“MMRF Summit

As a nurse, nurse educator and patient advocate, I don’t just preach and teach patient empowerment, I live it every day. On October 14, 2017, I had the privilege of attending the Multiple Myeloma Research Foundation (MMRF) Summit held in Charlotte, NC, along with about 250+ patients and care partners. I asked myself why they would all show up at 8 AM on a Saturday morning to participate in a day-long conference?

Perhaps they heard about the six medical experts who were going to share their expertise on where we’ve been, where we are, and where we’re heading in the treatment of multiple myeloma (MM)? Perhaps they were hungry for the delicious and nutritious breakfast and lunch meals that were offered as part of the free summit.  Perhaps they showed up with hope and optimism seeking to find out if they can plan for a tomorrow. After all, aren’t positivity, hope and optimism key factors when it comes to surviving any life-threatening or chronic illness?

When I was a young nurse in the ‘70s, myeloma was a terminal illness. There were no treatments other than pain management. Palliative and hospice care were also in their early infancy. The MMRF Summit provided an open forum for the exciting advances currently being made in the field. Lots of research is on the cutting edge of the advancements, although there’s not enough researchers or funding to bring an end to the dreaded disease quite yet. The research being done however, brings life back into the fight. In the last six years, ten new and effective drugs have been approved by the FDA (Federal Drug Administration). Several clinical trials are available that offer the possibility of newer, more effective treatments…bringing us closer and closer to a higher remission and survival rate…and perhaps, one day soon, a cure.

A lot of technical and drug-related information was presented at the summit in a myriad of PowerPoint presentations. Some, probably too technical for the average attendee.  Precision medicine was addressed with critical emphasis on genomic testing of the patients’ genes to scientifically identify the best cancer treatment modality for their genetic cellular make-up.  Discussion of Precision Medicine and the advancement of immunotherapies related to myeloma gave way too much excitement about the future treatment of the disease.  Advances in stem cell transplants have also brought much hope to patients and have definitely increased remission rates.

The message of the day was one of great optimism and hope. With a current remission rate of 70 percent, attendees were encouraged to have the conversations about the newest drugs, therapies and clinical trials with their own personal doctors. Patient empowerment was a common thread throughout the summit as patients were encouraged to assume a larger role partnering with their healthcare team to be more involved with decision-making and the practice of self-advocacy.

As we all know, cancer is a devastating disease. It is not only devastating to the patient...but it devastates everyone who cares about the patient. Once you have been diagnosed with cancer, your life is never the same. Every ache, every pain, every bump and every lump makes you worry that your cancer is back. Regardless of what type of cancer you are diagnosed with, all persons with cancer share the same anxieties and fears. Everyone wants to be treated with the best treatment available. Everyone wants to live.

“MMRF

When you are diagnosed with cancer, you put your fate into the hands of the cancer specialists. They will determine the best form of medical treatment for your cancer which will either include surgery, chemotherapy (drug therapy), radiation therapy, and more recently immunotherapy. You may be treated with one or a combination of these treatment modalities.

While you must have faith in your doctors, you can also make sure that you are informed about the type of cancer you have. Ask questions. Ask lots of questions. Ask for clarification when you don’t understand the answers. Ask how to spell the terminology your doctors use. Write down your questions before you visit the doctor so you don’t forget to ask them. Write down the answers if you feel you need to. Bring an advocate with you to every appointment. When you are stressed out it is oftentimes hard to concentrate or recall conversations. You may also not ask the important questions. Your advocate will help remind you of the discussion and ask the questions that need to be asked. It is helpful to have the same advocate with you for each doctor visit so they will be familiar with your illness and the prescribed treatment.

Seek out a second opinion if you feel compelled to do so. Patients do this all the time and it will not jeopardize your relationship with the primary doctor. Most insurance companies will gladly pay for a second opinion. You will feel more in control of the situation if you get the 2nd opinion, and it will also give you a sense of security assuming that both doctors agree on the diagnosis and treatment modality.  You can become confused if you get two different opinions from two (or more) different doctors. At that point, you may want to do some research on your own to determine the best course of action to take.  While you may be compelled to crisscross the globe going from doctor to doctor for a cure, this is not to your advantage. It will be too exhausting, too expensive and too emotionally draining. At some point, you will have to put your trust in one doctor 

Be sure to let loved ones and friends support you in this journey. They can help you physically, emotionally and spiritually. Do not shut them out. You will need them now more than ever. Don’t be ashamed to ask for help. Tell people what you need and how they can help you. You cannot do this on your own.

Lorrie KlemonsIn summary, the take-aways from the MMRF Summit, include:

  1.      Patients should discuss genomic testing, stem cell transplant, precision medicine and immunotherapy, and clinical trials with their own doctor.
  2.      Patients should have two sets of stem cells harvested and frozen for future stem cell transplant (SCT)
  3.      Patients should be on a minimum 3-drug treatment protocol
  4.      If eligible, patients should have a stem cell transplant after drug therapy remission.
  5.      Patients should get a second opinion from a major cancer center
  6.      Patients should research clinical trials at www.clinicaltrials.gov
  7.      Patients/care partners should be empowered to partner with the healthcare team so they can be part of the decision-making process

There are many places where cancer patients can go for information, resources and assistance.  Some of these include: 

  •        The American Cancer Society at 1-800-227-2345. www.cancer.org
  •        Cancer Care @ 1-800 -813-HOPE (4673).
  •        Cancer Information Service @ 1-800-4-CANCER (226237) 
  •        PatientPower.info - providing education and support to those with blood-related cancers
  •        PatientAction.com - providing advocacy and empowerment to health care consumers 

 

Reporting for Patient Power,

Lorrie Klemons, RN, MSN
Co-founder, Patient Action
Patient Advocate/Coach/Educator/Speaker/Author

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.