Riding The Wave – Multiple Myeloma

“All doctors have proven to me is that they are good enough students to get through med school.” – Lori Puente

Another favorite of mine that my friend and former mentor used to say to me was, “Remember, they are ‘practicing’ medicine.”

I don’t mean to be a doctor basher. I have many friends who are doctors and many doctors I have met in my life’s journey that I truly respect and hold in high regard. But like almost any profession, there are fewer than I would expect.

When I read a myeloma blog or statement, someone’s journey and recounting of their recent visit to the doctor as they plow through a diagnosis of multiple myeloma I often cringe. I actually have a physical manifestation that shoots through my body and inside I’m screaming, “NOOOOOOOO, that’s not true!”

But what can I do really? I mean, do I write to them or leave a comment that tells them their doctor has no idea what they are talking about and cause further upset and confusion about what they are facing? I struggle with this urge to fix the errors more than I would like.

I think many of us who have been on this road awhile share in this frustration. We’ve surely been there, and as we have traveled this path we have learned of much false data being disseminated by the medical community on the subject of multiple myeloma, treatment, life expectancy, staging, chromosome abnormalities, etc. In fact, most of us have experienced it on a very personal level.

David Emerson of People Beating Cancer once told me that all he can do is keep writing on his website and presenting data. He hopes that people find him and the information. I know that many of us who blog a lot do our level best to be responsible and accurate. Often I will keep a bland opinion about certain articles and just direct you to it. I sometimes do have strong opinions about things, but it is generally more about helping you to deal with your journey in the hopes of giving you some strength and a new way of thinking about it. But you each have to find your own path and go through the learning curve.

Perhaps its a bit like a parent, you don’t want your kids to make a mistake you made, or fall down and get hurt. And yet, they will and you need to let them – Sigh…

So here are some currently:

Life Expectancy: It is no longer 3-5 years. If your treatment physician tells you that little snippet, don’t go past “Go” and collect $200 dollars! Run, and don’t go back. They are grossly ignorant about the changes in treatment and outcome expectations.

• Stat: 85% of all newly diagnosed MM patients are “low risk”. Low Risk MM patients are easily exceeding 3-5 years life expectancy. (see Myeloma Briefing in my “Author’s Picks”.)

Staging: It is a physician’s subjective analysis of how much the myeloma has impacted your body based on some guidelines. It is not as clear cut as you might think in many cases. It is not a determination of the ultimate outcome of your treatment and life expectancy. It is also not a gauge on how fast or slow your MM is progressing. It does not indicate if you are low risk or high risk. It is not the same as what we understand about tumor cancers. This is a blood cancer and very different. (If you are smoldering, I urge you to visit Margaret’s blog, because you are a unique position to be monitored and do many things to keep you in that category.)

Radiation Treatment: Another controversial area in MM treatment that has not been definitively sorted out through studies. However, most of the big research centers do not use radiation treatment for MM. It can hamper stem cell collection and is not a toxin worth putting your body through in your treatment. Better to just get treatment started. It seems to be most often used to reduce large lesions found at diagnosis. 

Chromosome Abnormalities (Cytogenics testing): Deletions of certain chromosomes that have been routinely used to determine whether you will respond favorably to treatment or be resistant, is old standards. UAMS no longer views these as HR markers and still is the only facility that does Gene Expression Profiling in staging your treatment course and has decades of data to know how to interpret this data and get you properly categorized in Low Risk, High Risk and now Ultra High Risk categories.

• To improve the prognosis for patients with t(4;14), Dr. Rajkumar, who was not involved in the study, suggested focusing research on initial therapy. “Data from the University of Arkansas for Medical Sciences shows that with aggressive Velcade-based initial therapy, transplant, and then Velcade-based maintenance, survival of [patients with] t(4;14) can be similar to [those with] standard-risk myeloma,” Dr. Rajkumar told The Myeloma Beacon.

Treatment: There is no standard treatment of Myeloma. If your doctor presents to you what he is going to do, know that it is one opinion. It is not the standard of care, because there is none. It is up to you to take it all in and then do further research and meet with other doctors to discuss your case. Please don’t keep going to treatment facilities that are essentially doing something similar. This is not a family entertainment center where you want to get bids on the same thing for the best price. You want an apples to oranges comparison. You want to include a researching facility in your consultations. Go ahead and start an oral treatment, and get yourself somewhat stable, but use the next 3 months to find the right treatment course for you. (Unless of course you are in kidney failure and have to be quick and aggressive at the outset. But once stable, make those consultations come to fruition.)

. . . 

Treatments, new drugs, approaches in treating multiple myeloma are extremely fluid. Even things that were done when Dave and I went through his treatment are changing rapidly. There are really two treatment courses in the standard medicine area (not including the alternative therapy route, and yes there are some, read David Emerson’s personal story at his website). Basically you can manage your disease with novel therapies alone, or you can do the stem cell transplant therapy that includes these same novel therapies in the mix. And then there are different approaches in each of those. The old debate was between one SCT and tandem SCT as up front therapy. Now it’s between low dose consistent novel therapy drugs alone or high dose novel drugs with a SCT to recover your immune system. Though there are still some squabbles about single vs. tandem, it is not the center stage argument that it once was (tandem having the edge currently, but again, based on your treatment goals, that may or may not matter).

Which is best for you? Those are the dilemmas you have to sort through. And much of it has less to do with the treatment and more to do with your age, finances, insurance, physical condition, and treatment goals – and rightly so.

I know this is hard. I would imagine even some of you want me to tell you exactly what you should do. But I can’t. I will take Dave Emerson’s very wise course and just hope that you find me, read through my blog posts and garner strength to ask the right questions and make the right decision for you and your family. Know that I am pulling for you and that once you find the treatment course that suits your personal situation and treatment goals, it is the right decision for you. Look at my post on Newly Diagnosed (in Author’s Picks or related posts at the bottom here) as it gives you some questions you want to ask the doctor who will be treating you.

And yes I do field emails and I do answer questions or direct you to those I think will be able to answer anything I cannot. You can use the “Contact” form at the top of the blog to begin a private dialog. The MM community is very gracious and willing to have dialog with you on sorting through your options. 

Tags: mis-stated facts, myeloma understanding