on to pomalidomide

Last week I was in to see my hematologist for my fall appointment. I have been enjoying being free of chemotherapy and steroids since concluding treatment with Velcade in mid-February. During that time my free light chain count has remained quite stable. In the past month the free light chains have begun to rise once again. My doctor advised applying for the compassionate access program provided by Celgene for the recently approved (in Canada) chemotherapeutic drug pomalidomide (trade name Pomalyst). While it is approved for use in Canada it is not yet funded by our health insurance. As I have received the other available treatments (autologous stem cell transplant, lenalidomide and velcade) I am eligible to receive pomalidomide through the passionate access program of its manufacturer. The application was submitted this past Friday and approved yesterday.

Pomalidomide comes in a pill form and is taken twenty-one days a month. This means no weekly trips to the hospital for injections as was the case with Velcade. As pomalidomide is related to lenalidomide, the drug I had an allergic reaction to in March 2012, we will begin with a smaller dose in hopes that my body will tolerate it well. There is a chance, of course, that I may have a similar reaction. We will watch for any sign of fevers and stop the treatment if those occur. Along with pomalidomide I will be taking the steroid dexamethasone once a week, the same dose I received during my treatments with Velcade over the past two years. It is not my favorite, but it is a manageable dose.

These past nine months have been a wonderful reprieve from treatments. The first such break since my diagnosis in April 2011. Being free of dexamethasone has enabled me to lose some weight and feel myself again. I was not surprised to find that it was time to begin treatment again. I knew that my free light chains would begin to rise sooner or later. Given that we are not only trying to keep the myeloma at bay but are also concerned to prevent the amyloidosis from causing organ damage I realize that I am fortunate to be able to receive treatment that promises to keep me healthy for as long as possible. Still, it took a week or so to get accustomed again to the thought of the weekly steroid roller coaster ride as well as to the uncertainty surrounding my body's reaction to pomalidomide. No matter how much I get accustomed to the new normal of life with myeloma it still comes as something of a rude awakening when it comes time to try a new treatment. It is that time again.


  1. My prayers are with you. My daughter suffers with a rare, complicated and incurable disease and we know so well the roller coaster of treatments, hopes and waiting for approval on new drugs.

    1. Thanks Barbara. Our prayers are with you and your daughter as well.