly difficult balancing act to provide critical information without deflating the patient or carer. I personally have overdosed on the myeloma beacon and every other article published tom,dick and harry. For me it has helped in the first months with the odd setback when i don’t like certain results or prognosis.With regards to cytogenics what i find puzzling is that certain translocations and risk rating can be reduced by the use of certain drugs. There is very strong evidence that t(11-14) intermediate risk if treated with Veclade specifically would change the risk to standard and the associated prognosis accordingly. If my consultant has started my regimen without consideration to fish array results it could be doing me more harm than good. I have a plasmacytoma and clearly most reviews online indicate thalidamide is ineffective in the treatment and certain articles state it actually assists in growth progression. With regards to tailoring ones treatment as in the states i am very lucky to be in BUPA and have limited options open to me so a little research and probing questioning may influence the direction i may go moving forward. I will be taking both your advice on not pushing for further information on my lesions as he was very reluctant to tell me the exact amount but will console myself that my first bone infusion will take place on monday.
Eve I confess to being clueless as to how to move forward as a carer. I could only hazard a guess that if as the carer you ensure you receive all the information on then decide what is appropriate for Slim (as you know him better than anyone). But then in turn who protects you from unwanted information and the effects it may have on you?
Best regards,
Stanley
