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 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! 

Dr. Durie sincerely appreciates and reads all comments left here. However, he cannot answer specific medical questions and encourages readers to contact the trained IMF InfoLine staff instead. Specific medical questions posted here will be forwarded to the IMF InfoLine. Questions sent to the InfoLine are answered with input from Dr. Durie and/or other scientific advisors and IMWG members as appropriate, but will not be posted here. To contact the IMF InfoLine, call 800-452-CURE, toll-free in the US and Canada, or send an email to [email protected]. InfoLine hours are 9 am to 4 pm PT. Thank you.


This is the second time you have recommended annual PET/CT as a screening tool. I obtained from the IMF Infoline staff the ASH articles you provided to support that recommendation in the ASH 2015 Review and shared it with my hematologist. He discussed it with his group members. Just days ago my H/O doc and I had a very thoughtful discussion about it. His/Their takeaway is A) There isn't yet enough info to support/justify PET/CT for screening of post-ASCT patients in remission (like me), tho there is for smoldering or non-secretory MM patients, B) Medicare and supplemental insurance companies will not yet cover the cost of the procedure as a screening tool (and surely you acknowledge most of us can't afford to pay out of pocket). c) They look forward to more research to clearly support or guide such a practice and increase the likelihood that Medicare and insurance providers will cover it for their patients. Please respond to these points and explain how you expect patients can obtain PET/CT annual screening. My doctors and I need some practical help if this is so important.

Dear Mary,

I appreciate your comment. First of all, let me say that I am acutely aware of the situation regarding imaging for myeloma. I testified to CMS/Medicare to obtain ANY coverage for myeloma and related diseases. We negotiated for an initial pilot study, the results of which were accepted. However, on more recent review, the number of allowable scans was severely threatened—which we also protested based upon data. The data were accepted, but only one routine follow-up scan was allowed without request from the doctor.

An accepted part of the plan was that doctors had to request further scans, which would not be covered automatically. BUT, upon request, scans are very frequently covered.

Italian data documents the clear role in the post-transplant monitoring (Zamagni et al.: ASH 2014 - and the Journal of Clinical Oncology - A positive scan indicates a different risk category and a need for additional testing and intervention.

Indications for scans are: 1) New disease or recurrence; 2) Low-level disease which is technically “non-secretory”—scans needed for follow-up; 3) Concern about infection or second cancer (SPM). Then a scan is justified and reimbursed.

So, it is the doctor who has to be more assertive on behalf of the patient. This type of request is frequently accepted on the first contact from the doctor, and if not, with a follow-up explanation. The key point is that other, more expensive tests would be required if PET/ CT or other imaging is not done.

A key recent paper is the IMWG updated diagnostic criteria paper - published November 2014 in The Lancet Oncology (first author Dr. Vincent Rajkumar), which documents the central role of imaging. This is also explained in the JCO MRI paper - and editorial - by Dr. Morie Gertz in February 2015.

Hope all this helps and thanks again for your comment,

Brian Durie

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