Last month I promised to share details of my new myeloma treatment plan. As I write this, I’m waiting to meet with a leading myeloma specialist at the University of Iowa for a second opinion.

I spent several days here undergoing extensive testing, including a bone marrow biopsy, PET scan, and MRI that looked at two thirds of my body and took an ex­cruciatingly long 80 minutes; that’s a long time to hold still!

I’m anxious to go over the genetic data that was collected from my biopsy, along with any insights the specialist might have now that he has seen my updated scans and blood work. Then I’m going to hand deliver the films to my hometown specialist at Mayo Clinic, Jacksonville, so I can get his input.

I’m very sorry, but it’s going to be another month before I can let you know the decisions we’ve made and why.

In the meantime, I wanted to remind you that March has been designated Multiple Myeloma Awareness Month. Most everyone involved has embraced the designation: non-profits, drug companies, and support groups.

I was never a big fan of this campaign, but I’ve come around in recent years. My only criticism is that it will take more than a month every year to get our story out and understood. I’m sure the national attention the new HBO special, "Killing Cancer," has received will help; the first 10 minutes feature the Mayo Clinic’s promising new measles viral therapy. That’s well-deserved and priceless attention.

Yes, it’s important to try and educate the public about our bone marrow cancer. It’s even more important to help doctors and nurses who don’t specialize in oncology understand and watch for symptoms that could help them make an early and accurate diagnosis.

But there’s another group of people that we need to reach: myeloma patients, caregivers, and their families. I can’t think of another cancer where it’s as important – no, imperative – for a patient to be well versed about their disease and treatment options.

Farydak ^[1] (panobinostat) was just approved by the U.S. Food and Drug Administration (FDA) last week. Com­bine FDA-approved myeloma therapies – and therapy combinations – with crossover drugs used to help treat other cancers, and your doctor is faced with dozens of possible treatment options.

And don’t forget about transplants. Should your doctor perform an autologous stem cell transplant right away or wait? How about a tandem auto? Or for younger, high-risk patients, maybe an allogeneic (donor) trans­plant might be the way to go.

But it isn’t that easy. What type of allo should your doctor try? Full-blown or mini allo? Or one using cord bood? Inpatient or outpatient?

Or what about trying one of the hundreds of clinical trials available at any given time?

Knowing the basics about the disease and treatment op­tions, and some of the commonly used terms, can really help a patient and caregiver communicate clearly with their doctor, who is hopefully a myeloma spe­cial­ist.

In the “old days,” doctors sometimes seemed to be talking down to their patients. Fortunately, that attitude is changing. I have found that understanding the basics about how myeloma therapies work – and which op­tions might work best at any given time – helps me get more information from my doctors. They speak with me more candidly and in more detail. This can be a real advantage for all involved.

Working as a team is the way to go. You know the old saying, “Two heads are better than one.” Three or four heads are even better, as long as there’s a coach (you) running the show so things don’t get too garbled.

Clear communication is important for another reason: it’s up to patients to help educate their doctors and nurses about side effects they experience that directly impact their quality of life. Which drug is causing a harmful side effect isn’t always an easy thing to sort out in a world of combination therapies. Sometimes, something as simple as dosing in a different way – or at a different time – can make a big difference. As patients, it’s up to us to let our doctors know when something isn’t working well for us – or when it is.

So spread the word! During March (and every other month), continue to educate yourself about myeloma and myeloma therapies. Focus on putting together a top-notch medical team, facilitating communication between team members about side effects and how well things are working for you.

It’s a lot of work, but no one ever said living with cancer would be easy! The key word here is “living.” Let’s all work together to keep it that way.

Feel good and keep smiling!