Since I started this job as the Myeloma Crowd Community Program Director a year and a half ago, several patients and caregivers have asked me if a non-secretory myeloma community group will be launched in the future. Thankfully, that time has come. After Vicki Jones, a non-secretory myeloma patient and HealthTree Myeloma Coach reached out to me wanting to connect with others like her, I knew that she would be the perfect leader for the group and that the wait was finally over.
Non-secretory myeloma is identified when the myeloma no longer secretes the monoclonal protein in the blood. It is found in 3% of myeloma patients. It is more difficult for myeloma to treat because testing for levels of myeloma and response to treatment requires a bone marrow biopsy every time. It is difficult to study because non-secretory myeloma patients are typically not included in standard myeloma clinical trials because of the challenge in monitoring their disease. Non-secretory myeloma also tends to be more aggressive.
Because of this rarity of non-secretory myeloma, patients with this condition often feel alone or helpless. But by meeting and networking together, non-secretory myeloma patients can provide validation and hope amidst a difficult situation.
That's exactly what happened during our launch on February 10th. People from all over the world, all in different stages of the disease, joined together to hear from one another and share their experiences. We heard from patients living in Europe, Canada, and all over the United States. These patients and caregivers echoed each other, "Finally, a group for us!". We all left the meeting feeling a little less alone.
Apart from validation and connection, another mission of the Non-Secretory Myeloma Patients group will be contributing to research. They want to gather their data informally (and eventually in a formal way) so that doctors and nurses can be better educated about non-secretory myeloma. This can look like answering questions such as:
Because non-secretory myeloma is so rare, minimal research on the diagnosis is conducted. However, if our newly formed Community can pool our experiences and informal data to create hypotheses and even find preliminary outcomes (from personal experiences), we could really make a dent in the non-secretory myeloma research field.
So, if you are a caregiver to someone with non-secretory myeloma or have non-secretory myeloma yourself, please join us on March 8th for our upcoming event. If you are reading this after March 8th, you can still join the Non-Secretory Myeloma Community Chapter and join us next month for our virtual discussion. We can't wait to have you!
Please note that if you are not able to make the event live, you can still register for the event and receive a recording that you can watch after the meeting has concluded.
In closing, here's a note from the Group Leader, Vicki Jones:
I am truly excited that we have found one another and will be learning more about non-secretory Myeloma together. Your experience is so valuable to this group and I hope that the group will, in return, be a source of information, validation, and support for you as well as an opportunity for you to help others.
I venture to say that [this group is] record-setting. I doubt if so many non-secretors have met before. I was looking for others (and getting nowhere) when I turned to HealthTree for help. I am so grateful that they were able to search their database to find all of you!
Please tell your doctors about this group so if they have any other non-secretory patients they can pass the word along. You can also help by letting us know what questions you have and what subjects you would like to discuss. I’m looking forward to some really informative meetings.
about the author
Audrey joined the Myeloma Crowd as the Community Program Director in 2020. While not knowing much about myeloma at the start, she has since worked hard to educate herself, empathize and learn from others' experiences. She loves this job. Audrey is passionate about serving others, loves learning, and enjoys a nice mug of hot chocolate no matter the weather.