Charlotte Pineda

multiple myeloma coach since 2024

You are unique and so is your myeloma experience. While we have much to learn from each other; ultimately, only you can decide what’s best for you. As a Certified Professional Coach, I see myself as a partner who helps others create clarity and move forward as courageous self-advocates who make the best decisions for themselves. My vision is for each of us living with myeloma to live life to the fullest and on our own terms! In March 2023 I was hit with the news: “You have high-risk smoldering myeloma…It will likely progress to multiple myeloma within two years." Less than a year later, I learned that I had multiple myeloma. I started induction therapy which included Velcade (bortezomib), Darzalex (daratumumab), Revlimid (lenalidomide), and dexamethasone. Due to side effects, dexamethasone was reduced and then eliminated. Gratefully, I'm responding well to treatment at this time. To borrow a popular business term: myeloma means a life filled with volatility, uncertainty, complexity, and ambiguity (VUCA). Early on, I decided not just to survive–but to thrive. I take one day at a time and credit consistent meditation and exercise for helping me through each day. In addition to being a coach, I’m a meditation and breathwork teacher. I get so much satisfaction from helping others incorporate meditation and breathwork into their lives. I don’t attempt to force myself or others to “just be positive.” Instead, I focus on hope and optimism and work hard not to beat myself up for having bad days–and sometimes weeks. It’s all about resilience. As psychologist and TED speaker, Susan David said, “Hope and optimism are different from (false) positivity. They are future-oriented and earned by a willingness to work hard and problem-solve to create a better outcome…Your feelings are valid, important, and worthy of honoring with compassion, but they are not facts or directives that get to boss you around. You can show up to them with compassion, courage, and curiosity, and then make your own choices about how you move forward.” This is where hearing the stories of others on HealthTree Foundation has helped me, and I’m honored to give back and help others as a coach. It’s not easy; but with courage, hope, and optimism, I believe we can thrive! When I’m not coaching, you'll find me spending time with family, playing with my Jack Russell Terrier, meditating, practicing yoga, learning something new, or relaxing with a good book. I look forward to speaking with you!

Laurie C

multiple myeloma coach since 2023

I am a 60 year old female who was diagnosed with high risk [t(4,14)] IgG Lambda light chain Multiple Myeloma on Nov 1, 2021 after a tumor in my spine cracked my T4. I had 4 cycles of KRd, then an autologous stem cell transplant mid June 2022. I resumed treatment September '22: on Revlimid 10 mg daily and Velcade 100 mg 2 x per month. I am just changing to Revlimid 5 mg + Velcade 2x monthly due to bad headaches and blurry vision. I also got shots of Xgeva once every 3 months for bone strength, this is now being changed to every month. I can talk to people about life hacks for a successful autologous stem cell transplant. I can talk about what I've read about high risk MM. I can talk about the importance of managing your bone strengthener properly and what happens if your doctor forget a dose. I read all of the Myeloma Research that I can find. I am still working. I would like to bring kindness and support to the lives of those diagnosed with Myeloma. WAYS I CAN BE HELPFUL: tips on having a great bone marrow transplant; how to prepare questions to discuss with your doctor, how to help yourself heal through diet, music, exercise, reading and love. Understanding blood test changes. I can support patients in English and in French. I read alot about new CAR T therapies and related clinical trials for my work. Please write me! My email is HEALINGMYELOMA@GMAIL.com I AM NOT THE BEST RESOURCE FOR: discussing issues related to end of life, grief management, palliative care, prognosis, etc. I am not knowledgeable about anything related to insurance issues and or the health insurance appeal process. healingmyeloma@gmail.com IS MY EMAIL healingmyeloma.blogspot.com IS MY BLOG I love coaching, so please email me HEALINGMYELOMA@gmail.com Wishing you peace and love.

Mary Sage

multiple myeloma coach since 2020

Let's Chat! One time or more, I am here for you at whatever level needed. I enjoy texting and email and if desired a phone call or we can set up a FaceTime call. Mary Sage lives with her husband Michael who is her primary caregiver and is also himself a coach, her adult son Raymond, who is a secondary caregiver in the home, and 2 dogs, Stella and Jake. She lives in the Pacific Northwest region on an island accessible only by a ferry. She was diagnosed with Stage 2 IgG Lambda in November 2015 and placed on immediate disability due to spinal fractures, severe pain, and limited mobility. Like many others, prior to diagnosis, she experienced years of bizarre blood results and chronic back pain that was becoming increasingly debilitating. Mary had a stem cell harvest in 2016 and a stem cell transplant in 2019 and received 2 years of a strong response until her second relapse. In the past year she has become non-secretory, so her team uses new pain levels or increased pain levels to indicate tests that need to be run. PET scan and BMB are the primary tests used to track changes to her MM. Mary has been on 5 different protocols and treatments, has become refractory to 2 treatments and her record for using any one protocol seems to be 2 years then a change is investigated. Currently, her bloodwork shows standard risk MM; her MRD is positive with 5 parts per million. Her present maintenance treatment is Pomalyst (May, 2022). After 1 year on KPd, Mary's MM markers are now in range and she is able to say she is in a clinical remission - this is her year to move about more freely (although still cautiously) and enjoy a few more activities not afforded when her blood work showed progression. Mary is also trained in Hospice and grief support (since 2004). Mary welcomes any who might need Hospice Support for their journey or their loved ones. This work is done remotely and can include FaceTime or phone calls or any other modality as needed/desired. It is an honor to walk this journey with you during this challenging time.