[Gijones108]

Anyone with similiar diagnosis

by Gijones108 on Thu Apr 12, 2012 1:58 am

Hi my Name is Greg Jones and my dad Ian has had multiple myeloma and plasmacytoma since 2008. They first dianosed him with a Plasma on the back wall of his lung. His protein rose from 7 to 42 pretty fast.In May of 2009 they diagnosed him with multiple myeloma and tried to collect stem cells however this failed and he had Thalidomide and Dexamethasone and Neuropathy began in his feet. He plateaued for a while until april 2010 and one large dose of chemo was used to kick start stem cells again but this failed again and he developed shingles and pnuemonia and protein roses again from 5 to 14.
Another plasma was found in sept 2010 in the nasal pharynx area and radiation was used and he lost a large amount of weight and a PEG was inserted into his stomach to maintain wieght. in nov 2010 he started on Revlimid. In march 2011 more plasmas were found in spleen and the wall of stomach and chemotherapy was started again in may 2011using Dexamethasone + Cyclophosphamide + Etoposide + Cisplastin and protein went down from 32 to 2 which was great.
Therefore in sept 2011 they tried stem cell collection again using Mozibal but this failed and we were very dissapointted and a bit lighter in the pocket. Two months later in Nov 2 more plasmas were found on his leg and one on his face and protein went up to 22.
In dec 2011 he started on Velcade + dexamethasone + cyclophosphamide with two weeks on one week off cycle. Neuropathy worsened up to kness and now hands were also feeling it and he started getting dizziness, diarrheoa, constipation, stomach cramps, very cold always and no energy.
As of the start of the month Apr 2012 he has restarted Velcade due to another plasm found on his throat which has been surgically removed as of last friday.

This is a brief summary of what my dad has been through lately and my dad and i/we as a family seem to be getting nowhere. I am also after some feedback from anyone that can get rid of any thoughts that he is the only one in the world with this combination of diseases as he in constantly told he is a 'difficult case' or 'tricky patient'. He needs to know hes not alone with this.

I have joined this forum basically to try and find someone out there who may have or be going through a similiar ordeal and can share some ideas or methods that may have helped as a result in sharing their story or speaking to people.

Thanks for your time