What I wish I knew about Multiple Myeloma treatments 25 years later...

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Multiple Myeloma-When Your Diagnosis is Stage III

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“However, “it is also important to realize that the time of a (stage III multiple myeloma) diagnosis may not be the best time to give patients a lot of information,” he added.”

I agree with the article linked below that oncologists must be direct with patients recieving a diagnosis of stage III multiple myeloma (MM). Stage III is the most advanced stage of a MM diagnosis unlike other cancers.

My problem with conventional oncology is that while the newly diagnosed MM patient may not be able to absorb detailed information about his/her advanced MM, many MM patients are told to begin aggressive therapy immediately.

If an oncologist is going to give patients time to learn about multiple myeloma, they should also give patients time to think about possible therapy plans.

Unpredictability is the hallmark of a multiple myeloma (MM) diagnosis. Even a diagnosis of advanced MM. After studying and coaching multiple myeloma for more than 20 years, I’m more confident talking about side effects than I am about a MM patient’s prognosis.

I reached end-stage MM in September of 1997. My fourth oncologist in four years told me that there was “nothing more that they could do for me.” I understand that my case is an outlyer as MM goes. I began an alternative therapy two months later and achieved complete remission 17 months after that.

My point is that if you recieve a diagnosis of stage III multiple myeloma, take a week or two to think through your options. I think you will appreciate it in the long run.

Have you been diagnosed with advanced multiple myeloma? To learn more about your options, scroll down the page, post a question or comment and I will reply to you ASAP.

Hang in there,

David Emerson

  • MM Survivor
  • MM Cancer Coach
  • Director PeopleBeatingCancer

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Straight Talk Essential When Advanced Cancer Is the Diagnosis

“Explaining to a patient that they have stage IV cancer (stage III multiple myeloma) is a difficult scenario, but it should include a candid discussion about life expectancy and treatment efficacy so as not to build false hopes.

Otherwise the patient cannot truly give informed consent to treatment, argues Donald Brand, PhD, adjunct professor at the NYU Long Island School of Medicine and former director of Health Outcomes Research at NYU Winthrop Hospital, New York City.

“Doctors are experts at delivering bad news to their patients,”  But they can fall into the trap of wanting to cushion the blow or spare patients’ anxiety, and so they may quickly move on to discuss potential treatments, he noted…

In an interview with Medscape Medical News, Brand described an experience of what he calls “fudging the reality” when he accompanied a relative to what turned out to be a fateful appointment with their oncologist.

“The stage IV cancer diagnosis (stage III multiple myeloma) was delivered and then right away the focus was on the treatment. It struck me that the conversation went quickly from ‘this is what you have,’ to ‘and this is what we can do for you.’ There was very little discussion about the prognosis, about the trajectory of the disease. There was an elephant in the room that was being ignored,” he recalled.

Also, in this particular case, the treatments were proposed without any decision-making on the part of the patient, he said. The treatment options were presented “as if there were no decisions for the patient to make.”

“But the fact is, treatments are toxic and may have marginal benefits,” he continued, “so the patient should be able to make an informed decision about whether they want to go through all of that just to gain a few extra weeks of life, if that.”

“Incurable but Treatable”

Brand acknowledges it can be difficult for oncologists to admit treatments offer marginal, if any, survival benefits. “So it’s not surprising that a clinician may fudge things a bit. Doctors may tell the patient that their cancer is incurable but treatable, or that each individual is different and they can never know how an individual will respond to a particular treatment,” he said.

“But it would be much better for the patient to hear straight talk about their prognosis and what the actual efficacy of the treatment is,” he noted.

The same issue was recently highlighted by ethicist Art Caplan, PhD, in his Medscape video commentary Stop Trying to Soften Bad News for Patients.

Caplan discusses the case of a physician with advanced pancreatic cancerwho found that his fellow doctors couldn’t be blunt with him about the pretty lethal diagnosis. Nobody would use direct and honest language, and they avoided the word ‘dying.’ But for him, it was important as he wanted to plan and prepare for his death. It was important to him to put his affairs in order, to say goodbye to people, and to watch certain movies and shows that he loved before he couldn’t do that anymore.

Caplan argues the case for straight talk, for explaining to the patient the prognosis, even if — and perhaps most importantly — it is bad news. He also offers advice about how to go about it.

“Probably the most important thing I’ve seen that I thought was effective is presenting the information, letting people understand what it means, but then coming back and going over it again at a later time,” he says.

“I think repetition is important. Ask the person if they’d like to have a family member or a friend present when they come back to talk about it further. Make sure that you spend the time — not just once, but more than once — to convey the information.”

He also acknowledges how difficult the whole process can be. “It’s hard to process bad news. It’s hard to listen and it’s hard to understand what’s really being said sometimes, even when it’s plain, blunt, and direct. I’ve seen studies that say as few as 10% of cancer patients understand that they have a terminal diagnosis even though they have been told.”

Explaining the Diagnosis 

In his article, Brand argues that the way efficacy data are presented in the medical literature often contributes to the problem of spelling out bad news.

“It can be difficult for clinicians to interpret the data because randomized clinical trials and meta-analyses typically report results using hazard ratios, often accompanied by survival curves comparing treatments. The hazard ratio summarizes in a single number the magnitude of the difference between alternative treatments over a study’s entire period of follow-up.

“While this mathematical construct does incorporate the essential information, it does not effectively communicate the meaning of the information in a way that can help clinicians and patients compare alternatives and make informed choices. A nonstatistician gains little insight from knowing that for colorectal cancer the hazard ratio for chemotherapy versus no chemotherapy is 0.65 (95% CI, 0.56 – 0.76),” Brand writes.

Brand also decries the medical literature for increasingly shifting the focus away from survival as an endpoint to tumor response or progression-free survival.

“These surrogate endpoints have a practical advantage over survival in that they require a shorter period of follow-up for data collection,” he notes. But they can be somewhat misleading, he argues.

“If a tumor shrinks or fails to grow for 6 months, that must be a good thing. It shows that the treatment has suppressed the cancer and gained the patient some time. But the problem with this narrative is that indicators of disease progression have not shown a consistent correlation with patient survival, which is the uncontested scientific gold standard for measuring efficacy,” he writes.

“Since chemotherapy almost always has a greater effect on these outcomes than on survival, the shift in focus tends to make results look more favorable,” Brand continues.

In recent years, more than half of all clinical trials leading to drug approval by the US Food and Drug Administration for oncologic indications have used surrogate outcomes, Brand notes in his article. Many others have also noted this shift and pointed out that most of these drugs approved using surrogate outcomes do not improve survival or quality of life, as previously reported by Medscape Medical News.

Educational materials by organizations such as the American Cancer Society, National Cancer Institute, and Susan G. Komen foundation, offer a lot of information about incidence, diagnosis, staging, and treatment, but virtually ignore survival, he said.

“If a patient agrees to undergo chemotherapy without a basic understanding of treatment goals and efficacy, the minimum requirements for informed consent have not been satisfied,” Brand argues.

“Since patients receiving chemotherapy for advanced cancer typically lack this understanding, they have most likely given uninformed consent,” he writes.

This issue was highlighted in a study published in 2012 the New England Journal of Medicine, which found most patients with advanced lung or colorectal cancer mistakenly believed chemotherapy might cure their disease. The finding raises questions about whether patients really understood the goal of treatment, the authors commented at the time, as reported by Medscape Medical News.

“Rather than try to soften the blow of a diagnosis or a prognosis, oncologists could give straight talk about late-stage cancer that can give patients realistic hopes instead of false hopes that are apt to be betrayed later on. Glossing over the reality of the situation can give false hope and may explain why so many patients believe their metastatic cancer can be cured and why so few patients with advanced cancer decline chemotherapy,” Brand concluded.

“I certainly agree with Dr Brand that there are too many times when a patient asks questions about what to expect and they’re not really given straight answers, or doctors don’t really offer to talk about what to expect in a straightforward way. I do think that’s a huge issue,” Back told Medscape Medical News.

However, “it is also important to realize that the time of a stage IV diagnosis may not be the best time to give patients a lot of information,” he added.

“Physicians need to pay attention to and understand the effects of the emotional reactions that patients have,” he continued. “Most patients talking to an oncologist, especially the first or second time about a stage IV cancer, are really scared, even terrified. And what that means is that they actually have a pretty limited bandwidth for information,” he said..

Some patients are willing to go through grueling treatments for what others might see as very little benefit, Back said.

“It is very variable. It is a piece of work for the oncologist to be clear about what the benefit really is, and also about how that fits into how much a person is willing to go through,” he explained. “How much somebody is willing to go through for the promise of a small amount of benefit is very, very variable, and it’s a tough thing to talk about. And most people don’t make a decision based on statistics. They make a decision based on their gut reaction.”

 

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