Jessie Daw

multiple myeloma coach since 2020

I was diagnosed with smoldering myeloma in late 2016, after a few years of having increasing severe respiratory infections every 2-3 months. I live in South Dakota, and see a local onc/hem doctor quarterly, with one of those quarterly visits replaced by a trip to Mayo Rochester to see a specialist. I considered some clinical trials early on in my diagnosis, but haven't entered one. My numbers have remained pretty stable since diagnosis. Recently, I went through full work-up for amyloidosis, and that was negative :-). I changed some things in my life in the year after diagnosis, including leaving my job and focusing on quality of life issues. In that respect, this diagnosis has been a blessing. Of course, I'd rather not have the diagnosis, but it spurred some changes that I don't think I would have made otherwise, and I feel like my life is richer because of those changes. I have become involved in patient advocacy, as I started South Dakota's first myeloma support group. I also have participated in an MMRF Moving Mountains for Multiple Myeloma event, and I really enjoy serving as a Myeloma Coach. I value the time I get to connect with others who have myeloma. We all have our challenges, and connecting with others around those challenges, as well as the good things in our lives, is really meaningful.

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 life after the transplant and the many dietary changes and lifestyle that I have made since being diagnosed. 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 AM A FINANCIAL COACH FOR ALL BLOOD CANCER PATIENTS. 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 reach out. Wishing peace and love to all.

Joan Rodriguez

multiple myeloma coach since 2023

I was diagnosed with Mgus in 2003, at the age of 38. My symptoms of neuropathy in my feet progressed in 2004. I had to give up my career of 18 years as a Dental Hygienist. Initially I was treated even though I had Mgus because my neuropathy was severe. We started with plasma apheresis, which was unsuccessful. Then we moved onto RVD. The Velcade at that time was a long infusion, it made my neuropathy worse. I had severe bone pain from the waist down. I ended up in a wheel chair, then walked with a walker for 3 years. I progressed to walk with a cane for 2 more years. We also tried Thalidomide. Ultimately, we stopped treating the disease. Instead we just treated the symptoms of severe bone pain with narcotics, for 6 years. It was a dark time in life and I had days of being bed ridden. After a severe reaction to one of the narcotics, I weaned myself off all of them. It was hard, lots of pain. Miraculously, I had 7 years of bliss. I even walked without assistance. I still did check- ins and blood draws yearly with my oncologist(MM specialist). In 2016 I progressed to high risk smoldering myeloma. I entered a 2 year clinical trial. I received a partial response. A few months after the trial ended, I became a active myeloma patient. I had rib and back compression fractures and multiple lytic lesions through out my body. I had radiation therapy and started induction for a autologous stem cell transplant. My transplant was in 2020,I achieved a complete response. I relapsed 21 months later. A MRI found a plasmacytoma in my spine and a new lesion in my hip. We determined at that point that I was non-secretory. I had spine surgery December 2021, replacing vertebrae with rods and screws. Afterwards I received more radiation and I was listed for Cart T therapy. I received my T cells (ABECMA) September, 2022. I did develop grade 1 CRS syndrome. I have achieved complete response. Sadly just months later I relapsed again. I started Teclistamab August 2023. This treatment was very tough for me. My wonderful, supportive and caring husband has been there with me the entire journey. He has been my caregiver since we wed in 2016. I have great faith! My circle is filled with a supportive church and loving friends. And after all the things I've been through, I still have intentional joy!! 20 years and counting