Dear Alessandro Liberati,
I was really touched by your article ‘An Unfinished Trip through
Uncertainties’. I do not have a medical background, so I will write about
my personal experience. When some months ago my mother was discovered to
be affected by MGUS and subsequently by smouldering MM I had to decide if
the right choice (since hearly treatment is not currently advised) was to
let her know or to keep the results of the analysis secret until possible.
As a matter of fact, quality of life drastically changes when the illness is
known and the lack of possibility of early treatment makes you feel
powerless and lonely, especially when your family is involved. The
uncertainties of the new studies and above all the lack of a long term
therapy, able to grant the complete remission of the MM make decisions
hard to be taken even by people with great medical background. So I wonder
if we can give our contribution to make some improvements. Is there the
possibility to share knowledge about the new therapies and studies on the
subject? Are there forums or specific web sites? Where are the more
developed centres of therapy in the world?
I hope that your choices were good and that you may be an example of hope
and strength for all of us.
I thank you very much for your help.
Competing interests: No competing interests