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    • Life With Multiple Myeloma
    • Myeloma Crowd Events
    • Dec 10, 2018

    Day 1 of Myeloma Giving: I Don’t Have Melanoma, I Have Multiple Myeloma

Day 1 of Myeloma Giving: Share the gift of accurate information with your friends and family. I don’t have the skin cancer melanoma, I have a blood cancer called multiple myeloma.

From December 10 – 21, the Myeloma Crowd is sharing 12 Days of Myeloma Giving. Please share this post and invite your friends and family to participate. Each day we will share something you can give to lift others. These gifts will save lives, lengthen lives and makes lives happier and more meaningful – maybe even your own.

My son lived in Sweden for two years. Before he left and after he got back people regularly mixed up Sweden and Switzerland. They praised his luck at going to a country with such great chocolate. They raved about the cheeses there and never failed to mention the secretive banking system of the Swiss/Swedish… Swissish(?) people. He didn’t always correct them. The land of moose, meatballs and wooden horses didn’t seem as exciting, so he let it slide.

Pictured: my son in his natural habitat

Every myeloma patient can relate to this on some level. People hear you have myeloma and say “I’m so sorry you have melanoma.” or “Do you think it’s because you spent too much time in the sun as a teenager?” or “I have this thing on my skin. Do you think I should get it checked out?” 

And after a couple times you might feel like Hermione Granger correcting people on the difference.

Or maybe you’re more blunt about it.

But it’s an important distinction. While melanoma is a deadly skin cancer that affects many people worldwide, multiple myeloma is the second most common blood cancer. Over 32,000 people annually are diagnosed with multiple myeloma and there are over 100,000 living multiple myeloma patients in the United States. 

Myeloma is a blood cancer that affects your bones. You can help people understand new information about your condition by associating it with what they already know. For example, I always tell people “It’s in the same family as leukemia or lymphoma.” Or associate it with someone they know. “This is the same cancer that Tom Brokaw has and the founder of Walmart (Sam Walton) died of.”

Multiple myeloma is on track to become the most common blood cancer in the United States as the population gets older, but lives longer. It may be important for people to know the signs for themselves. 

Common symptoms of older age like fatigue or back pain could actually be multiple myeloma. Learn more about myeloma Signs and Symptoms here. It’s so key to understand the symptoms because early diagnosis can mean much longer life. Today, half of all myeloma patients will die within 5 years of diagnosis, but if patients are diagnosed early and see an expert, they can live double that time or more. Learn more about what affects myeloma life expectancy here. 

By sharing this article, you can help educate family practice doctors who aren’t typically looking for myeloma in their practice. They call rare diseases “zebras” in a herd of horses. Even doctors who ARE myeloma patients can miss their own diagnosis, thinking symptoms will resolve on their own.

You can share a link to the Myeloma Crowd website for accurate and current news and information about how to live well with myeloma and how the science is advancing towards a cure in so many ways. 

Or you can invite friends or family members who have myeloma to check out a new tool for myeloma patients called HealthTree, where patients can find personally relevant treatment options, clinical trials and see others in their same situation. Our goal in creating this tool is to help identify patterns in care that could lengthen life and potentially cure patients. It’s such an important tool that a viral Facebook video on the tool has now been seen over 3.3 million times

So keep sharing the message that multiple myeloma and melanoma are two different cancers. You’ll be giving a great gift to patients, family, neighbors and friends who may help patients get an earlier diagnosis and live longer. 

And if they mess it up again, maybe send them a sassy “let me google that for you” link the next time they ask about it.

 

 

About Author

Jenny A

Myeloma survivor, patient advocate, wife, mom of 6. Believer that patients can help accelerate a cure by weighing in and participating in clinical trials. Founder of Myeloma Crowd, Myeloma Crowd Radio and the CrowdCare Foundation.

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