MD as Myeloma Expert?

Who is a “myeloma expert?” To put this question another way, does the person have to be an MD or medical doctor to qualify as a myeloma expert?”

I am asking these questions because of a recent comment in a Facebook group for a form or pre-cancer called monoclonal gammopathy of undetermined significance or MGUS.

In early 1994 I was diagnosed with a stage of pre-myeloma (single plasmycytoma of bone or SPB) that progressed and I am currently a long-term myeloma survivor.

The post, quoted below, instantly brought to mind several key issues that confront each and every newly diagnosed patient. These issues are personal to my own cancer experience and I had to write a blog post on PBC in order to address the Facebook comment.

“There is a lot of good information on here but please remember unless we have MD after our name we should not be telling others what they have or don’t have or medications/supplements to take. Much of what is said can be overwhelming or confusing and may not be accurate!”

First and foremost, I have to go on record as saying that MD’s or oncologists are central to the journey of all myeloma patients. In fact, numerous studies cite the overall survival benefit when NDMM patients work with M.D.’s that are MM specialists.

Secondly, I have to also say that I think I understand what the Facebook commenter is trying to say. Inaccuracies are posted in myeloma and pre-myeloma Facebook groups. The commenter is trying to shield NDMM patients from inaccurate statements.

However, in my experience, the FB commenter is naive. The FB comment implies two things. First, the post implies that M.D.’s should be the only people who give direction to pre and full myeloma patients and secondly the post implies that M.D.’s don’t make inaccurate statements and should be the only people who talk about medications and nutritional supplementation.

Interactive Health Communication Application- Online communication, interaction
Cure vs. Control- the very real possibility of over treatment-
Conventional vs. non-conventional approach to myeloma

I will try to explain why the post demonstrates naïveté on the part of the commenter.

“There is a lot of good information on here…”

Not only is there a lot of good information on here but, according to the Cochrane study linked below, Interactive Health Communication Applications such as FB groups offer positives for the individual patient.

…please remember unless we have MD after our name we should not be telling others what they have or don’t have or medications/supplements to take.

Pre and full myeloma survivors quickly learn about symptoms and diagnostic testing both of which can identify certain specifics about a newly diagnosed patient’s situation. Many Facebook comments have to do solely with the commenter’s own experience with a given conventional or non-conventional therapy.

Over the years I have found that interactive health communication allows newly diagnosed patients a needed modicum of control over their pre or full cancer diagnosis.

The essay entitled Treatment of Myeloma- the Cure vs. Control Debate was written by a world renown MM specialist from the Mayo Clinic in Rochester, Minn. named Vincent Rajkumar. Dr. Rajkumar explicitly questions the aggressive approach taken by the FDA and oncology prescribing “potentially curative” therapies that increase the risk of short, long-term and late stage side effects even though myeloma is considered to be an incurable cancer.

The essay written by Dr. Rajkumar call into question the entire treatment paradigm of oncology for multiple myeloma. This aggressive approach to treatment is also true for telling patients when to treat. In other words, the cure vs. control debate questions not only how much chemo to prescribe but also when to prescribe chemotherapy.

Lastly, conventional oncologists have little experience with those therapies not researched and approved by the FDA. Nutritional supplementation is a prime example of an evidence-based therapy that is not researched and approved by the FDA. In my experience conventional oncology either dismisses nutritional supplementation outright or gives incorrect direction to the patient.

My point in all this is that while Facebook comments can be misleading and limited/anecdotal, there is much to be gained by the newly-diagnosed patient. Yes, work closely with oncology but also learn as much as you can through the use of non-conventional channels.

Conventional medicine’s relationship with myeloma patient’s is complicated. I have written many posts trying to explain how and why-

Have you been diagnosed with pre-myeloma- SPB, MGUS or SMM? Or have you been diagnosed with full myeloma? Scroll down the page, post a question or comment and I will reply to you ASAP.

Good luck,

David Emerson

MM Survivor
MM Cancer Coach
Director PeopleBeatingCancer

Interactive Health Communication Applications for people with chronic disease

“Interactive Health Communication Applications (IHCAs) are computer‐based, usually web‐based, information packages for patients that combine health information with at least one of social support, decision support, or behaviour change support. These are innovations in health care and their effects on health are uncertain…

Main results-

We identified 24 RCTs involving 3739 participants which were included in the review.

IHCAs had a significant positive effect on

knowledge,
social support and
clinical outcomes.

Results suggest it is more likely than not that IHCAs have a positive effect on self‐efficacy (a person’s belief in their capacity to carry out a specific action). IHCAs had a significant positive effect on continuous behavioural outcomes. Binary behavioural outcomes also showed a positive effect for IHCAs, although this result was not statistically significant. It was not possible to determine the effects of IHCAs on emotional or economic outcomes.

Authors’ conclusions

IHCAs appear to have largely positive effects on users, in that users tend to become more
knowledgeable,
feel better socially supported, and
may have improved behavioural and clinical outcomes compared to non‐users.

There is a need for more high quality studies with large sample sizes to confirm these preliminary findings, to determine the best type and best way to deliver IHCAs, and to establish how IHCAs have their effects for different groups of people with chronic illness…”

Treatment of Myeloma: Cure vs Control

S. Vincent Rajkumar, MD

“Although not often openly acknowledged, “cure vs control” is the dominant philosophical difference behind many of the strategies, trials, and debates related to the management of myeloma. Should we treat patients with myeloma with multidrug, multitransplant combinations with the goal of potentially curing a subset of patients, recognizing that the risk of adverse events and effect on quality of life will be substantial? Or should we address myeloma as a chronic incurable condition with the goal of disease control, using the least toxic regimens, emphasizing a balance between efficacy and quality of life, and reserving more aggressive therapy for later?

Cure vs control is debated because the strategies currently being tested are not truly curative but rather are intended to maximize response rates in the hope that they will translate into an operational cure for a subset of patients…”

Recently Diagnosed or Relapsed? Stop Looking For a Miracle Cure, and Use Evidence-Based Therapies To Enhance Your Treatment and Prolong Your Remission

MD as Myeloma Expert?

Conventional medicine’s relationship with myeloma patient’s is complicated. I have written many posts trying to explain how and why-

Interactive Health Communication Applications for people with chronic disease

Treatment of Myeloma: Cure vs Control

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