Riding The Wave – Multiple Myeloma

The Myeloma Beacon (click link)

published another great article today by Dr. Vincent Rajikumar, (a professor of medicine at the Mayo Clinic in Rochester, Minnesota. His research focuses on clinical, epidemiological, and laboratory research for myeloma and related disorders.)

First, if you aren’t reading The Myeloma Beacon regularly as a caregiver or patient of Multiple Myeloma, I strongly urge you to do so.

Second, I was very pleased to read Dr. Rajikumar’s refreshingly honest portrayal of his own personal views on treating MM, despite the fact that Dave and I took a completely different path from his opinion.

Dr. Rajikumar, correctly stated the debate, statistics, and his personal and professional expertise in how and why he would choose to treat patients in a particular way.

One of the peeves I have had since we started this journey was physicians interjecting their personal and unprofessional views about Total Therapy and Dr. Barlogie. What it does, for me anyway, is negate almost anything else they have to say. I would much prefer a full disclosure of their bias while offering their professional opinion, backed up by their assessment of medical data. I would be better able to sort through the information they were disseminating to us if they weren’t gossiping in a derogatory way about other physicians (who often they have never even met!).

My other major peeve is, how outdated treating physicians are on MM. As I wrote in my article, Why a Researching Physician vs. a Treating Physician, treating physicians are not researching or attending multiple myeloma conferences where the latest research papers are orally presented, followed by Q&A sessions. Instead, they are treating their MM patients based on articles published in the Blood Journal (albeit a highly regarded journal). There are several problems with this approach, in my humble opinion. As I write in the article, the length of time it takes for a peer reviewed paper submission to get into print, can make the data in the paper quite outdated. This is certainly a concern for a disease such as MM, which is very fluid in both its research and new drug therapies. Secondly, all journals have parameters for publications – limited word length, numbers of figures, photographs, graphics, and the like. With this in mind, regardless of the choice in treatment you ultimately make, I strongly urge you to get consultations from actively researching physicians in the area of Multiple Myeloma. They are on the cutting edge, they collaborate with others researching the disease, they are writing papers and attending conferences and participating actively in the debate.

A researching physician and facility, will have their own survival numbers published openly. They have treated this many patients, done this many SCTs, and have this many patients still living. A treating physician will not have this data and the ones we consulted with were quite offended by my naively asking such a question! It seemed so appropriate to me at the time. They were bashing “Total Therapy”, left and right, bashing Dr. Barlogie, left and right, so I asked, “What are your patient statistics doctor?” I mean, come on… you are making us feel STUPID for even considering a Total Therapy approach to my husband’s Myeloma, they have published their patient survival numbers… where are yours? What statistics can you give us to help us make our decision? Nothing, nada, no way Jose! If you want to have some fun, just ask them, how many MM patients they treat a month and how many are still alive under their care. Stand back a little bit when you do this… I learned later that it is an unfair question. They are treating hematologists, not researching physicians. OK, well no one told me. Its been a pretty steep learning curve folks.

When you are facing your very overwhelming and arduous decision about treatment, you will have to wade through this information as best you can in making your decision. You are most likely overwhelmed with a cancer diagnosis, a disease you never heard of, a blood cancer vs. a tumor cancer, pain, fear, perhaps organ breakdown, fractures, etc. While Dr. Rajikumar appropriately addresses quality of life concerns when treating aggressively, there is also the quality of life if you don’t treat aggressively. You are still going to be doing chemotherapy, fighting fear, pain, and a whole host of other issues – like your insurance coverage, whether you can keep working, small children, other health issues you may have, etc. Whether you treat aggressively or choose to manage your disease for as long as possible, you are still going to have an altered quality of life, at the very least, emotionally. For some, it changes your perspective on life and family for the better. You wake up and smell the coffee about what is really important. You laugh more about things that would send you into high anxiety or anger BC (before cancer). For others, it changes you in a more painful way, one who lives in fear and worries about what each new test will show. Every ache and pain might be Myeloma. For you, I want to just reach out and hug you, gently, and tell you to try not to do that. Do your best to not waste one minute of your life worrying about things that are not present, right now, but enjoy a beautiful day, a lovely afternoon with your family, a good book, a friend who stops by. Don’t let Myeloma take away your life while you are living. I know its hard, I’ve been there, in those really dark corners, the really scary ones. It’s a daily work in progress.

“Some days there won’t be a song in your heart.  Sing anyway.” ~Emory Austin

Disclaimer: Dr. Barlogie is not our doctor and we have never met him. He overseas MIRT in Arkansas, but our doctor is one of the many wonderful Myeloma researchers there.

BTW, when Dave and I were in LR last, we met a couple and when the husband, the patient, came out from his diagnostic test and his wife introduced us he said, “Wait. Which one of you has MM?” Dave was pretty buoyant the rest of the day. Rightly so.

Tags: Rajikumar, The Myeloma Beacon, treatment debate