If you've recently been diagnosed with multiple myeloma, we're sorry that you're in a club that none of us wanted to join. The good news is that you will meet the kindest people in the myeloma community and the Myeloma Crowd is here for you!
Here are six steps to reduce your anxiety and take meaningful action:
If you do only one thing for your care, it will be to find and consult with a myeloma specialist. According to several studies from the Mayo Clinic and the University of North Carolina, having a myeloma specialist on your team can add quality years to your life. You can always consult with a specialist periodically and get care closer to home, as your local oncologist and multiple myeloma specialist coordinate together to give you the best care. Do not leave your sole care in the hands of a local doctor. Your life is worth the effort.
Before you start treatment, you should make sure your doctor performs the right tests. This includes blood tests, urine tests, imaging (PET/CT, MRI, etc) tests, and a bone marrow biopsy test (not fun, but informative.) Myeloma experts will run the right tests while a local oncologist may not. You can start now to become an educated and empowered patient that knows the right kind of tests, labs, and care you should be receiving.
With the results of these tests, you will understand the type of myeloma you have. Not all myeloma is genetically the same. There can be standard or high-risk types of myeloma. The genetic tests (via a bone marrow biopsy) must be run before you get treatment, otherwise, there are no myeloma cells to test. Treatment does differ between standard and high-risk myeloma. You are fighting a war and you want to understand your enemy.
No one should have to go through their myeloma journey alone. Receiving help from a more experienced myeloma patient can reduce your anxiety, help navigate different myeloma treatments and resources, and provide an emotional connection with someone who is going through a similar experience. A Myeloma Coach can be chosen by interest area, geographic area, or type of myeloma. You can have one or more Myeloma Coaches and the relationship can be short or long-term. You can also sign up as a Myeloma Coach if you are interested in sharing your experience as a mentor. This program has positively impacted hundreds of myeloma patients on both the giving and receiving end of the program.
HealthTree Cure Hub provides a suite of tools to help you stay ahead of your myeloma.
You’ll start getting an overwhelming number of labs run and you’ll want to start tracking your myeloma markers. Keep everything in a single place, like your genetic reports, myeloma markers, and other critical information so you can graph your disease. You’ll also be able to access an easy graph showing how each treatment affects your myeloma that you can share for second opinions.
See how an expert would treat you under the Treatment Options section in HealthTree Cure Hub. After entering your data and completing your profile, you can access a personalized, generated list of treatment options, options that come from 25 different myeloma experts with whom we consulted about different treatments for various types of myeloma. There is also a personalized list of all open clinical trials you would be eligible to join in this section. Review your treatment options in HealthTree Cure Hub, print them out, and take them with you to your appointments to have an informed conversation with your doctor to better understand why he/she is suggesting a particular course of therapy.
In HealthTree Cure Hub, our Twin Machine technology lets you see what other patients like you have received for care, based on their type of myeloma. Look ahead and find your twins who are years ahead of you in treatment. Who had the longest remissions? Take notes of their treatments and discuss them with your doctor.
See real-world data of how people are living with their side effects and what they are doing to try and ease them. You can also share your experiences with other patients and vote on solutions that have been successful for you in combating your side effects. By sharing our experiences, we can help each other have a better quality of life.
Add as much information as you can or upload your electronic health records to HealthTree Cure Hub to help myeloma researchers connect the dots through anonymized patient stories. There are also surveys and studies that you can participate in by multiple myeloma specialists from around the world. These simple, yet innovative surveys and
Chances are before being diagnosed with multiple myeloma, you had never heard of the disease before. It's overwhelming to receive that diagnosis and then be immediately thrown into making treatment decisions.
It is in your self-interest to get educated as quickly as possible because empowered myeloma patients live longer. Rather than consult Dr. Google, join HealthTree University. We’ve built a comprehensive curriculum in HealthTree University to make getting up-to-speed on myeloma easy. Start with the Myeloma Basics classes and work your way up. The classes are taught by over 95 myeloma experts and today we have over 355 lectures in 24 courses (with more to come!). We want you to spend your precious clinic time asking your doctor questions about your care, not myeloma basics.
A series of videos especially for newly diagnosed myeloma patients can be found here:
The Myeloma Crowd Community program consists of the Myeloma Crowd Radio Program, Myeloma Crowd RoundTables, Myeloma Crowd Community Events, and Myeloma Crowd News (articles we share on the website and weekly newsletter). Here are some actions steps you can take to get involved in this amazing Community:
And as always, reach out to us at firstname.lastname@example.org if you need more help. We’re here for you!
Jenny Ahlstrom, Myeloma Crowd and HealthTree Founder