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IMF NLB experts share insights on early myeloma detection, treatment, and support. 

 

As part of the International Myeloma Foundation’s efforts on raising awareness for multiple myeloma during Blood Cancer Awareness Month last September, members of the IMF Nurse Leadership Board (NLB), Beth Faiman PhD, RN, MSN, APRN-BC, AOCN® (Cleveland Clinic Taussig Cancer Institute —Cleveland, OH); Donna Catamero, ANP-BC, OCN, CCRC (Icahn School of Medicine, The Mount Sinai Health System—New York, NY); and Tiffany Richards PhD, ANP-BC, AOCNP® (MD Anderson Cancer Center, University of Texas—Houston, TX) engaged with the myeloma community on Wednesday, September 18 via a Facebook Live Q&A, to answer questions about myeloma and nursing care. 

Here are some of the top takeaways from the Facebook Live Q&A. We have gathered some of the top questions and answers from this informative and insightful Facebook LIVE session.(EDITOR’S NOTE: Questions and answers have been summarized for conciseness and clarity.)
 

1. What is very important about immunotherapy that patients need to know? 

Patients on BCMA-targeting bispecific treatments should prioritize vaccination and infection prevention, especially during flu season, as these treatments can increase susceptibility to infections. 

 

2. What do you need to know about MGUS? Are there symptoms to watch out for? 

Many patients have had their free light chains assessed using outdated test ranges, which may not accurately reflect normal levels, especially in those with kidney disease. It's important for patients to understand this when interpreting their lab values. 

For patients with MGUS, factors like age and kidney function are considered during monitoring, as MGUS can potentially impact nerves or lead to amyloidosis. There is a relationship between amyloidosis and multiple myeloma, and they can influence each other. 

Treatment approaches for both amyloidosis and myeloma are similar, focusing on monitoring free light chains and managing symptoms, which also tends to be alike for both conditions. 

 

3. Should a patient on KCd (carfilzomib, cyclophosphamide, and dexamethasone) still be getting flu and COVID-19 shots? 

Patients on KCd (carfilzomib, cyclophosphamide, and dexamethasone) should definitely get flu and COVID-19 vaccinations. The caveat is that if you are on a steroid, it would be best to look at the timing of when you’re taking the steroid vs when you’re getting vaccinated. If there is a need to delay treatment for a few days to make room for vaccinations, that should be the highest priority. 

 

4. What if the patient is on daratumumab (which is an antibody)? Does that affect when to get vaccinated? 

If a patient's disease is stable and they are in maintenance, daratumumab can be delayed to allow a vaccine response. However, if a patient is experiencing aggressive relapse and getting daratumumab is necessary, the disease needs to be put under control first. It’s a matter of risk vs benefit and trying to weigh them to make the best decision. 

 

5. If a patient has unusual symptoms, should they tell their provider? 

Patients should always report unusual symptoms to their providers, as seemingly minor issues could indicate a myeloma diagnosis. Early communication is crucial. 

 

6. How much should patients share with their nurse and doctor when it comes to side effects?  

Patients should share all side effects with their healthcare team, as this information is vital for effective care. Telehealth can facilitate timely discussions about symptoms. 

 

7. What are some of the newer therapies that you are excited about? 

Clinical trials such as IMROZ (isatuximab) and PERSEUS (daratumumab) are promising for newly diagnosed myeloma patients, emphasizing the benefit of four-drug induction therapies in achieving deeper remissions that will, hopefully, translate to overall survival. 

 

8. What are your thoughts about personalizing treatment? Should it be four drugs vs three drugs for newly diagnosed myeloma? 

Treatment should be tailored based on patient fitness and other medical conditions. Frail patients may be better suited for three-drug regimens, while fit patients can handle four-drug combinations. However, if a patient is frail due to myeloma, then maybe going forward with a four-drug regimen is more appropriate. 

 

9. What are some of the things that you’re excited about when it comes to newly diagnosed myeloma or first relapse?   

There is excitement around upfront CAR T-cell therapies and adapting four-drug regimens to patient needs. Clinical trials are currently ongoing for both transplant-eligible and transplant ineligible patient populations, and that covers the newly diagnosed. 

Most patients can be offered personalized four-drug regimens for treatment. These combinations can be adjusted based on individual needs, such as lowering the dose or modifying the treatment schedule. This approach allows patients to still benefit from a four-drug regimen while tailoring it to their response and tolerance. 

Ongoing research is exploring lighter regimens for quads and novel therapies for early relapses. 

 

10. Are four-drug regimens more toxic? Do they have more side effects?  

Four-drug regimens are not necessarily more toxic or associated with more side effects. Studies suggest they can achieve better MRD negativity without increasing toxicity, and they may be more effective than three-drug regimens in certain populations. 
 
In some studies, conducted among frail groups, three drugs are being stopped because they are not working as well. While data still needs to factually prove it, it seems that four-drug regimens are more effective than three-drug ones. 

 

11. What do you tell your patients to look at if you're going in remission? What kind of monitoring or recommendations should one expect (e.g., blood tests) and how often do patients need to be seen? 

Patients are usually seen every one to two months for maintenance therapy, depending on whether they are high risk. Whole body imaging is done annually, with PET scans strongly recommended vs MDM. Bone marrow biopsies may occur once a year depending on MRD (minimal residual disease) status. 

 

12. Is there anything different than what you might do in your institution with the monitoring? 

Monitoring is typically reevaluated annually, including imaging like PET scans and bone marrow biopsies. High-risk patients are monitored more closely.  
 
If a patient is responding very well and has sustained MRD negativity, we might dial back their maintenance therapy. Patients might be able to afford a break in therapy at this point.  


13. How do you know if you've progressed from MGUS to myeloma? 

The International Myeloma Working Group uses the SLiM CRAB criteria for diagnosing multiple myeloma. SLiM includes: 

  • S: Serum-free light chain ratio (lambda or a difference >100) 
  • L: 60% or greater plasma cells in a bone marrow biopsy 
  • M: MRI showing more than one lesion over 5 mm 

CRAB includes: 

  • C: High calcium (hypercalcemia) 
  • R: Renal insufficiency (elevated creatinine) 
  • A: Anemia (low hemoglobin not due to other causes) 
  • B: Bone damage 

If SLiM criteria are met, early treatment is recommended to prevent progression to CRAB criteria. Monitoring light chain levels is crucial, and any new symptoms like fatigue or bone pain should prompt a discussion with healthcare providers. Patients with low-risk MGUS should continue regular monitoring and communication with their primary care team. 

 

14. Is Revlimid enough for double hit high-risk MRD myeloma? 

At our center for high-risk multiple myeloma, we typically use a combination of a proteasome inhibitor and an IMiD, rather than just Revlimid. 
 

15. Is it normal to have so much pain on Revlimid while in remission? 

Pain in patients on Revlimid is usually not caused by the medication itself but may be from pre-existing neuropathy or myeloma-related pain. Many centers have pain management specialists who can help, especially for nerve-related pain.  
 
Medications like gabapentin or pregabalin can be effective for neuropathy. While Revlimid is not typically associated with causing pain, patients should discuss any symptoms with their doctor for proper management. 
 

16. How do I know if I have neuropathy, as I'm supposed to be tingling and numb in my fingers and toes? 

Neuropathy can stem from various causes, including diabetes and vitamin deficiencies. It's essential to rule out other causes and address the underlying issues. 
 
Neuropathy in myeloma patients can be caused by the disease itself or by the treatments used. While there isn't a single pill that can eliminate neuropathy, we focus on supportive care and interventions to help minimize its impact. It's essential to identify the cause and to determine the best management strategies available to support patients. 
 

17. What is the preferred imaging for monitoring? 

PET scans are generally preferred for routine tests, but whole-body MRIs are also used. Institutional policies and insurance can influence these choices. 
 

18. Can you comment on the MRD blood test instead of bone marrow biopsy, mass spectrometry, or EZM? 

Currently, MRD testing is primarily done through bone marrow biopsies, with blood tests not yet widely available for this purpose. 

 

19. My husband's blood studies have pointed to myeloma, but everything looks great and it's so frustrating. What do we absolutely have to do to accurately diagnose this? 

It sounds incredibly challenging to deal with repeated tests like bone marrow biopsies and PET scans without a clear diagnosis, especially when blood results suggest myeloma. Having an open dialogue with your care team is essential. 

You might consider discussing the following points with your care team: 

  1. Ask them to explain why they believe this isn’t myeloma despite the blood findings. 
  2. Inquire about any additional tests that could help clarify the situation, such as specific imaging or molecular studies. 
  3. Discuss how long it might take to get results and when to follow up. 
  4. Explore other potential diagnoses or conditions that could mimic myeloma symptoms. 
  5. Express the emotional toll this uncertainty is having and ask about resources for support. 

Being proactive and prepared with questions can help ensure you get the information and support you need. 

 

20. Can you comment on masking? What are the current recommendations? 

Patients are encouraged to wear masks, especially in public settings, to reduce infection risk, considering local COVID-19 and flu case numbers. 
 

To view the full IMF NLB Facebook LIVE Q&A session, watch the video here. 


 
 
 

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