As we continue to fight for the development of and access to new and better drugs, increasing numbers of myeloma patients are already living longer—certainly beyond 5 years, and often beyond 10 to 15 years. That’s certainly great news! But long-living myeloma patients need specialized care plans. Here’s a checklist to help those patients stay alert to red flags which call for special attention:

A key first step for patients is to review any ongoing maintenance and/or supportive care measures:  Is maintenance needed and/or helping? Are there any downsides?  Has there been any impact on blood counts, neuropathy or bones?  An initial option is dose reductions, if needed. 

Watch for progressive reductions in white blood cell counts, hemoglobin (anemia) and/or platelets, which can lead to problems.  Reduced levels of neutrophils (white blood cells) are a particular concern because of increased susceptibility to infections. This deserves discussion with your doctor, especially if infections have become a problem or if there have been episodes of fever, or if low-level/opportunistic infection is suspected. 

Hidden infection in sinuses, teeth, kidney or bladder areas can go unnoticed. Don’t hesitate to have any recommended evaluation or testing.  Blood testing can show antibody levels to things like Lyme disease or toxoplasmosis (a parasite infection).  PET/CT scanning can reveal small areas of infection in sinuses or soft tissue areas, which may require attention.

Ongoing use of steroids, such as dexamethasone, can be helpful but harmful with long-term use.  I strongly recommend a frank discussion with your doctor about when to stop steroids.

Blood-sugar levels can increase and then turn into full-blown diabetes.  Cataracts can develop requiring surgery.  Loss of elasticity in skin and soft tissues leads to easy bruising.  There is also an increased risk of infection. 

A rare but sometimes serious problem is hip damage called AVN (avascular necrosis of the head of the hip bone), which can lead to arthritis, pain, and limitation of movement.  Replacement surgery can be required. 

These and other potential problems are sufficiently important to required detailed discussions with your doctor.  Are steroids still required?  Can the dosage or frequency be reduced?  Can they ultimately be stopped?

Well-known issues for myeloma patients include development or progression of neuropathy, requiring dose reductions or discontinuation of Velcade or any other triggering drug.  Use of bisphosphonates should not be open-ended.  Both Aredia and Zometa can lead to longer-term problems, including osteonecrosis of the jaw (ONJ) or even atypical fracture of the femur (upper leg bone). Therefore, reducing the frequency and/or duration of bisphosphonates is recommended.

Important Patient-Doctor Discussions

Beyond all this is the good news that you are living longer.  However, always be alert to possible health issues that can affect us as we age—whether myeloma patient or not. Heart or lung disease, hormone or metabolic problems, even a second cancer can sometimes occur. To stay ahead of potential problems, I strongly recommend regular monitoring and follow up by an internist or general practitioner, as well as any specialists whom you may have seen in the past. 

What should you be looking for to stay healthy? Watch for diabetes, high blood pressure, heart disease, low hormone or vitamin levels (thyroid hormone vitamins D or B12 for example) or early second cancer.  All of these are possible—but, thankfully, unlikely, except low vitamin D levels, which are actually quite common and should be treated with daily supplements.

Normal monitoring is recommended, including colonoscopy.  I particularly recommend whole body PET/CT (approximately annually if feasible) for monitoring.  This is an excellent way to monitor low-level myeloma and can also detect hidden infection or an early second cancer.  My personal experience is that colon or breast cancer detected early can be dealt with in a curative fashion.

So, I’ve given you a lot to think about. Although this is not a comprehensive list, it is hopefully sufficient to set you on the right path. Take time to discuss ongoing therapies with your doctor and strongly consider working with an internist to monitor your general health. 

With longer remissions, you want to be in the best shape for the longer term and incorporate the best diet and exercise programs. Stay tuned for any new tips or suggestions! 

Image of Dr. Brian G.M. DurieDr. Brian G.M. Durie serves as Chairman of the International Myeloma Foundation and serves on its Scientific Advisory Board. Additionally, he is Chairman of the IMF's International Myeloma Working Group, a consortium of nearly 200 myeloma experts from around the world. Dr. Durie also leads the IMF’s Black Swan Research Initiative®.

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