Turning Hope into Reality - HealthTree for Multiple Myeloma

ASH 2020: Turning Hope into Reality - What to Know and What to Do!

Posted: Dec 05, 2020

The American Society of Hematology Annual Meeting is off to a great start! Although the meeting is virtual, the web-based technology is working well, and this year’s meeting will surely serve as an invaluable opportunity for the hematology community to share emerging data and exchange powerful, actionable insights.

My early takeaway is that there are so many reasons for hope for myeloma patients! I would like to propose, however, that hope alone is not enough to improve survival and quality of life. As patients, we should embrace the hope that is justified based on promising scientific breakthroughs, but we must also take personal action to turn hope into the reality of a long and healthy life with myeloma.

Scientific Hope

The rapid evolution of myeloma science is justifiable basis for patients to have increased hope! In the past 17 years there have been significant advances in multiple myeloma management, including 14 newly approved drugs, new diagnostics and supportive care. At ASH, clinical trial data is being presented on exciting new research that will lead to further advances, new insights, new options, and new treatment algorithms.
There are many blog posts on Myeloma Crowd and elsewhere that provide specifics on the exciting science. Keep reading and get inspired!

Ongoing Topics of Debate

While the science has led to advances in accepted standards of care, some topics remain under active debate. At ASH the experts are debating topics including: Treatment strategies for smoldering myeloma, if/when to do a stem cell transplant, 3 or 4 drug induction regimens, optimal agents and duration of maintenance therapy, when to use immune-based therapies, sequencing of available therapies, role of MRD, potential roles of CAR-T and Bispecific Antibodies, and other emerging strategies. Key takeaways from these debates will be presented in articles on Myeloma Crowd and other sites.

Turning Hope into Reality….The Patient’s Role

Become informed

Whether you have smoldering myeloma, are newly diagnosed, in remission or relapse, it is important to stay up to date on the basics, evolving treatment paradigms and specifics of your case.
Watch for breaking news articles from ASH posted here on Myeloma Crowd and for “Best of ASH” sessions designed for patient and caregiver audiences coming soon.
In addition, HealthTree University is a great source for expert opinion on key myeloma topics.
HealthTree is an excellent platform to stay up to date on your specific myeloma profile and treatment strategies over time and can provide information about clinical trials that may be possible for you.

Get a myeloma specialist on your team

Having a myeloma specialist on your team is one of the most essential actions you can take to improve your survival and quality of life.
When you listen to the experts present at ASH, it quickly becomes clear that these scientists are intellectual super-heroes! Despite the complexity and evolving nature of myeloma, their depth of knowledge, scientific enthusiasm and passion for patients is extraordinary!
A recent article from Jenny Ahlstrom summarizes the importance and demonstrated outcomes associated with having a specialist on your team. It is advised to consult a myeloma specialist at initial diagnosis, periodically thereafter and during relapse. As a patient, you are not expected to be a myeloma expert, just know the fundamentals of the disease and your personal case, and benefit from having an ongoing, engaged conversation with the myeloma specialist on your team.
Standards of care in the local community tend to emerge over time. Your myeloma expert may be able to offer insights that are possibly years ahead of the local standard of care. These advanced insights may lead to a personalized plan informed by cutting-edge science with currently approved drugs or clinical trials.
You can find a directory of myeloma specialists in your area here. Telehealth may be an option that provides a safe, convenient access to specialist.

Get actively engaged in the development of your dynamic, comprehensive care plan

Be aware of the emerging science and ask you specialist for their opinion on how these recent developments impact your treatment plan. Consider asking your hematologist/myeloma specialist what their key takeaways were from this year’s ASH meeting. The “right treatment” for your specific case, may lead to improved progression free survival (PFS) and overall survival (OS). As myeloma patients, we are playing a game of “beat the clock” where the winning strategy is to maintain a deep, durable remission for as long as possible to be alive and eligible for optimal new treatment strategies that are on the near-term horizon. We do not have a cure yet, but it will come!
One way the experts learn from each other, teach the myeloma community, and build towards consensus is through the discussion of patient case studies. In a separate article, we will share some examples of case studies that were presented for smoldering, newly diagnosed and relapsed/refractory myeloma. You can see the background on the case and the variety of treatment strategies recommended by top myeloma experts. If the patient profile sounds like you, consider asking your myeloma specialist how these expert insights might be relevant to your current and/or future treatment options.

Stay COVID-19 safe - stay alive

Surveillance data presented at ASH indicates that patients with blood cancers including myeloma have worse outcomes if they contract COVID-19, therefore, it is important that we all stay vigilant!
In a special address to the ASH meeting on Dec 5th, Dr. Fauci reinforced the need for blood cancer patients to get the COVID-19 vaccine as soon as it becomes available. Despite the immunocompromised state of many patients with hematologic diseases, including myeloma, he underscored that it is believed that the COVID-19 vaccine will be safe and effective.
As myeloma patients, we appreciate the additional risk we face from COVID-19 and have worked hard to stay safe over the last nine months. Although we understandably may have quarantine “ fatigue”, and be tempted to drop our guard for holiday celebrations, let’s stay safe and stay healthy so we are here to benefit from the ever improving myeloma treatment options of the future.

Again, the future looks very bright for myeloma patients! To turn hope into reality, as patients we should remain hopeful, educated, and actively engaged with our care team, including myeloma specialists. Cheers and best wishes for your long and happy life!

Todd is a Myeloma Coach and shares support, resources and encouragement with others living with myeloma. You can learn more about the Coaching program, find Todd and other Myeloma Coaches here.