Arnie’s Rebounding World: How Doctors Think
When I was first diagnosed with multiple myeloma five and a half years ago, I was told by my local oncologist that the place to go for treatment was the University of Arkansas. So that was the first stop on my multiple myeloma journey.
I was introduced to the aggressive Arkansas Total Therapy protocol: high dose chemotherapy with multiple active agents, followed by tandem (two back-to-back) stem cell transplants, and then two to three years of maintenance therapy.
The team of physicians and staff there were well trained and highly qualified. They were adamant that this was the best treatment. I was scared and more then a little daunted.
Before making a decision, I returned to Tampa, where I live, and got another opinion at Moffitt Cancer Center. Their recommendations for initial treatment were very different than the Arkansas program: a different induction treatment and one stem cell transplant.
Moffitt is also a very well-regarded cancer center, and the physicians and staff were well trained and highly qualified. They were equally assured that this was the way to go.
I relate this story not to debate the relative merits of the two different treatment centers or their preferred treatment regimens but to reflect on the fact that two highly qualified experts in the field had widely differing opinions about the best treatment.
Jerome Groopman, M.D., in his book How Doctors Think notes, “Most people assume that medical decision-making is an objective and rational process, free from the intrusion of emotion. Yet the opposite is true.”
As patients, we want to look to our physician as the one with all the answers, the final word. However, this is not always the case. Physicians are people too, and they are subject to the same emotions, motivations, and decision biases as anyone else. They can have good days and bad days. They can be tired. Decisions can be strongly influenced by something they saw recently. Decisions can be influenced by career and professional considerations.
The other problem is that there is a tremendous amount of uncertainty in medical decision-making, especially in an area such as the treatment of multiple myeloma where the landscape changes so rapidly.
Which treatment option really is better? It should be easy enough to figure this out. Do clinical trials to figure out which is better.
As Dr. Groopman notes in his book, “This seems simple but in fact ignores the complexity of human biology and patients’ needs.”
Everyone is different; no clinical trial is going to tell how an individual is going to react to a given treatment. So dealing with uncertainty is an essential part of the process.
When I was young and new in my medical practice, I was afraid to say, “We don’t know,” for fear that patients would think that I was too young, inexperienced, or poorly trained. As I grew older and more secure in my own abilities, I became more comfortable with the idea of uncertainty as part of practicing medicine.
This has been especially true when dealing with multiple myeloma. The doctor does not always know the best course of action. Sometimes it’s just based on a feeling, colored by an experience they just had, affected by the patient they saw in the next room, or a shot in the dark.
At this point, I’m OK with the fact that my doctor might say, “We really don’t know the answer to that.” In fact, I respect them more for having the ability to say that. I realize that with the treatment of multiple myeloma, as with almost everything in medicine, there are more questions than answers.
Hippocrates said almost 2,500 years ago about the practice of medicine, “Life is short, the art [of medicine] long, opportunity fleeting, experience delusive, judgment difficult.” The fact that we have so much more knowledge, medications, and technology now has not altered that one bit.
The bottom line is: understand that doctors are people too. While they are highly trained, skilled, and well meaning, they are not infallible and they are not all knowing. Accept the fact that uncertainty is often a critical part of dealing with treatment. Most importantly, what this means is that we, as the patients, must always, first and foremost, be watching out for ourselves.
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I concur with all you have stated Arnold.
As a newly diagnosed MM patient, figuring a decision tree or algorithm for drug therapy is quite complex and there are no guarantees.
Right now, I am trying to make decisions based on fewer side effects as the agent of choice.
The regimen I would prefer if I could choose for myself, would be pomalidomide every other day in combination with carfilzomib daily and lo dose dex. As I believe this regimen offers the least toxicities. Less myelosuppresion from pomalidomide vs. lenalidomide, less peripheral neuropathy from pomalidomide and carfilzomib and less peripheral neuropathy on maintenance with pomalidomide.
Unfortunately, this regimen is not available for newly diagnosed MM nor refractory MM patients.
If I am wrong and someone knows how to make this happen please let me know.
As of now the trial that comes closest to my gold standard therapy is for newly diagnosed MM patients at NIH with MaryAnnYancey...the regimen there is lenalidomide/carfilzomib/dex.
If only life was simpler and you choose your own regimen.
-sigh-
Nice post. I couldn't agree more and often tell folks, that since there is no clear path, visit doctors/facilities with differing views so they can learn about their disease and that whatever decision they make, their goals, and a whole host of other considerations, it will be the right choice.
Arnie you have captured the decision process well. Dr's are forced to make risk/benefit decisions based on their own experience. Since pattern recognition and maturity are essential components of the process the MM treatment process I would recommend a "senior" oncologist be involved.
The other confounding factor I have found is that the oncologists at the key research center are in competition with one another to promote their approach. I have found this to be an unhealthy situation.
My dr. is young & yet he relies on "pattern" more than numbers. When I ask him a question about myeloma, it is prefaced with "in your experience," to which he replies simply & without a lot of extraneous talk. I share with him studies & the latest news about myeloma and I trust he seeks out journals and the internet as much as I do. I continue to see myeloma as highly individual with great importance given to genetics. Suzanne
Thanks for your comments. I definitely agree, there is no substitute for experience. There is no way to replace that "feel" that is gained with time. I also tell people that myeloma is very specialized and I personally am a believer that it is best treated by someone who specializes in it. Or at least in consultation with a MM specialist. Research centers , and even private oncologists, while well meaning, definitely have there agendas (as everyone does) and I am always keeping that in the back of my mind when having discussions. Again you have to watch out for yourself. Suzierose while side effects are an important issue I would not nessasarily make that the sole determining factor. As Gary noted it comes down to risk/benifit. Some of the side effects may be less of an issue than you think ( think Velcade given IM) Personally I would be cautious about jumping to the newer drugs such as pomalidomide that you might need down the road, with out first trying Revlimid (lenalidomide) first. I have been on both, and had way more trouble with side effects including myelosuppresion from pomalidomide. But thats just my opinion. Again, here we go, lots of choices, no easy answers.
Thanks for responding Arnold.
I am somewhat cynical when it comes to how drugs are reserved for refractory patients vs. newly diagnosed. I see it as a financial boondoggle for the industry and physcians.
As you noted the oncologists have very different philosphies from institution to institution and right now I feel that restricting drug use is simply a ploy for the industry to make money. After all, does it truly make sense to 'reserve' therapy if it is the most efficacious? If we know that the cells could become resistant we need to start with the best out the shoot there is no? The way it is presently done the pharma industry reaps more dollars by limiting patients to 'standard of care' first line..already proven mind you not to be highly effective in the majority of patients...so they reap the money off 'first line indications' then when the patient relapses NOW they can be put on the 'new novel agents'...so the industry makes even more money. When you think about the cost of just one drug. That is a LOT of money, and repeat business.
Perhaps that is cynical but I can see no other reason for the restriction of drugs that have been demonstrated to be effective in relapsed/refractory MM patients from the newly diagnosed.
Pomaliomide has been demonstrated to be less myelosupressive and can be given every other day. My concern given your experience is whether there is more myelosupression seen in refractory/relapsed patients perhaps due to prior treatment with a myelosupressive agent. IOW's could the myelosuppression for the drug class (thalidomide) be additive?
I agree there are no easy answers.
I was initially leaning towards making carfilzomib the agent of choice to switch out in the traditional VRD regimen due to it's lower side effect profile with PN and DVT. My oncologist however pointed out that myelosuppression should be of greater concern which is how I began to consider pomalidomide vs lenalidomide.
Particularly, since the pom or len will be the maintenance agent as well.
Arnold do you know , or anyone in the forum, how a patient can go about selecting their own regimen for agents that have been proven to work but simply do not have 'first line therapy' indication?
Der. Goodman,
Which treatment did you choose?
James McMillin
Thank you for reminding us that doctors are people, too! I think a good doctor patient relationship should be a partnership – they have medical knowledge that I don’t, but I know my body and what I am capable of. I need them to be able to explain test results and treatment options to me in terms that I can understand, but once we agree on a treatment program, its my responsibility to follow their directions and be honest about how treatments are affecting me. If I don’t and treatments don’t work, I have only myself to blame!
I don’t worry terribly about a doctor’s age. I find that younger doctors often are more aware of advances in medicine than older doctors! What I do find important is that the doctor, whoever he or she is, have a good support system. Doctors in large practices present their cases to their colleagues on a continuous basis. This means they get input from others who may have more experience, and I benefit from that collective knowledge. Throughout my life the doctors that I have not liked have been doctors who are in practice by themselves.
Susierose, you don't say where you have been getting treatment (local oncologist or major research center), but have you thought about finding a new doctor? Your desire to direct your own treatment plan makes me wonder if you are a good match with your current doctor.
Lyn
James, I chose the less aggressive approach at Moffitt, for two reasons. Now remember this was 5 1/2 years ago and treatments have continued to change all the time. One, I was not convinced at the time that the more aggressive approach in the long run was nessasarily better. I also got a third opinion to help with this. Second the emotional and physical impact of being able to be treated at home surrounded by my own family support rather than traveling to Arkansas was huge to me.
Suzierose I don't disagree with you but I do have somewhat of a less cynical view of the drug company motives. Not that profit is not a factor, but they also have to work under the FDA system. Since pomalidimide is not FDA approved yet it is difficult to get in the setting you are looking for, outside of a clinical trial. Also newer is not always better. Again I am not disagreeing with you, its just that the answers are not really there. Which gets back to my original point. Uncertainty.
Once again, the patient is the true decider. We must work at knowing what is best for us in our somewhat unique situation.
Hello Dr. Goodman,
Many thanks for forwarding your article regarding "How Doctors Think". As stated, have already sent a copy to my GP and will be forwarding it on to my Onc/Hema MM specialist in Seattle. I have a very high regard for her and her medical skills but at our last 3 month check up in August she was definitely having a bad day. From the time that she opened the door and entered the room, she was so stressed out and was very flipant about answering my questions which truly scared me to think that she really didn't give a damn about anything other than getting through the day.
Will have a follow up visit in November and I truly hope that her attitude has changed and we have a beneficial meeting regarding my health issues.
Thanks again and I look forward to reading your articles in the future.
Rita Billson, Fidalgo Island, WA
Dx 5/20/2011 SMM with very mixed test results that have lead to many different opinions.
Hello, Dr. Goodman,
I am just starting this journey, as I was diagnosed with MM 11/10/11. I am sorting out the costs/benefits of Moffitt vs. Arkansas for treatment, let alone trying to learn about the different drug therapies. Of course, I want to choose the center with the best outcomes. Figuring out the logistics of traveling from Tampa to Arkansas is certainly taxing, to say the least. I just wonder with hindsight, if you would advise someone to push for Arkansas over Moffitt?
Your article was right on. Thank you.
Beth Myers, Gulfport, FL
Hi Christa Mom's
Sorry for not responding earlier, but I just made it back to this thread.
At the time of the post, I was not receiving therapy. I had only known for 10 days that I had MM. I was intent on learning treatment options.
Having read about the drugs I had come up with what I believed was the most effective and least toxic regimen. Unfortunately, both pomalidamide and carfilzomib are available to newly dx MM patients through clinical trials only, as neither had FDA approval.
The local oncologist was helping with the sorting.
Because the agents I wanted to use were not on the market I did wind up choosing a clinical trial.
Hi Beth,
Sorry to hear of your very recent diagnosis. You have found the best website for myeloma information. You also bring up a question that has been on my mind for 2 years.
Dr. Goodman:
Assuming Arkansas and Moffitt were both next door, would you still have chosen Moffitt and their less aggressive approach? I know I'm putting you on the spot, but I have never heard this really addressed.
Since Arkansas claims to have very long remissions, I wonder why all hospitals don't treat more aggressively. I realize some patients are not physically able to tolerate the more aggressive approach, but if a newly diagnosed patient is in good health the standard of care should be to "throw the kitchen sink" at the patient for a year or two. (Assuming Arkansas is really way out in front of others with regards to long term remissions).
Are their survival statistics portrayed as openly as other institutions? Is their research peer reviewed?
When reading their website, I do get the feeling they are selling their services more so than other cancer centers. But when I read about those long remissions, I can't help but wonder if I should have gone there.
Thanks, Stan
Stan,
The question of how aggresssive upfront treatment should be may be being answered now that some Institutions are using PCR tests to check for Molecular Remissions (MR). A presentation that will be given at ASH this year was discussed in the forum. It shows the importance of achieving Molecular Remission in MM.
http://ash.confex.com/ash/2011/webprogram/Paper42900.html
Note that Dr. Kroger used an Auto followed by Allo approach to achieve the MR. This type of approach is more likely to achieve a MR than a less aggressive approach, like that used in Arkansas. Note in the charts that those that do not achive a sustained MR relapse at a rate that seems typical of non-Allo patients. I am not sure if there are any statistics showing this outside of the Allo setting.
Mark
Great to see that this post has generated such strong comments. Stan's question about if Moffitt and Arkansas were right next to each other would I still make the same choice to be treated at Moffitt is a great one. As well as should all patients who are able to tolerate it be treated as aggressively as possible as a standard of care?
First of all, let me just say no one treatment is right for everyone and there is no right and wrong answer. Unfortunately the studies do not show a conclusive benifit to one treatment paradigm over the other. And as a physician I have seen the good , the bad and the ugly of medical treatment and know that more is not always better. While I think the Arkansas program does great work it is interesting that in the myeloma world where there really are 2 different schools of thought, there is Arkansas and then there is pretty much everyone else. Also when I was trying to make my own decision about initial treatment and was faced with two different view points, I tried to find a tie breaker , third opinion. I spoke with Dr Ken Anderson also considered to be one of the foremost leaders in the field. He was firmly in the Moffitt camp for initial treatment.
But there is no easy, one size fits all answer. But to answer Stan's question directly I think I would probably make the same choice I did. My gut feeling is that now 5 1/2 years after diagnosis I would probably be in roughly the same place I am now either way. Instead of tandem transplants as initial treatment I have had two transplants, one as initial treatment and one at 5 years for relapse. I have had multiple treatments over the years that do not look too much different than what Arkansas would call maintainance, So here i am at 5 1/2 years still dealing with the disease on a daily basis but still with a good quality of life.
Thank you, Arnold, for your honest feedback in response to the questions you've received. I'm sure I'm not the only reader who really appreciates hearing your perspective on these issues.
Allow me to add two important bits of information that people may find helpful.
First, whether or not we agree that one treatment center's approach is better than another's, and whether those two centers have approaches infinitely better than a third's, I think we should step back and appreciate the bigger picture: Treatment centers across the United States are trying to figure out better ways to treat myeloma patients so that they can attract more patients. The diversity of treatment approaches may be maddening at any given point in time, but it's critical to finding better ways to treat this horrible disease.
We need to keep this in mind when people rave about how great it is that all the people wherever they live get the same (supposedly best) treatment, regardless of where they are. It sounds all wonderful and appealing until you realize that it basically means a MUCH more subdued "competition of ideas."
Second, I am told that there is research floating around out there -- unpublished at this point -- that shows that much less aggressive approaches than those used at Arkansas are providing survival outcomes directly comparable to those touted by Arkansas. I think there even was a presentation given at Arkansas sometimes in the past few months where results of that sort were presented.
I hope we get a look at those results very soon!
Thanks again Arnold!
Dr. Goodman,
You have made my day. I have always felt it taboo to ask the question--not sure why.
Whenever I've peppered my highly regarded myeloma/transplant oncologist with questions about being more aggressive, he's always been very polite but steered me towards a slightly less aggressive approach.
His words of wisdom were "You're feeling good now aren't you? That should count for something, right"? It took me a week or so to really digest the wisdom in that statement.
Thanks again.