I understand that it’s not unusual for any family that is touched by cancer to face a number of difficult decisions.  But from my work with other types of cancer, and my experience acting as my wife Pattie’s caregiver when she had cancer, I have learned that those of us battling multiple myeloma are forced to make a lot more decisions than most.

Sure, second opinions are common after any cancer diagnosis.  But many other cancers can either be cured or forced into long-term remission.

Multiple myeloma is different, though.  Myeloma relapses faster than most cancers.  So, myeloma patients, caregivers, and their families are forced to make bunches of difficult decisions, interspersed with relatively short and anxious waiting periods.

The responsibility and gravity of these decisions can be staggering.

Some of you may be “lucky” enough to be diagnosed with monoclonal gammopathy of undetermined significance (MGUS) or smoldering myeloma before any treatment is necessary, or you may be enjoying time off during a complete response or otherwise stable disease.

Most long-lived survivors treasure this quiet downtime.  I like to call it the “calm before the storm.”  Even though you aren't currently undergoing treatment and may have periods in which you can almost forget about myeloma, there is always the nagging wonder about when you will progress or relapse and need to make all of the dreaded treatment-related decisions.

But what about everyone else?

Do you remember how stressful it was back when you or your loved one was newly diagnosed?  When you barely knew how to say or spell “myeloma,” yet needed to decide where to go for treatment?  Or when you had to decide whether to transplant or not, and whether to use maintenance or wait?  And of course, there’s always the question of how am I going to pay for all of this?

Over the last 12 months, I learned that my autologous stem cell transplant hadn’t worked and I would need intense consolidation therapy to help get my myeloma back under control.

What should the therapy be?  Should I transplant again?  If not, how often would I need chemo, and what would the doses be?  Would it work?  If it works, what then?  When should I start a maintenance therapy regimen, and what would that be?

I started thinking about all of these decisions myeloma patients need to make – and how difficult and unfair it is – while I was part of a discussion last week that involved a number of patients and two myeloma specialists.

One patient asked how her father should be treated now that his transplant from nine months ago wasn’t working anymore.

She briefly described the therapy her father had been on before and after the transplant.  The two physicians each made a thoughtful suggestion.  They were completely different, of course.  But what struck me is what the second physician said as he rattled off three or four different suggestions. “It’s up to the patient to decide which therapy to choose,” he said.

Really?  Up to the patient?  I thought it was the doctor’s job to decide which treatment is best for the patient!

I can’t think of another type of cancer where so many decisions need to be made so often, many of them by the patient and family, not the physician.

To be fair, this isn’t the myeloma specialist's fault.  Experts are still a decade or more away from being able to look at a patient’s genetic profile and know up front which therapy or therapies should work best.  So without reassuring data to help point your doctor in the right direction, many of these decisions fall back on the patient and their family.

How old is the patient?  Do they have other diseases or complications that exclude one type of therapy or make another potentially too hard on the patient.  These are questions a doctor can deal with.  But what about quality of life issues?  And can they afford it?  How far away from the clinic does the patient live?  Is he or she able to stop in for regular treatment?

Even though physicians don't know answers to all of the questions yet, the ultimate question and decision a myeloma patient and caregiver need to make is still:  Is your current hematologist/oncologist qualified to help you make these decisions?  Does your doctor understand the ways existing drugs can be used in combination?

Kyprolis ^[1] (carfilzomib) was just approved by the U.S. Food and Drug Administration six months ago.   Pomalyst ^[2] (pomalidomide) should be approved any day now.  Does your doctor understand how and when these new drugs should be used?

Whew!  I’m exhausted – and this exercise isn’t even real!  But the hard part is that this is real for most of us.

Needing to make so many difficult decisions, so often, means putting together a competent and well-informed heath care team ^[3] is vital.  We all need all the help we can get as we face decision after decision after decision …

Feel good and keep smiling!