after velcade, a breather

After forty weeks and eight cycles on Velcade and dexamethasone today marks the beginning of my break without treatment. Normally I would have been at St. Paul's hospital this morning for the first of my four weekly injections. It also means that I am not taking any steroids for the next eight weeks. Even though I only take a dose of dexamethasone once a week I still find that this is a challenge (much less than four times a week as when preparing for the stem cell transplant, but a challenge nonetheless). I am looking forward to living without the ups and downs that are the side effects of dex. I will be living normally, without treatments, at least until April 8 when I next see my hematologist. Between now and then I am planning on eating well, getting exercise and just generally enjoying life.

We continue to monitor my kappa light chain myeloma and amyloidosis by tracking the free light chains in my blood. I received the latest result today. This will be the benchmark that we will use to measure my response in the absence of treatment. Today's result shows the count at forty-five, up just two from last month at forty-three. This is continuing good news. The Velcade has lowered the number significantly over the past ten months and has kept it stable. This good response may mean there is a period in which the number stays low. We'll see. In any case, when the free light chains begin to rise again my doctor will propose the next treatment plan and we'll go from there.

In the meantime, there has been good news in the myeloma world with the announcement that another drug - pomalidomide - has been approved for treatment by the U.S. Food & Drug Administration (the second - along with carfilzomib - in less than a year). This means that it will most likely be available in Canada at some point in the not too distant future. Here is the announcement as shared through Myeloma Canada's network: Pomalyst. There is more about this news at Myeloma Beacon. The second report notes that no more new drugs are likely to be approved until 2015 ... but more are on the way. I am fortunate to be living with myeloma and amyloidosis in an era when real progress in treatment is being made.

On the home front, our youngest daughter is busy organizing a fund-raising event for myeloma research. The funds will be going to clinical trials in hematology at Vancouver General Hospital. These are the trials that I will likely participate in at some point in the future (when the approved drugs have run their course) so it feels great to participate in supporting the researchers and patients who are involved in them now.


  1. Wishing you good health and good luck...enjoy the freedom....
    Dana (from Israel)

  2. Dana - it was so great to see you this week. Thank-you for the good visit and for your continuing good wishes! I wish you the same as you travel home.

  3. Hi Ed,

    Hope the count stays low and you enjoy some Kairos time.

    Love from john and team in England