Pat Killingsworth Pat Killingsworth

My cramps don’t know it’s Christmas: A Christmas wish for you

My sour stomach and cramps don’t know it’s Christmas.  I’m up early again with  dexamethasone induced stomach issues and cramps in my lower legs and hands.

It isn’t as bad as it was yesterday morning.  Despite drinking nearly a liter of quinine filled tonic water, yesterday’s cramping was the worst that I have ever experienced!

But this post isn’t about that.  It isn’t about me.

I’m not sure why, but I decided to look back at past December posts this morning.

Like this year, discussion centered around my trips to ASH–New Orleans in 2009 and Orlando in 2010.

I would like to share one of my favorites with you from last year.  I will add a few updated hopes and dreams at the end…

All I Want For Christmas: A Message To Bill Gates & Warren Buffet

Posted on December 24 2010

I recently saw a news story about how Bill Gates and Warren Buffet are crisscrossing the globe, meeting with fellow billionaires in an attempt to get them to commit part of their fortunes to help solve the world’s problems.

Wonderful! I have a suggestion—and it wouldn’t take billions: Finance independent research studies about the effectiveness of natural supplements in preventing or slowing cancer.

A specific example of this applies directly to multiple myeloma patients. As many of you know, curcumin, a natural occurring compound made from the spice, turmeric, has been long touted as a beneficial supplement—and possibly even a cure—for multiple myeloma.

Trouble is, most research studies are funded by drug companies. Since there isn’t any money in it for the large pharmaceuticals, most helpful curcumin studies—like many other natural alternatives to more expensive drugs—are never completed due to lack of funding.

What about anti-oxidants? Most of us have read about how great they are for us. Do they really help prevent cancer? Can using them help slow our multiple myeloma down after we are diagnosed?

Once we have some verifiable results about our nutritional options, wouldn’t it be helpful to have more information about how these supplements interact with our chemotherapy?

I understand why many oncologists hesitate to recommend nutritional supplements while a patient is undergoing chemotherapy—there isn’t any research confirming or debunking the theory that some supplements reduce the effectiveness of chemo. Everyone is just guessing.

Asking a patient to stay off supplements during chemotherapy may make sense while treating some other cancers. Although not ideal, not using nutritional supplements during a three to six month treatment window is understandable. Better safe than sorry.

But multiple myeloma isn’t like a lot of other cancers. Our treatments can be ongoing and often continue for many months or years. To deny our bodies vital nutrients when we need them most is not acceptable! Researchers need to help determine which interactions are harmful, and which might actually enhance the effectiveness of our treatment.

Maybe the FDA should require this type of data before they approve a new cancer drug.

Or maybe Bill and Warren could step-in and fund more of these studies, so doctors and their patients aren’t just guessing about which supplements work best and at which dose. Wouldn’t that be helpful?

Let me make a call. Does anyone have Bill or Warren’s phone number handy?

Feel good and keep smiling! Pat

It’s hard to top that!  But why stop there?  Asking for a “cure” is too easy (worth a try, though!)  Instead, let’s add a few important, yet achievable things to the list…

More time and money should be spent studying individual and optimal dosing.  Aren’t we all tired of being Guinea pigs–even when we aren’t part of a clinical trial?

For example, are clinicians really sure that 40 mg of dexamethasone is the optimum dose?  It used to be 80 mg.  Who is to say that dose couldn’t drop down to 20 mg a week–or even less–and still effectively work to enhance our our chemotherapy?

How about studying the long term affects of using novel therapies?   As multiple myeloma patients live longer, wouldn’t it be nice to know what using novel therapy agents for years–or even decades–does to our bodies?

And what about the MGUS and smoldering myeloma patients?  How about some answers for them?  I can only imagine how difficult it is to be “watchfully waiting” for years and years…

I could go on and on.  But for now, I hope all multiple myeloma survivors and caregivers–along with their families and friends–have a wonderful, side-effect free Christmas day!

Feel good and keep smiling!  Pat