Ana Rocha

blastic plasmacytoid dendritic cell neoplasm coach since 2023

Hello I'm a Portuguese woman. I'm 53 years old and I was diagnosed with myeloma (non-secretory) in July 2021. I went to the hospital with a lot of back pain and I couldn't move my right arm anymore and I could barely walk. As soon as I was diagnosed, I started doing the 1st chemotherapy on my birthday, 08/30/2021. I was hospitalized for 8 months. 3 of which I couldn't move and then I went to the long term care and started physical therapy and started walking. I've already had 2 autologous transplants and I'm currently in remission with suspected MRD+. In Portugal, MRD is not evaluated.

Laurie C

blastic plasmacytoid dendritic cell neoplasm 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.

Jessie Daw

blastic plasmacytoid dendritic cell neoplasm 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.