Pat Killingsworth Pat Killingsworth

Living nine months at a time…

One year ago, a dear friend of mine passed-away after a long fight against multiple myeloma.  Ever notice how the myeloma usually wins?

Anyway, I wanted to share the post I wrote about his death with you again today–not just because it was the one year anniversary of his passing last weekend–but because using drugs like I wrote about yesterday was the secret to his relative longevity.

Let me explain after you have had a chance to read last year’s post:

My Multiple Myeloma Hero–Loren Liedl–Has Died

Loren Joseph Liedl, 58, of Amery, Wisconsin, passed away peacefully at Willow Ridge Nursing Home with his family at his side. He lost his long hard fought battle with multiple myeloma that started in 1996.  That’s 14 years!  14 years living with—and battling this relentless and insidious cancer.

Loren was a dear friend. Here is what I wrote about Loren in my first book, Living with Multiple Myeloma, which was first published one year ago:

Loren is a hero of mine. He has been battling multiple myeloma for over twelve years. That is an eternity in the myeloma survival business! In 2007, only ten percent of myeloma patients survived ten years or more. That number quickly fell to five percent or less after twelve years. Yet here he was, working part-time and spending priceless days with friends and family, acting like he would live forever! Loren tried every available drug and treatment more than once. “Everything that I have tried seems to work for about fourteen months. The only drug that didn’t work well for me was Revlimid. I had an allergic skin reaction to the drug that makes it almost impossible for me to use.” Loren went on to explain, ironically, his stem cell transplant had only worked for about ten months. Of all the many therapies he tried, the most dangerous and invasive one worked for the shortest period of time. That really got me thinking! Loren suggested on several occasions I delay my transplant. “Always use your conservative options first,” Loren would say. “My transplant wasn’t any big deal, but I know people who have had real problems during and after their transplants.”

Loren’s advice helped me make the decision to delay my stem cell transplant indefinitely—a decision which has turned-out very well for me.

Plain and simple, Loren was a great guy! His wife, Joan, was an exemplary caregiver. Strong and thoughtful, Joan was Loren’s best friend and patient advocate. They lived a very good life together, traveling the world and living every hour of every day right up to the end.

Loren, you will be missed!

Feel good and keep smiling Joan! Take comfort in knowing Loren lived a full, wonderful life.  Take comfort in knowing Loren helped other multple myeloma patients like me.  Thank you, Loren!

A touching story, to be sure.  But I wanted you to know that for all of those fourteen years, Loren used a wide variety of established and experimental therapies to stay alive.

Two stem cell transplants.  Melphalan and prednisone.  Thalidomide, Revlimid, Velcade and some I hadn’t even heard of.  Each therapy worked for him around nine months.

That’s right.  Each of his transplants only worked that long.  Same with Revlimid and Velcade.   Same with melphalan.

So Loren and his Mayo Clinic doctors developed a plan which helped keep him alive for years longer than anyone had a right to expect.

They just kept experimenting with and switching therapies.  One after another.

And that’s where bendamustine comes in.  Had it been available, I have no doubt that bendamustine would have worked for Loren–you guessed it–nine months.

That’s why I think all of these different salvage therapies and salvage therapy combinations are important.

Because after a while, those nine month respites start to add up to real time.

And your doctor won’t always think to suggest using some of the older, less often used options once Revlimid and Velcade no longer work.

New therapy or old it doesn’t matter–as long as they work.

Feel good and keep smiling!  Pat