Tag Archive for: benefits

Tools for Choosing Myeloma Therapy

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Tools for Choosing Myeloma Therapy from Patient Empowerment Network on Vimeo.

When faced with choosing a myeloma treatment, what should be considered? This animated video reviews factors that impact treatment decisions, provides a list of questions to ask your healthcare team about therapy and advice for engaging in your myeloma care.

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Transcript:

Whether a patient is newly diagnosed with myeloma or is facing a relapse, choosing a treatment approach can feel overwhelming.   

Shared decision-making is a process where patients and healthcare providers communicate and collaborate to make care decisions. This approach encourages patients to take a more active role in their care and treatment and can help them feel more confident when choosing a therapy. 

So, what can impact myeloma treatment decisions? 

  • There are patient-related factors, such as a patient’s age, fitness level, and pre-existing conditions. 
  • And, disease-related factors, including the aggressiveness of the patient’s disease and its location in the body. 
  • And, treatment-related factors, such as past treatments a patient has received or if they are refractory to medicines. 

How can you play a role in making treatment decisions?  

You can start by making a list of questions in advance of your appointment. This can help you to organize your thoughts before you meet with your healthcare team.  

And, when working with your doctor to choose a treatment, consider asking the following questions: 

  • What type of myeloma do I have?  
  • Are there test results that may impact my treatment choices? 
  • What are the risks and benefits of each treatment option? 
  • What approach do you recommend and why?  
  • How is the treatment administered, and what side effects might I expect? 
  • What are my options if this treatment stops working? 
  • Are there newer treatment options available to me, including immunotherapy?  
  • And, is there a clinical trial that might be right for me?  

It’s also a good idea to bring a friend or loved one to your appointment for support to take notes and help you recall information. Afterwards, discuss the appointment together – you can use this time to talk about your care plan and do your own research to learn more about your options.   

The patient portal is another useful tool in your care. You can use it to view lab and test results. And you can use the messaging feature to communicate with your healthcare team when you have more urgent questions to address before your next visit. 

Now that you know more about how to make myeloma treatment decisions, how can you take action? 

  • First, consider a second opinion or a consult with a specialist. 
  • Then, ensure you have had all relevant myeloma testing. 
  • Next, understand and participate in treatment decisions. This includes learning about your options, so you can weigh the pros and cons of each approach. And be sure to speak up and share your personal preferences and goals with your care team. 
  • Communicate regularly with your healthcare team – don’t wait to share information only when you have an appointment.  
  • And finally, bring a friend or loved one to appointments and always write down any questions or concerns in advance. 

Visit powerfulpatients.org/myeloma to learn more about myeloma and access tools for self-advocacy. 

Myeloma Treatment: When Should a Clinical Trial Be Considered?

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Myeloma Treatment: When Should a Clinical Trial Be Considered? from Patient Empowerment Network on Vimeo.

 At what point should a clinical trial be an option for myeloma treatment? Dr. Joshua Richter shares his perspective on the appropriate time to weigh clinical trial participation and the potential benefits.

Dr. Joshua Richter is director of Multiple Myeloma at the Blavatnik Family – Chelsea Medical Center at Mount Sinai. He also serves as Assistant Professor of Medicine in The Tisch Cancer Institute, Division of Hematology and Medical Oncology. Learn more about Dr. Richter, here.

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Transcript:

Katherine:

When should a clinical trial be considered for myeloma treatment?

Dr. Richter:

So, clinical trials are an extremely important component of how we manage myeloma. And I think there are a lot of myths and misconceptions about trials. Trials are not always things to do after everything else failed. From my standpoint, at every point along the way, we should always consider clinical trials, because they offer something really amazing. They offer us access to drugs way before they’re approved.

And the benefit of not waiting until the end, after you’ve been through everything else, is two-fold. One, in order to get on a trial, you need to fit certain criteria, inclusion, and exclusion criteria. You need to have myeloma, but you can’t be so sick from other medical problems that you’re not going to tolerate that treatment well. As such, unfortunately, some patients after they’ve been through all the other therapies may not qualify for a clinical trial, and that can be really upsetting.

The other benefit of doing a clinical trial early on is if you go on a new drug and it doesn’t work, you have all of the other standard of care options available at a moment’s notice. But if it does work and you gain access to a drug way before it’s approved, and it happens to work extremely well in you, you can have an unbelievably long remission and still have all of the drugs that are available. And, potentially, in that time on the drug, new standard of care drugs are approved. It even deepens the well that you can reach into to grab more options. So, at all times along the way, it’s always important to weigh the risks and benefits of what we call standard of care treatment versus clinical trial options.

Qualifying for Disability Benefits with Cancer

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Have you been diagnosed with cancer? If so, you might be eligible for financial aid. If so, the Social Security Administration (SSA) might be able to help. The SSA offers monthly financial resources for people with serious illnesses who are unable to work. While a cancer diagnosis does not automatically qualify, thousands of people with cancer are eligible for assistance.

Medically Qualifying for Disability

The SSA will refer to its own medical guide, known colloquially as the Blue Book, when you apply for disability benefits with cancer. The Blue Book contains details on exactly what medical results you’ll need for cancer to qualify. Cancer has different qualifying criteria depending on your specific diagnosis, so there’s no way to know if you’ll qualify without first consulting the Blue Book. Here are a couple of examples on how to qualify:

Prostate Cancer

Prostate cancer is one of the most commonly diagnosed forms of cancer, but the good news it’s highly treatable. Because of how receptive prostate cancer is to treatment, the criteria for qualification for prostate cancer are challenging to meet.

You will qualify for disability benefits with prostate cancer if your cancer has progressed or returned despite one round of anticancer therapy (usually three months’ hormonal therapy or chemotherapy will qualify), OR

Your cancer has spread to an internal organ, OR you have small-cell prostate cancer

Prostate cancer usually has to be Stage IV to qualify, but again, if your cancer has returned despite treatment you may still qualify at a lower stage.

Esophageal Cancer

Esophageal cancer is typically aggressive and challenging to treat, so you’ll actually qualify for Social Security disability benefits with just a diagnosis. Other forms of cancer that qualify with only a diagnosis include:

  • Acute Leukemia
  • Gallbladder cancer
  • Brain Cancer (malignant, not benign tumors)
  • Inflammatory Breast Cancer
  • Liver Cancer
  • Pancreatic Cancer
  • Salivary and Sinonasal Cancers
  • Thyroid Cancer

The entire Blue Book is available online, so you can review the cancer listings with your oncologist to determine if you’ll meet a listing. Typically, if you can meet any one of the following criteria you’ll qualify:

  1. Your cancer is inoperable or untreatable
  2. Your cancer is Stage IV
  3. Your cancer returned despite treatment

Starting Your Application

Applying for benefits is a tedious process, but fortunately you can complete the entire application from the comfort of your own home. Apply online at the SSA’s website—you can even save your progress to be completed at a later date.

If you’d prefer, you can also apply in person at your closest Social Security office. There are over 1,300 offices located across the country. You can schedule an appointment to apply in person by calling the SSA toll free at 1-800-772-1213.

Once approved, you can spend your monthly benefits on medical bills and upcoming treatments, childcare, housing for your family during treatment, food or utility bills, or any other daily living expenses.

Additional Resource:

Social Security Administration: https://www.ssa.gov

Social Security Disability Evaluation: https://www.ssa.gov/disability/professionals/bluebook/

Qualifying Criteria: https://www.disability-benefits-help.org/resources/medical-evidence

The Blue Book: https://www.ssa.gov/disability/professionals/bluebook/AdultListings.htm

Social Security Disability Application: https://www.ssa.gov/applyfordisability/

Social Security Offices Locator: https://secure.ssa.gov/ICON/main.jsp

Bills Social Security Can Cover: https://www.disability-benefits-help.org/blog/bills-social-security-disability-benefits-cover

This article was provided by Disability Benefits Help (www.disability-benefits-help.org), an independent resource dedicated to helping people across the country receive the disability benefits they need. For more information, feel free to reach out to our team at help@ssd-help.org.