March is Myeloma Action Month, a time to raise awareness for the second most common blood cancer that affects 750,000 people worldwide — and over 2,500 PatientsLikeMe members. One of those members is Marcia (marcia_holman), who was given six months to live when she was diagnosed. Fifteen years later, Marcia sat down with us to talk about her experience, share some advice for newly diagnosed patients and remind everyone that “multiple myeloma made me a patient but it didn’t take away who I already was.” Here’s what she had to say…
You were diagnosed with multiple myeloma in 2001. In your opinion, how has the treatment options and understanding of the condition evolved over the last 15 years?
When I was first diagnosed with stage #3 multiple myeloma, I had 90% myeloma cells. I was very sick with pneumonia, broken ribs from coughing and kidney failure. City of Hope hospital in Duarte, California, treated me aggressively with four major chemo drugs. I was in the hospital the first time for 30 days then out for one week. This went on each month for six months. I was put on Thalidomide and was gradually increased to a maximum dose of 300 mg. I was also taking dexamethasone. At this time this was the only drug that they were treating multiple myeloma with. Since then many more drugs have been released to treat myeloma. Now they are finding that combinations of two or three of these drugs work well. This last year I believe there were four new drugs approved and of course as they do this research they are understanding this disease more. They now realize myeloma isn’t just one disease but several different diseases and treatments vary. What works for one patient may not work for another. What is very exciting for me is the work they are doing with immunotherapy, where they take out your T cells and engineer them in a lab to recognize a certain marker on the myeloma cells. They are then introduced back into the patient where it kills myeloma cells. I am very excited about what is coming in 2016. I believe it will be a great year for multiple myeloma patients and maybe even a cure. I am always hopeful.
You joined PatientsLikeMe back in June 2015, and already have been very active on the site, even rallying other members to take part in our #24DaysOfGiving campaign in December. What keeps you coming back?
When I found the PatientsLikeMe site I was very excited to have a chance to talk with others that are going down this complicated journey with me. I found support and comfort from the myeloma patients. I was able to learn from their experiences and them from mine. I was able to give them hope as I have been a 15-year survivor. They are my myeloma family! I also wanted a way to be useful. I am a registered nurse and not able to work any longer but I long to. I miss caring for people! I feel this has given me an opportunity to give back, pay it forward, for all the support and care I have been given. I feel good when I can help others. That’s who I am! The December #24DaysOfGiving I thought was such a good idea. Anything to help research or help the myeloma community benefits us all. Thank you for the opportunity!
Do you have any advice for newly diagnosed patients?
My advice to a newly diagnosed patient is: 1. Do not panic! Take one day at a time! 2. The best thing you can do is educate yourself. There are several websites, such as, MMRF, IMF, and Myeloma Central that are terrific with firsthand knowledge of the latest in treatments. 3. Talk with your doctors, find out what your options are. Make yourself part of the decision making. Be a team member with your medical team. 4. If you have a faith, pray and ask for prayers. You are in God’s hands! 5. Don’t be afraid to ask for help. It was one of the hardest things I had to learn to do. Just remember your loved ones and friends feel helpless and want to be able to do something so you are being a blessing to them! 6. Connect with others going down this journey with you. You are not alone! You can be a blessing to each other!
What in your life makes you more than your condition?
I am many things! Before I became a patient I was a wife, a mother, a sister, a friend and a registered nurse. After diagnosis I was still a mother of five beautiful children, a sister, a friend, a registered nurse and a grandmother to 11 wonderful grandkids. Multiple myeloma made me a patient but it didn’t take away who I already was. It does not define me! It is an important part of me but I am so much more and wear many other hats! I am a woman and can multitask!
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