Last week I discussed ^[1] the advantages and disadvantages of a growing number of multiple myeloma therapy options.

How could there be any disadvantages to more options?  I mentioned how even oncologists and hematologists that specialize in treating multiple myeloma will only be guessing when deciding which drugs to use, when, and at what dose.

Then I suggested how with choice comes responsibility.  Responsibility for the patient and caregiver to learn as much as they can about therapy options to understand when to start or switch to another therapy option and to understand individualized dosing and what works best for you or your loved one.

That’s a lot of responsibility — and a lot of homework!  So let me give you a few examples of why this is all so important, using real world cases.

A patient’s caregiver recently shared with me that her husband was taking 25 mg of Revlimid ^[2] (lenalidomide) daily.  “Oh, you must mean 21 days each month,” I responded.  “No,” she said.  “He takes his Revlimid capsule every day.”

Now, I’m not a physician—although I do pretend to be one on occasion.  But I have never heard of taking Revlimid daily at any dose.  The standard of care calls for a minimum of seven days rest each treatment cycle.

My suggestion:  “Ask your doctor why your husband is taking Revlimid every day, with no days off.”

After all, the physician may have a perfectly good reason.  But I do know that her husband’s physician is a medical oncologist, not a myeloma specialist, so there are two likely reasons for this unusual dosing.

The most likely is that his doctor wanted to hit this patient’s myeloma HARD at first in order to get things under control.  She then probably forgot to cut the dosing schedule back after a cycle or two.

The second, less flattering explanation is that his doctor simply isn’t aware of the recommended dosing schedule when using Revlimid.  This can happen more easily than you think.

How?  Medical oncologists treat patients with dozens of different types of cancer.  It is difficult to keep up with all of the medical advances in treatment—especially in the ever changing world of multiple myeloma therapy.

Remember, multiple myeloma isn’t a common cancer.  It’s possible this doctor only has one or two myeloma patients in her care at any given time.

It is common for oncologists to use the highest possible dose of a chemotherapy drug at the start of therapy.  Then, depending on how many side effects a patient reports, dosing can be adjusted accordingly.

OK.  So who is ultimately responsible for deciding when—and how much—a dose should be adjusted?  It just might be you, the patient!

If you don’t share how you feel openly and honestly with your oncologist, he or she may assume everything is fine and won’t adjust the dose.

But often, multiple myeloma responds well to a much lower dose than the maximum dose.  By not helping your doctor make adjustments along the way, you could well be exposing your body to much more toxic medication than is called for.

Or should I say “doses.”  Because most often, anti-myeloma drugs are used in combination.

Still not convinced why you need to take responsibility for your own myeloma therapy?  Here is another  example of why knowledge is power—and can make a real difference in your quality of life.

Last month I spoke to a patient whose myeloma had been under control for almost two years.

“Are you taking any maintenance chemo?”  I asked.  “Yes,” he replied, “I’m taking Revlimid and dexamethasone ^[3] (Decadron).”  He continued:  “And man, that ‘dex’ sure causes problems!   I can’t sleep very well, and I think my wife is about to leave me sometimes after I snap at her for no reason…”

“Have you asked your doctor if you can drop the dex?”  I asked.  “You can do that?” he replied, looking astonished and hopeful.  “You bet!”  I said.  “I dropped dex after one year of maintenance.“

In this case, the patient was only taking 10 mg of Revlimid, 21 days a month.  But he was still taking 40 mg of dex each of the first three weeks.  Once a patient obtains a complete response or very good partial response and their myeloma is stable, more and more doctors are starting to cut the dose of dex in half to 20 mg or eliminate it altogether.

This is an example of a quality of life issue, with very little medical risk.

The same rule of thumb applies to Velcade ^[4] (bortezomib).  The dose can be adjusted down.  Or since an IV or injection is required, more often the frequency of dosing will be cut down from twice a week to once a week.

And don’t forget about the dex!  It is often used with Velcade, too.  And the same advice applies, just like with Revlimid:  Once your myeloma is under control, you and your oncologist should discuss the pros and cons of either reducing the dose or eliminating it from your treatment schedule altogether.

So pay attention to when, how much, and why you receive each of your medications.  It just may help you live a more normal life.

Feel good and keep smiling!  Pat