I have written about the challenges and frustrations of “watchful waiting ^[1]” here in the past.

I believe this is one of the most challenging aspects of living with multiple myeloma—sometimes all we can do is watch and wait for our myeloma to return.

But something exciting happened to me today, which has changed my whole attitude about this.  I would like to share the details with you now.

During a follow-up appointment with my myeloma specialist, Dr. Melissa Alsina from Moffitt Cancer Center in Tampa, Florida, Dr. Alsina became concerned about what might be my early stages of Velcade ^[2] (bortezomib)-induced peripheral neuropathy (PN).

My PN causes tingling in my hands and feet—like they are asleep—sometimes it’s worse than other times.  Fortunately, my PN is not painful, although it is for many others.  It’s pain and worsening of other symptoms that Dr. Alsina wants to avoid.

Normally when PN begins, oncologists simply cut back the number of Velcade treatments from two per week to one.

However, in my case, Dr. Alsina was hesitant to do that, since my monoclonal protein numbers—or M-spike—had not been dropping as quickly as she anticipated.  Since I am scheduled to undergo a stem cell transplant at Moffitt in June, it was hoped the induction therapy combination of Revlimid ^[3] (lenalidomide), Velcade, and dexamethasone ^[4] (Decadron), which I had never tried before, would drop my numbers significantly in a matter of weeks.

So we faced a dilemma:  Reduce my weekly treatment from two doses to one in hope my PN wouldn’t progress—or risk a painful increase in my PN by remaining aggressive and sticking with the double weekly dose.

Dr. Alsina’s solution was to recommend I switch to a brand new way of administering Velcade, subcutaneously (or subQ), instead of by IV push.

Dr. Alsina reaffirmed the results of studies I had read, which showed that subQ Velcade was less likely to cause serious PN than Velcade administered by IV.

“I didn’t even know subQ Velcade was available yet,” I remarked, surprised.

She replied, “We have been using it here for several weeks.”

Let me explain.  The formula of the Velcade itself is the same, but it is reconstituted differently for subcutaneous injection vs. intravenous.

Millennium Pharmaceuticals—the makers of Velcade—filed for approval of this new method of administration for Velcade with the Food and Drug Administration (FDA) in late March.  However, doctors are already using the product “off label,” meaning before the FDA has approved this administration method.

I suspected subQ Velcade wouldn’t be available at my smaller, local clinic, the Florida Cancer Institute.  This was confirmed when I met with my medical oncologist, Dr. Malhotra, there on Tuesday.

“I believe we can get it.”  Dr. Malhotra said.  “But I have never used it before—it is too new.  Dr. Alsina is a specialist.  She is more cutting edge than we can be here.  If she says it is a good idea, I will review the literature and speak with her about it.”

Sure enough, when I arrived for the first of my two weekly treatments the next day, Dr. Malhotra had issued the order and I received the first subQ Velcade shot given by Florida Cancer Institute.

Can you say guinea pig?

So what?  Why is this such a big deal to me?

Sure, it means I will need to undergo fewer IVs, and that should save some time and discomfort.  But that’s not it.  There’s more.

Two years ago, I attended a briefing on experimental drugs Millennium had in the pipeline.  SubQ Velcade was one of the listed “drugs of the future.”

But for me, the future is now!  Since I have never been part of a clinical trial, this is the first time I have experienced an experimental multiple myeloma drug becoming a reality.  Here I am—a short two years later—using Velcade in a new and safer way.

I never dreamed something like this could happen so quickly!  To use a drug that only a short two years ago was in clinical trials leaves me feeling uplifted and hopeful.

Hopeful.  Maybe we should change the phrase from “watchful waiting” to “hopeful waiting!”  Velcade subQ is proof that new, experimental drugs are on the way—hopefully in time to help you and me live longer and better.

Feel good and keep smiling!  Pat