This may be a bit off topic, but it takes a lot to really get me upset. Time to rant…

Hello from sunny Panama Beach!  My best friend’s wedding went off without a hitch this morning.  Beautiful, sunny weather.  A gorgeous bride, Lisa.  Delightful family and guests.  I was best man–and didn’t lose the rings!  Everyone was bare foot and all are happy and sun burned.  Congratulations Tim and Lisa!  Tonight we will all meet at an international Jazz Fest held nearby.  No wi-fi in our very large, well appointed gulf-side suite,  (Is that even possible in 2010?)  so I can’t write long. I felt great today!  Little if any talk about multiple myeloma, cancer or meds. 

It’s 7 am. Pattie and I are getting ready to head to northern Florida—the panhandle—for my best friend’s wedding. My college roommate, Tim Hanna, is marrying a wonderful woman named Lisa. They have been seeing each other for several years now. Tim is the three term mayor of Appleton, Wisconsin, a small city of about 100,000 people near Green Bay. Lisa lives in Appleton as well and manages a credit union there. They both love Florida—especially the Gulf Coast. Having vacationed in Panama Beach in the past (and knowing Pattie and I now live in Florida), Tim and Lisa decided to get married here in Florida. The wedding is scheduled for Friday morning—on the beach. How fun! I will be best man. We would be more excited if it wasn’t a six hour drive from our home here north of Tampa. But we have never been to that part of the state. The weather forecast looks spectacular—sunny and 80 degrees each day. I am in between Revlimid cycles, so my energy level is good. My bone pain has been tough to deal with lately, but it isn’t anything a little warm weather, Tylenol and oxycodone can’t handle!

I love the way the New York Times allocates enough space to allow their writers to report all sides of a story.  I found another example of this while reading “Cancer Survival Demands Steady Progress,” an article by JANE E. BRODY, Published: April 12, 2010.  Ms Brody’s article is about a multiple myeloma patient, Janet Battaile.  Excellent work!  Click on the link above and read it when you get a chance.

Here is a link to a Dallas area Star-Telegram article about Elijah Alexander’s life and death: 
Former Dunbar, NFL star Elijah Alexander loses battle with cancer.  Writer Clarence Hill, Jr. provides us with a few more details about his death–but a lot more info about his life.

Here is a link to the first part of a two part analysis of a research study about smoldering myeloma I found on an excellent alternative medicine for multiple myeloma patients named Margaret’s Corner:  Smoldering (asymptomatic) multiple myeloma: current diagnostic criteria, new predictors of outcome, and follow-up recommendations. Part I.  Margaret is not a fan of conventional chemotherapy or the drug companies–she feels they push unecessary meds on patients before they have been given the option to try less expensive, natural alternatives–especially during the early stages of multiple myeloma. It is always good to get a different perspective–and Margaret is passionate and thorough.

The Tokeda Oncology Company (Millennium) announced today that the U.S. Food and Drug Administration (FDA) has approved a supplemental new drug application for Velcade, which expandsthe label to include long-term (median follow-up 36.7 months) overall survival (OS) data from the landmark VISTA trial.

Good news and bad news from yesterday’s oncology appointment. First, the bad news. Two months ago, the pathologist noted he saw what might be just a shadow–a trace–of monoclonal protein in my blood work. In other words, after eighteen months, my myeloma might be back. Thursday I learned this was indeed the case. This time a different pathologist, Dr. Pamela Steele, interpreted the results. Her finding was similar and more definitive than the report from last month:

I am getting ready to grab my coat and rush out the door for an appointment with my medical oncologist Dr. Anderson.  Today is the day I learn if my myeloma has indeed returned–if my M-spike is measurable for the first time in eighteen months.  Two months ago I received a report from Dr. Anderson referencing a possible recurrence–reemergence–reappearance.  Anyway you say it, my myeloma may be back.  If it is we will deal with it–just like many of my readers do everyday.  Maybe I will get a chance to try one or more of the exciting, new experimental drugs I have been writing about! 

Don’t miss our seven part series about the International Myeloma Foundation’s Statement of Principles for Cancer Patients on my other site: www.HelpWithCancer.Org.

One of my readers recently used this phrase in her comments: Be patient—be persistent—be positive!
Don’t you love that! I would add it to my regular sign-off line, but it is long enough already. Still, for today…
Feel good, keep smiling and be patient—be persistent—be positive! Pat

My wife Pattie’s mother, Marie Doyle, died today from complications associated with her ten year battle against colon cancer. I just completed writing a long, personal post about this on my other blog, www.HelpWithCancer.Org.
I hope you can read that post–I’m running out of energy tonight to say much more here. Even if it is difficult for me tonight, I hope all of you can feel good and keep smiling! Pat

One of our readers, Jerry, just made an excellent comment about yesterday’s post. He likes the technical info and feels he can always skim over results or numbers that don’t interest him. Check out his comment and my response. I was trying to make two points. First, it takes most myeloma patients six months to a year (or longer)to even get up-to-speed and have the ability/interest to recognize and understand IgG, IgA, M-spike results and basic chemotherapy options. (Another argument for waiting a while after your initial diagnosis to proceed with a stem cell transplant, don’t you think?) I want newly diagnosed patients, who are already overwhelmed with their new normal, to feel like they are a part of our growing Online community. Second, I believe some patients get too hung-up on their own numbers and tests. I’m just concerned an obsession with numbers for a myleoma patient is a losing game. Our numbers will almost always creep-up at some point. How we continue to live positive, productive lives in the face of such adversity is the most important thing, isn’t it? And the great news is, for most of today’s myeloma patients, there is usually genuine hope in the next very expensive pill bottle or IV bag.
So feel good and keep smiling, my myeloma brothers and sisters! Pat

As many of you know from reading our blogs, my wife Pattie and I recently moved to Florida. Or should I say my wife has moved to Florida. I spend two weeks of each month with her there. Then I spend the next two weeks here in Wisconsin. Pattie is an administrative assistant for several dialysis clinics and is learning to work with patients who practice home dialysis. This is a big change for her. Prior to the move, Pattie helped me in our real estate business. Before that she was a history teacher. I am still working with my real estate partner, Bruce, part-time here in St Croix Falls. Tomorrow I am off to the airport to fly back to Florida. My tired, damaged bones will feel much better in the hot, humid Florida weather! I enjoy travel days. Lots of time to think and write.
So, until tomorrow, feel good and keep smiling! Pat

Here is an encouraging study from Mayo Clinic using new drug pomalidomide. Pomolidomide is an analogue (similar to) thalidomide and lenalidomide (Revlimid). This is great news for those of use trying to avoid a stem cell transplant using novel chemotherapy agents like Thalomid, Revlimid or Velcade.

I wrote this post in July. Thought it was worth another look:

My neighbor at our home in Tampa, Florida has myeloma. The brother-in-law of the woman I sat next to on the flight back to Minnesota has myeloma. My mother’s best friend has myeloma. Can it be true? Only 19,000 new cases of multiple myeloma are diagnosed each year in the United States, yet everywhere I turn I meet someone who has, or knows someone who has myeloma. Myeloma, myeloma everywhere! Once people learn about my disorder, they begin to share stories of family, neighbors or friends who also have multiple myeloma. And with more myeloma patients living longer than ever before, I shouldn’t be surprised to meet and hear about so many that share my cancer, no matter how rare.
Feel good, keep smiling and keep living, one day at a time! Pat

I needed to help a family member and another myeloma patient this evening so I will keep this short and get back on track tomorrow. Jake, a member of my myeloma support group in Stillwater, Minnesota called me in Florida today to see how I was doing. Our conversation was brief, but memorable. When I asked his how he was doing, Jake replied: “I have good and bad days. But I try to remember that, on a bad day, a good day is coming. That helps me keep going.” Amen, Jake!
Feel good, keep smiling and remember everyone, tomorrow will be one of those good days! Pat

I have found over the years oncologists have been divided over maintenance therapy for multiple myeloma. Some feel as soon as the cancer is under control, stop. That way, when the cancer comes back, there is a chance the original chemotherapy may work again. The theory: Like other cancers, after it is exposed long enough to any therapy, the myeloma adapts and returns. On the other hand, some oncologists believe it is best to keep the myeloma “down” by using maintenance therapy and continuing it, often in lower doses, until the drug begins to lose effectiveness. Trouble is, there is very little data to support either position. These physicians are just going by their “gut” – their instincts, their opinions. Worse, oncologists are often hesitant to give an opinion at all, leaving the difficult decision to an emotionally and intellectually ill prepared patient. Ultimately, most revert to the standard fall back position – transplant. When in doubt, undergo a stem cell transplant. This has always surprised me. Transplants can be effective. They can go well and, other than the three or four months a patient loses from their life (being unable to work and often staying away from home…Oh yes, and don’t forget the expense!) Transplants are a proven, standard therapy in myeloma. But it is an invasive procedure. There can be serious side effects. And sometimes they just don’t work. So why the rush to transplant? My theory: Ask a surgeon what to do and they will most likely suggest surgery. No surprise there! Surgeons see the world a certain way, pro-actively. I view the transplant issue in the same way. Like surgeons, oncologists are likely to suggest the most aggressive therapy possible.

I left the myeloma conference in the Twin Cities early today to catch my flight to Tampa. As usual, my flight was not non-stop. I am in the Charlotte, North Carolina airport and I don’t have much time. But I wanted to share an exchange I had with a fellow passenger tonight. I sat next to a charming, middle aged woman from New Orleans named Barbara. While she enjoyed a glass of wine, we shared each other’s stories as is often the case during late-night evening flights, when it is so hard to write. Born in Germany, Barbara grew up in Charleston, later moving to the island of St Thomas. She now lives in New Orleans and is busy restoring a small, eight room hotel just outside the French Quarter. Barbara was/is not comfortable talking about death and cancer. (I must be fun to fly with – a real barrel of laughs!) But as I reassured her I was going to be OK, the conversation took-off. While she excused herself to go to the rest room I noticed an incredible sunset out the plane’s right side. I sat fixated by the deep red and gold colors that were mixed-in with the clouds. I paused to share the experience with some of the other passengers. All were reading, or listening to music. They were indifferent to the almost indescribable beauty, just outside their windows. Cancer has opened my eyes to priceless experiences like these. Their loss, I guess!
After the plane landed and the other passengers began to disembark, Barbara and I exchanged good-by’s. I told her to keep having fun and travel safely. She surprised me by saying “Keep breathing!” Short, simple, real. Sunsets and new, unexpected friends. My back hurts, my bones ache and I’m tired. Isn’t it great to be alive! Thanks for indulging me these personal reflections. I will write more about my conference experiences tomorrow. I have so much to share!
But for now, my flight is boarding. Feel good, keep smiling and breathing! Pat