I was in to see my hematologist this week. My last appointment was in early March. I have been off of targeted chemotherapy (bortezomib) and steroids (dexamethasone) since mid-February. In the meantime, my free light chain count has risen slowly (up from 100 in mid-February to 178 currently). The doctor does not think that this warrants beginning the next treatment at this time. Yay! He is thinking that when the count is closer to 300 we will start with pomalidomide and dexamethasone.
Though pomalidomide is a newly approved drug in Canada that is not yet funded in British Columbia the manufacturer Celgene is offering a compassionate access (ie: free) program for people such as me. Admission to the program ends on December 31, 2014. It is not known when our provincial medical services plan will approve funding of pomalidomide (though given its proven efficacy this is assumed to be a when not an if). Given the rate at which my free light chains are rising I expect to begin treatments in the Fall.
When we do begin with pomalidomide we will start at a half-dose while we watch for any allergic reaction on my part (given the fevers and lung inflammation that came in reaction to lenalidomide). We will complement this with a full dose of dexamethasone for the first couple of months. This assists in the prevention of allergic responses from the immune system (the steroids help to calm the immune system down). I am not looking forward to being back on dexamethsone but understand why it is necessary. In the meantime, I am grateful to be feeling normal and to be able to enjoy the summer free of powerful drugs.
It was recently reported that Gino Odjick, a well known retired hockey player from the Vancouver Canucks, is seriously ill at age forty-three with amyloidosis. This is the rare blood disease that I have in conjunction with multiple myeloma. I am saddened to hear that Gino's illness is so advanced. It is all somewhat sobering. It is also all the more reason to receive the gift of these healthy days. Speaking of gifts, last week we celebrated the birth of our seventh grandchild (and third grandson). Being with our little ones puts everything in perspective!