Atrial fibrillation (AF) is a common and significant concern in multiple myeloma patients, especially around the time of autologous stem cell transplantation (ASCT). Studies show that AF can occur in up to 27% of MM patients after ASCT, often within the first few weeks, and is linked to factors like baseline heart function, kidney health, and hypertension
. While your echocardiogram shows little structural heart disease, AF itself increases the risk of complications during transplantation.
Because ASCT carries a higher risk of cardiovascular events, including AF, many doctors carefully assess heart health before recommending it
. Your history of AF episodes-even if infrequent-may lead your consultant to be cautious, as AF can worsen with the stress of transplant and conditioning treatments, potentially impacting your safety and outcomes
.
That said, decisions about ASCT are individualized. If your AF is well-controlled and your overall cardiac function is good, some centers may still consider transplant with close monitoring and preventive strategies. It’s important to discuss with your hematologist and cardiologist about managing AF risks and whether ASCT can be safely pursued in your case.
Zoledronic acid (Zometa) is mainly used to prevent bone damage and skeletal-related events in myeloma patients. Studies show it doesn’t delay progression to symptomatic myeloma but does reduce bone complications and may slightly improve progression-free survival. While it’s not proven to have a strong anti-myeloma effect alone, it helps protect bones and improve quality of life during the smoldering or asymptomatic phase. It’s common to pause treatment for dental work to reduce the risk of jaw problems. Overall, many patients tolerate it well and benefit from its bone-protective effects.
Travel insurance for smouldering myeloma can be tricky, especially with the risk of needing treatment that might cause trip cancellations. It’s best to discuss your travel plans with your doctor first and allow plenty of time to find specialist insurance that covers pre-existing conditions and cancellation due to treatment changes. Some insurers offer policies with short “stability periods” that might suit your needs. Using a broker who specializes in medical travel insurance can help you compare options and get the right coverage. Checking out resources like the Myeloma UK travel insurance infosheet can also be very helpful.
Starting Zometa with smouldering myeloma can be to help protect your bones and reduce the risk of bone damage. Though SMM is usually watched, sometimes doctors use treatments like Zometa if there’s concern about bone health. It’s great to ask your doctor why it’s recommended for you and what to expect. Many people with SMM do remain stable for years with regular monitoring. Wishing you the best!
It’s understandable to feel frustrated and confused by these symptoms. While fatigue and bone pain can sometimes be linked to myeloma, joint pain and swelling-especially in the ankles, elbows, and neck-aren’t typical for smouldering myeloma, which usually doesn’t cause symptoms until it progresses. Your haematologist’s referral to a rheumatologist is a good next step, as these symptoms could be due to another condition like arthritis or an autoimmune disorder.
Before your rheumatology appointment, consider asking:
What further tests will help identify the cause of my joint pain?
Could I have an autoimmune or inflammatory condition?
What are the treatment options to manage my pain and fatigue?
How might these symptoms affect my daily life and activities?
Bringing a symptom diary can also help. It’s reassuring that your tests for rheumatoid arthritis and tissue disease were normal, but a rheumatologist can look deeper into other possible causes. Wishing you answers and relief soon.
It’s understandable to have concerns about side effects and quality of life with a new T cell therapy, especially after multiple prior treatments. Many patients report that CAR T-cell therapies can cause significant side effects, especially early on-these include fatigue, fever, neurological symptoms, and a risk of infections. Some people experience a temporary dip in quality of life right after treatment, but studies show that for many, quality of life improves significantly in the months following therapy, especially if the treatment is effective. However, about 20% of patients do report ongoing physical or psychological symptoms that can affect daily life.
Real-life experiences vary: some patients achieve long remissions and feel the therapy gave them their life back, while others struggle with lingering side effects like fatigue or memory issues
. Staying in close contact with your medical team and reporting any symptoms early is key, as many side effects can be managed. Wishing you the best as you move forward with this treatment.
You’re definitely not alone in this-sexual difficulties are a very common issue after stem cell transplants, especially after multiple rounds of chemo and treatment. Many men experience erectile dysfunction, reduced libido, or difficulty reaching orgasm, and these problems can persist without treatment. It’s important to know there are various options that might help, from medications like Viagra or Cialis to therapies such as vacuum pumps, injections, or even consulting a sex therapist who specializes in helping couples regain intimacy after cancer treatment.
Opening up about this is a brave and important step, and talking to your healthcare team about your concerns can lead to tailored support. There is hope, and many have found ways to improve their sexual health and relationship despite these challenges. You and your wife deserve to explore these options together with professional guidance.
What you’re feeling is very common after a stem cell transplant-recovery can take much longer than most people expect, sometimes many months or even a year or more, and it’s normal to have both physical and emotional ups and downs during this time. Even if you’re in remission and your treatment is going well, fatigue and feeling “not yourself” can persist, especially while you’re still receiving maintenance therapies like Daratumumab and Zometa.
Many people in your situation struggle with guilt about work and frustration at not bouncing back as quickly as they’d hoped. Please know you’re not alone in this, and it’s okay to acknowledge how hard it is. If you haven’t already, consider talking to your care team about how you’re feeling-they can check for treatable causes of fatigue and may suggest support services, such as counseling or patient support groups, which many find helpful during recover. Be gentle with yourself: recovery is a process, and it’s okay to ask for help or adjust your expectations as you heal.
Hi, Louiseb,given your recent diagnosis and the complexities of your case, it’s understandable you’re looking for others with similar experiences. Based on your results, here’s a breakdown of your situation:
Paraprotein Level: 8 g/L IgG kappa. This indicates the presence of a monoclonal protein, which is a key marker in plasma cell disorders.
Bence Jones Protein: The presence of Bence Jones protein in your urine was a critical finding that led to further investigation.
Kidney Function: You have borderline kidney function, which is concerning and requires careful monitoring.
Anemia: Mild anemia with a hemoglobin level of 115 g/L.
Neutrophil Count: Normal neutrophil count of 1.92.
Myeloma Cells: 30% myeloma cells in your bone marrow.
Bone Lesions: No bone lesions were detected, which is a positive sign.
Kappa Light Chain: Your kappa light chain level is 116, which is slightly above the threshold of 100.
The diagnostic criteria for smoldering multiple myeloma (SMM) typically include a serum M-protein ≥ 3 g/dL and/or 10-60% bone marrow plasma cells without myeloma-defining events (MDE)
. MDEs include CRAB criteria (hypercalcemia, renal insufficiency, anemia, and bone lesions) and certain biomarkers such as >60% plasma cells in bone marrow or a free light chain ratio > 100.
Your case appears complex due to the slightly elevated kappa light chain level, which is influencing the decision to consider high-dose therapy and autologous stem cell transplant (ASCT). The Mayo Clinic’s 2/20/20 criteria also consider factors like serum M-protein > 2 g/dL, and bone marrow plasma cell infiltration > 20% in assessing the risk of progression from SMM to active myeloma.
It’s definitely a good idea to connect with others who have been in a similar situation, particularly regarding the light chain levels and treatment approaches. Online forums and support groups dedicated to myeloma patients can be valuable resources for sharing experiences and gaining insights.
It sounds like you’ve been through a lot since your diagnosis, especially with the initial misdiagnosis and the impact on your kidneys. Rib pain is a common symptom in paraproteinaemia and related conditions, and it’s not unusual for it to be mistaken for cardiac issues, especially when chest discomfort is involved. The presence of high paraprotein (IgG) and Bence Jones protein in the urine can indeed cause significant kidney problems, but it’s encouraging that your paraprotein levels have dropped significantly with DVTd treatment and that your rib pain has improved.
Bortezomib-based regimens like DVTd have shown good results, not only in controlling the underlying disease but also in helping reverse paraprotein-induced kidney injury in some patients, especially when started promptly
. Ongoing close monitoring of your kidney function and paraprotein levels with your medical team is key
. Peripheral neuropathy is a known side effect of some of these medications, so working with your doctors to manage and minimize these symptoms is important.
Keep communicating any new symptoms or concerns to your team, especially regarding your kidney function or nerve symptoms. Wishing you continued improvement with your treatment.
For relief from itchy, red, or blotchy skin, here are some tips that have worked for others:
Apply a cool, damp washcloth to the itchy area for 5-10 minutes.
Take a warm colloidal oatmeal bath, which can soothe irritation.
Use a fragrance-free moisturizer right after bathing and whenever your skin feels dry or itchy.
Try over-the-counter creams with menthol, calamine, or pramoxine for extra relief.
Wear loose-fitting, cotton clothes to avoid further irritation.
Avoid products with fragrances, as these can worsen irritation.
Stay away from extreme temperatures and keep your environment cool and humidified if possible.
Foods like peanuts, wheat, eggs, cow’s milk, soy, shellfish, tomatoes, citrus fruits, and certain spices can sometimes trigger skin irritation in sensitive individuals, so you might consider tracking your diet to see if any foods are linked to your symptoms.
If these steps don’t help or your skin changes (like swelling, rash, or sores), it’s a good idea to see a dermatologist for further advice.
