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February 2011 Archives : Thoughts from the "Good Patient"

Michael-Alps.jpgSo, you or your loved one or your friend has been diagnosed with myeloma.   You've never heard of it before.  You learn that it is a cancer of the bone marrow, of the blood.  You learn that it is incurable, that it's fatal.  You think, "Holy *&^$!, Why me?  Game Over!"  

You're upset.  You're frightened.   You're right to be upset and frightened.  It's OK to be angry.  It's normal to be angry.  panic-button.jpgBut, like anything else in life, moderation is the key, lest you become the Charlie Sheen of the patient and caregiver set.  Once you've had a good cry and a good yell, not necessarily in that order, it's time to figure out how you're going to fight the most important battle of your life, the battle for your life. 

OK, are you back yet?  Has your heart rate fallen below 180?  Have you plastered over the hole you punched in the wall with your head?  Good!  Now, sit down, take a deep breath, and join me as we take stock of the situation.  

First, whatever you may have read, life is not over.  At the risk of sounding a bit like "Pollyanna", Myeloma is no longer the "adios express."  Many patients live many many good years with myeloma.  For one, I was diagnosed over 20 years ago (in 1990), and am still alive and kicking (the picture above was taken last summer atop one of the Itailian alps overlooking Lake Garda.  I celebrate each year of victory over myeloma by attending the summer opera festival in Verona, Italy.  Lake Garda is just north of Verona.)  Life with myeloma can be incredible, with careful attention to monitoring and treatment, a good attitude and A Little Bit Of Luck.

You've just gotten through one of the most dangerous periods in the course of a patient's experience with myeloma:  the period that the disease is left to run willy-nilly because no one had any idea that it was there.  Think of all those planes flying towards Pearl Harbor with the entire island blissfully ignorant, suddenly stunned to hear the droning engines followed by the hail of bombs, bullets and explosions.  Nowhere to hide.  No way to stop the carnage.  Well, that was then.  This is now.  

Today, doctors are much more aware of myeloma and will often diagnose patients early,  before they have any obvious symptoms of the disease.   Those who aren't so lucky to have been diagnosed early can have all sorts of issues, including infections, anemia, bone or kidney damage, to name a few.  But, once diagnosed, there are so many effective treatments to quickly gain control of the situation-- stopping the progress of the disease and relieving the symptoms.  Learn the basics about myeloma by reading the IMF Patient Handbook.  Watch the "What Is Myeloma?" video on the IMF website.

There are emergency measures to get control of life-threatening and the more immediate threats.  These may include bisphosphonates for high calcium levels and bone issues, infections, hydration, radiation or surgery for bone issues.  Most patients won't need these but for those that do, they can make all the difference.  Pain management may be needed until symptoms are brought under control.  There is no honor in needless suffering -- take the shot, swallow the pills.

Once any immediate crises are resolved, there are many options for treatment for those that need it.  In fact, there are so many good options that it can be very confusing, as there is not one right answer.  But, having too many options is the second worst problem (years ago, there were too few options, and they weren't very good options.)

It is important to remember that many patients who are diagnosed will go for many months or even years before they need any treatment.  Scientists and clinicians agree that treatment is not needed until patients have specific types of symptoms that affect the blood, bones, or kidneys.  When it's time for treatment, there are incredible options, many of which did not exist just a few short years ago.  And, there are many new treatments being developed that should be available soon.  For a list of the current treatments and a look at the ones under development, check out the International Myeloma Foundation's Myeloma Matrix.

In my next blog entry, I will try and go over some of the most common upfront treatment options (from a patient standpoint) and some of the things to think about when considering options for up-front (first) treatment.  

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