velcade - cycle six

Let's see. Here I am halfway through the four weekly treatments in cycle six. Today I traveled to St. Paul's, as usual, for two bortezomib (Velcade) injections after taking my weekly dose of dexamethasone with breakfast. It is now part of my regular routine. Blood work on Wednesday. Injections on Thursday. Today I also received the report of the level of the protein free light chains that is measured at the end of each thirty-five day cycle. This is the test to see how well the treatments are controlling the myeloma and amyloidosis. Once again it is good news. At the end of five cycles the number is 96. That is the same as at the end of cycle four. Since the goal is to keep the number below 100 I am grateful for the report. That is the main news regarding my treatment. Along with it, there are a couple of other things to update.

I am nearing the end of my first month of regular exercise under the direction of my trainer at Back on Track Fitness. We came up with a program that I can do at home and, for the most part, it seems to be going well. I can feel myself slowly gaining strength and endurance. It feels good to be returning to the rhythm of regular exercise. No running yet. We are still working on strengthening my core, stretching tight muscles and building cardio on the stationary bike. I hit a few days this week when my busy schedule, early mornings and fatigue in the evenings meant that I did not keep up with the exercises as intended. However, I have been through these kind of lags in the past and have learned not to fret too much about them. This morning I got back on the bike and then worked on stretching. Later, or tomorrow, I'll do some resistance work. Then next week I will check in at Back on Track and get a revised program for month two. In the long run I am imagining being back out on long runs. For now it is one day at a time.

Last week I had a good phone conversation with my hematologist. I appreciate being able to check in with him in this way between appointments. At this point my appointments come only when there is a change in my condition and/or a need to change treatments. In the meantime, I am able to communicate with him via email and telephone. One thing that I learned in speaking with him is that I will not automatically receive another round of treatments with Velcade when the initial eight cycles are completed. When he applied for me to receive Velcade the funding for this expensive drug was capped at eight cycles. That means that my last treatment is scheduled for January 31/13. After that I will go without treatment and I will have monthly blood tests to determine the activity level of the myeloma and amyloidosis. If/when that level begins to increase he will then suggest the next course of treatment. Given the experience we have already had with these diseases we are both expecting that there will not likely be a period of remission but that the levels will increase shortly after stopping treatment with Velcade. It sounds like there are a couple of options to try at that point.

One would be trying a smaller dose of Revlimid (lenalidomide) than I was on earlier this year. At that time I had a positive response in terms of the drug's capacity to control myeloma and amyloidosis. Unfortunately, at the same time I had the allergic reaction that resulted in hospitalization. The doctor is considering trying a smaller dose to see if my body might not have the same allergic response. It would also mean four months back on high doses of steroids (dexamethasone). Needless to say, I am a bit hesitant about this but am willing to try it if he thinks it is the best next step. Revlimid is certainly something of a wonder drug for many people with myeloma. The second option is for my doctor to apply for funding so that I might receive another eight cycles of Velcade. I do not know how likely it is that this may be approved but, given that it is the one treatment that has proven successful so far, I am hopeful that I will be able to continue on Velcade in the future. 

Beyond these options there are other possible treatments. There are two new drugs (pomalidomide and carfilzomib) that are on the horizon, though not likely available in Canada for another year or so. There are other promising drugs undergoing trials. At some point, sooner or later, I expect to be included in one or more of these trials. To be honest, I would prefer simply being able to stay on the treatments with Velcade and dexamethasone for as long as they work. It is disappointing to hear that, due to the expense, I will need to stop a treatment that is working. However, I understand that this kind of health care is expensive and that there are limited resources to be shared as equitably as possible among many people suffering many illnesses. We will deal with future treatment plans when we get there. In the meantime, I am grateful for these days with no symptoms of my disease and relatively minor side effects from my treatments. I am also very grateful for the care and prayers of so many, near and far.


  1. Jim, Janice and JamesonNovember 9, 2012 at 9:03 PM

    We are all hoping that there can be another application for more Velcade treatments. It doesn't seem right that a treatment that is working must be stopped.

  2. Oh, how complicated. God bless your health and your medical team as you travel the maze of decisions.

  3. Hi Ed,
    If you are unable to get the next 8 cycles of Velcade how much money would it cost to pay for it and could we have a fundraiser or donations to help you get it?

    1. Hi Barbara,
      How lovely of you to think of such a thing. Others have also asked. I can tell you at presbytery how much Velcade costs per week. It is a lot. At this point I think it makes sense to see what happens next as it may well be that I will eventually be approved for a continuation on Velcade if it proves to be the only known treatment that is effective at this time. In the meantime, thanks so much for your care and concern and thoughtfulness.