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Find a community of multiple myeloma patients who care and are just like you

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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.

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Derek Johnson

multiple myeloma coach since 2023

I was diagnosed in 2019 at 34 years old, on my grandmother’s birthday. Though, symptoms were compounding for over 9 months. I had some cough and congestion that held-on for 1 1/2 months. Then I had extreme eczema on my hands which made it apparent my immune system was starting to go haywire. Finally, leading-up to diagnosis was extreme back pain and 1/2 hour long back spasms. Hindsight is 20/20. Obviously, I shouldn’t have gone 10 years without a blood test. With that in-mind, perhaps my Myeloma could have been caught sooner instead of 90% Myeloma concentration found at the ER with a subsequent 2 1/2 week hospital stay due to uncontrollable pain. Now, I advocate for anyone with odd symptoms to schedule a blood test as it could save their life! Though, it’s funny looking-back as my pup had regular blood tests… we’re educated that’s the best way to catch major health issues for our furry friends, right? My introduction to Myeloma and cancer was not gentle. I was kicked-into the fire pit. But thanks to close family support, my pup, and fortunately an A+ oncology team I’ve made it out the other side. As I was getting past the emergency phase and into the maintenance phase there were some real shockers. I learned that I was outside the normal age-range for this cancer. I learned nearly 6months after diagnosis that there is no cure. Thus, I’d be on cancer meds for the rest of my life. Finally, why would I need a stem cell transplant? I had a successful stem cell transplant experience in July of 2020. I’ll admit it was a rough ride, but the hospital food was beyond excellent and made it that much better. Having Cancer sucks. There’s no other way to put it. No one wants to receive news they or a loved one has cancer. Though, thanks to modern medicine, Multiple Myeloma can for the most part be kept under control and maintained. Sure, there may be some physical limitations due to cancerous effects on the body and/or side effects from medications. But thanks to new cancer medications, one can still live a life worth living with some alterations. Don’t allow this cancer to get the best of you…

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Melissa Rosenbauer

multiple myeloma coach since 2023

HOLA! I am Melissa Rosenbauer, an American living in Spain with my German husband, Thomas Bossert, who has multiple myeloma. Together, we have made it through the toughest year of our lives when Thomas (55) was diagnosed with MM in February 2022. But now we are on the other side and I am excited to help guide YOU through all that we've learned so you too can get to the other side of this. As a caretaker, I can speak to some specific areas of MM: - navigating care outside the US (specifically in the Spanish public system) - kidney failure and dialysis (Thomas was on dialysis for 4 months at diagnosis) - quad induction therapy (VRD plus Daratumamab) - strange side effects like hiccups - stem cell transplant - how to seek out and ask for help from friends & neighbors I am a happy, upbeat, positive person who chose to take this journey with love, understanding & acceptance. Yes, I've been through all the stages of grief at Thomas's diagnosis, but I've always tried to stay optimistic throughout. And this was in part with the help of HealthTree's coach program. Thomas & I connected with our coaches, Tad & Maci, very early on and they were with us every step of the way. I'd like to be with YOU every step of the way. From our experience, we know it's important to connect with people who are in similar circumstances, so I'll tell you a little bit more about me: I'm 45 years old, we do not have children (but one 4-legged fur baby, Lola!!) and I work as a textile & interior designer. I speak English, Spanish and German (I prefer English as my native tongue, but can help guide you in Spanish as well). I hope with my experience, we can find a connection and I can help you in YOUR journey. Let's get started and through this together!!

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