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. Having a myeloma specialist on your team can add years of life, according to several studies from the Mayo Clinic and University of North Carolina. You can always consult with a specialist periodically and get care closer to home. Do NOT leave it up to a local doctor to consult with a myeloma expert for you. Your life is worth the effort.
Before you start treatment, 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 and a local oncologist may not.
With 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.
It’s easier to navigate myeloma if you get help from more experienced myeloma patients. Find a Myeloma Coach who can help you individually navigate all of the resources the Myeloma Crowd and others have to offer. You can pick a Myeloma Coach 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.
We know how tough it is to get a diagnosis that most of us have never heard of before, especially when you are asked to make immediate treatment decisions. It is in your self interest to get educated as quickly as possible because empowered myeloma patients live longer. Rather than the random internet searches you’ve been doing, 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 70 myeloma experts and today we have over 18 courses and 200 lessons (with many more to come). We want you spending 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:
HealthTree 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. Later, you’ll want to see how each treatment is affecting your myeloma in an easy graph you can share for second opinions.
We asked 25 myeloma experts how they would treat different types of myeloma patients, like newly diagnosed standard or high risk. See how an expert would treat you under the Treatment Options section in HealthTree. This section also includes a personalized list of all open clinical trials you would be eligible to join. Review your options in HealthTree, 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, 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.
Add as much information as you can in HealthTree to help myeloma researchers to see anonymous, aggregated patient stories so they can connect the dots on our behalf. HealthTree has personal benefits for you but helps accelerate a cure at the same time.
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