day one, again

Today is day one of my first thirty-five day cycle on the chemotherapeutic drug called bortezomib (marketed as Velcade). It feels like my fourth "day one" since my diagnosis a year ago. There was the first day taking mega-doses of the steroid dexamethasone which began in late May last year. Then there was the mega-dose of the chemo drug melphalon which was day one of the autologous stem cell transplant in September. And then there was the first day taking the chemotherapeutic drug lenalidomide (Revlimid) this past March. Each first day is a mixture of anxiety and hope, curiosity and uncertainty. Having read all of the possible side-effects I wonder which, if any, will effect me. Knowing that the treatments have a good chance of being successful but also knowing that not every response is positive leaves me wondering what the results will be.

So far I have learned that my version of multiple myeloma and amyloidosis responds well to dexamethasone. I also know that the side effects caused by this steroid are significant. The down-side is a very different quality of life. I have also learned that the hoped for good remissions from the stem cell transplant and from lenalidomide did not materialize. So I am cautious when it comes to the hoped for remission from bortezomib. I have an open mind and so will be glad if it stabilizes my free light chain count at a low level for a good while (perhaps a year or even two). But I will not be surprised if my version of multiple myeloma and amyloidosis proves resistant to this treatment. We'll see. Bortezomib is now given as a subcutaneous injection ("a shot"). My recommended dose is once weekly for four weeks and then one week off, totaling thirty-five days in each cycle. I take a dose of 40 mg of my old friend dexamethasone when I wake up on the morning of my bortezomib injection. Taking dexamethsone once a week for four weeks out of five sounds a lot more palatable to me than my previous regimen of taking it for twelve days out of every twenty-eight (in three four day segments, with two four day intervals and then a one week break in between). I am expecting that the side effects of the dexamethasone will be much less problematic with this dosage.

This morning I headed in for my first weekly appointment in the medical short-stay unit on the eighth floor of St. Paul's Hospital. It was also the day for my monthly infusion of pamidronate (a bone building drug to prevent the weakening of my bones that is caused by multiple myeloma). I have been to this unit monthly for a year (except when undergoing the stem cell transplant) and know it well. The nursing staff is friendly and efficient. The patients are mainly being treated for blood disorders. There are five rooms, most with four beds, and they are north facing with windows overlooking Vancouver's west-end with the mountains in the background. I have a good view. There are some perks to living with cancer after all.

The pamidronate is given intravenously and takes about an hour and a half in total. I read a book and enjoy the view. The bortezomib injection, on the other hand, takes about two minutes. Today there was a long wait as the pharmacy, the doctor and the short-stay unit faxed back and forth to make sure that they had the dosage, etc right. It was a bit frustrating to wait and there were numerous apologies but I was glad for their concern for accuracy. Finally two small hypodermic needles arrived. Each took about fifteen seconds to inject into my belly. It stung while the chemicals were being injected but did not hurt after that. Given what one expects when you think of chemotherapy it was all somewhat anti-climactic. I can expect some bruising for a couple of days at the injection site. Other than that there are a host of possible side effects but most people suffer few if any of them. Interestingly, the one thing I have been warned numerous times to avoid (including by the nurse today) is green tea. Green tea? Apparently it neutralizes the positive effect of bortezomib. So no green tea for me. Got it. There is an increased risk of getting shingles while on this drug and so I am taking an anti-viral pill daily to try to prevent this from occurring. The most problematic side effects that we will be watching out for are lowered platelet levels (I will have a weekly blood test every Wednesday to keep an eye on this) and neuropathy (numbness and tingling) in my hands and feet. Either of these, depending on their severity, would result in lowered doses or stopping the treatment.

The really good news is that there is every expectation that I will be able to continue to live a relatively normal life while on this chemotherapy. When people hear that I am on chemotherapy they regularly assume that I will have nausea and vomiting, that my hair will fall out and that I will not be able to work. In this regard many of us are a decade or two behind modern cancer treatment for many cancer patients. Chemotherapy simply means using chemicals to treat cancer (as opposed to using surgery or radiation). In the old days of twenty years ago that often meant the kind of chemotherapy that kills the good cells along with the cancerous cells. Chemotherapy in our day is increasingly targeted to specific cancer cells, leaving healthy cells alone. I am the beneficiary of just this kind of chemotherapeutic drug. Bortezomib, for example, is prescribed for just two cancers: multiple myeloma and mantle cell lymphoma. This is how advanced chemotherapy is becoming. I am grateful to be on the receiving end of such specialized treatment. Now let's hope it works. My next blood test to measure my free light chain count will come on day thirty-five of this treatment cycle (as it will in each cycle). That will be our first chance to see how this treatment is working. In the meantime, three more Thursday morning trips to St. Paul's Hospital to go in my first cycle on Velcade. May there be many more!

Thanks, as always, for checking in and for your care, concern, prayers and support.


  1. Thank you, Ed, for this thorough and helpful update. May this be the "cocktail" that does the trick...and for a good long time. Bless you!

  2. Thanks for the update, Ed. I think about the time you will be having that first 35 day blood test to check on the effectiveness of this latest treatment, I will be getting on my bike to do the Ride to Conquer Cancer. Once the latest mailed in donation is processed I will have reached the $2500 I am required to raise. Seems like a drop in the bucket but then so does prayer sometimes and I know first hand the power of it. Blessings upon you, friend.