Riding The Wave – Multiple Myeloma

“Without a knowledge of mythology much of the elegant literature of our own language cannot be understood and appreciated.” – Thomas Bulfinch

“Science is a way of thinking much more than it is a body of knowledge.” – Carl Sagan

A fellow TT-er and I were corresponding recently about an article we read and the study done. One of my favorite annoying types where they go back and look at collected data that is completely unrelated to what they are looking for and put together an analysis of what they see. In other words, it’s what I like to call a dead study. It’s not a currently active study of patients (often from different facilities and treatment protocols), but trying to piece together in hindsight, some data to prove or disprove something. I’m not saying these types of studies don’t have some value, but for me, they have not proven to be of much value in the way they are administered in Myelomaville. There are too many variables and subjectivity in what they can discount or count in their analysis. Anyway, we were both, independently annoyed by it and that started another line of dialog and I ended with “are we just TT Snobs?” We laughed, but in all seriousness, are we?

Those of us who chose to embark down the road of Total Therapy treatment for our Multiple Myeloma whether at UAMS in Little Rock, Arkansas or Huntsman Cancer Institute in Utah, we often feel attacked by others in the MM community, and non-TT oncologists. And then the non-TT crowd often feel looked down upon by us. It’s not mutually exclusive, this awkwardness, we both experience. To add insult to injury, and I’ve written about this before, the criticism is almost never from anyone with firsthand knowledge of the Director, the facility, or the treatment protocol. (That is not to say there are not a few unhappy TT patients out in the world, there are.) 

We (TT folks) very quickly, do tend to get what I call the Mac/PC att-i-TUDE. You know what I mean. If you have a PC you never mention it. If you have a Mac, you ALWAYS mention it (I have a Mac, bet you aren’t surprised!).

For years, having a Mac caused a bit of a chip on our shoulder, constant ribbing by our less fortunate PC friends. Though that seems to be ebbing of late with the advent of being able to run Microsoft OS on our Mac’s now, which my friend and old neighbor Paul (a longtime Mac user/fan) called a bit like polishing a turd (running Microsoft OS on a Mac)! You get the idea.

We do indeed have att-i-TUDE. We really don’t mean to, and for many of us, over time, we become very sensitive and try to be “careful” in our online conversations with others about our treatment, and/or opinions about theirs and things they are told by their doctors. Sometimes we fail miserably. Many of the TT crowd, just refuse to participate in the conversation. I understand completely. They aren’t going to justify or defend their decision – they have more important things to do than get caught up in something that is already a done deal for them, like living their lives – it’s not their fight. Fair enough. (When our local onc jumped on us very forcefully and negatively about having done TT, sharing unattractive gossip and innuendo about the Director at MIRT, Dave said, “Well doctor, the horses have left the barn and the barn door is closed. Where do we go from here?”)

So are we Titans or are we Snobs?

I think we are probably bit of both, and more… We are knowledgable certainly — forced in an effort to defend our decision as well as by the aggressive treatment course. We have to become knowledgable on a high level due to the treatment being done entirely as outpatient, in order to take care of ourselves or loved one for all the hours we are away from the hospital/infusion center each day. We have to know what to watch for, what to do, when to call, when to hit the emergency room. We learn to flush port lines, give shots, and attach infusers. We try to answer all the questions of our patient when they become concerned about some new thing going on with their bodies. We take classes. We have our 24 hour phone number at the ready. That is certainly not to say that the non-TT crowd isn’t knowledgable or have a lot to contend with, but let’s face it, if the prevailing view is our treatment course is the most aggressive and arduous, then you would expect us to have to know quite a lot. And doing it all outpatient is still a rarity, though it is beginning to spread. It’s cheaper and actually safer. (Our new local APN said it was VERY DANGEROUS when she learned of it, and I corrected her and began to tell her why it was much safer and that they had been doing it successfully that way for about 19 years. Dave gave me THE LOOK, so I stopped. He’s the shut up and live your life TT group.)

Having said that, those who choose to go to the big research/university facilities, whether for TT or something else, are blazing the trail, trying cutting edge drugs and procedures, and I for one am very admiring. We all benefit. Eventually it filters out to the local cancer centers. So the next time you are thinking how crazy we all are, just remember that much of what you are getting comes from those big research think tanks and all us brave guinea pigs. Problem is, it takes time for it to trickle to the other locals oncs and get in practice, and that’s where some of us who have taken the TT road get frustrated, for you.

We move forward with Total Therapy, despite its controversy, often in spite of the opposing opinions of many “in the know” with all the appropriate credentials we should be impressed by, and are. Ultimately though, no matter what we decide, we must all OWN our decision. I continue to improve (I hope) on my ability to be very respectful of one’s choice and decision in these matters. I’m not perfect. I’m a TT devotee and always try to disclose that fact when sharing information with others. But you have to decide. I think sometimes we just want to make sure you aren’t getting out-dated information regarding your disease and treatment opportunities. So forgive us if we seem a bit pushy. We didn’t start out that way, we were once right where you may be now.

 Scared, defeated, unsure, hoping, praying, researching, crying, managing, coping, etc.

As we chose to move forward with TT, we are no more certain of our course of treatment or decision than you are. Some may have done a lot of research and some may be following their instincts. Some may have even been referred and didn’t give it a second thought. Most of us become more certain as we move along through the course of our treatment, meeting other patients who have been there, done that, who graciously share their stories. Whether we make it through or not, we know we have done all that we can. (This doesn’t count those who go the complementary/alternative route which is a whole other wonderful and interesting subject – Check out Dave Emerson’s story.)

So I say this a lot, as do others, get second and third opinions. Don’t be lulled into “liking” your doctor and believing everything he/she says as universally accepted in the treatment of Myeloma.

There is nothing universally accepted in the treatment of Myeloma! – Absolutely NOTHING!

On that, the seasoned MM patients/caregivers will agree. In fact, its the only thing we probably all agree on 100%! (That, and Myeloma sucks!) There is no universally accepted treatment or answer concerning Multiple Myeloma.

When you are getting that “other” opinion, I hope you consider going to Huntsman in Utah or UAMS/MIRT in Arkansas, even if you don’t think you can imagine yourself being far from home treating there. You will learn so much about your disease and you will get the best diagnostics of any facility bar none, in the world. You will have a chance to meet and talk to so many other patients with Myeloma. It is five days of tests. Very comprehensive. You will leave with full reports on every test done to take home to your local oncologist along with a letter from the consulting physician who reviewed your case. You can then move forward from there, with more knowledge and probably more uncertainty and questions, but at least you will have a much better idea of your disease presentation, and hopefully which way to jump.

Once you decide, don’t look back. Whatever decision you have made, it was the right decision for you at the time, given what you knew and all your life’s considerations. Trust me, whether you do TT or something else, we are all pulling for you. And even if you do TT, there are no guarantees in Myelomaville.

*** Dr. Tricko has left Huntsman and moved to Iowa. It is up in the air whether Huntsman will be administering Total Therapy protocols. I would suspect not.

 Myeloma Briefing Fall 2009

Tags: David Emerson, Huntsman Cancer Institute, MIRT, People Beating Cancer, UAMS