Pamela Allyn

I was diagnosed with MGUS at age 47. It didn't worry me a lot because I knew the majority of people with MGUS never get myeloma, and I was monitored according to my doctor's recommendations. However, I was diagnosed with myeloma in 2016. The time around diagnosis was incredibly hard. I had just moved, and the new doctor allowed an unconscionable delay between signs of myeloma and definitive diagnosis, during which time a huge tumor grew in my right pelvic bones, leading to the worst pain I have ever felt. Although it is much better, it continues to hurt constantly to this day, and I still use narcotics. I sought a myeloma specialist in Portland, a five hour drive away, but usually flew with a wonderful organization called Angel Flight. Induction treatment was radiation for the terrible, painful tumors, followed by carfilzomib, revlimid, and dexamethosone for five months. My oldest son, who is a pharmaceutical scientist helped me so much during this time, both helping to evaluate the treatments and flying out often to be with me. And my partner Katy patiently found foods I could eat, and took me outside to be in nature, first in a wheelchair and then with a cane. The first couple of months remain surreal in my mind. I was in shock and pain, and very anxious. More recent years have been more normal than I could have imagined at that time. I underwent a stem cell transplant in 2017 with SCCA in Seattle. They were wonderful, and I have siblings there who did some backup care of me when Katy or son Ari couldn't be present. After the stem cell transplant I was in complete response, but had a very small lingering monoclonal spike. They said it might disappear, and it did, so that I was in stringent complete response with negative MRD, and I have not relapsed on revlimid maintenance. In this sense I've been very lucky. I can now walk and hike 5-6 miles on good days, often without a cane. Even though I know I've been very lucky, the burdens of living with myeloma do weigh on me. Pain is a daily burden. I have osteonecrosis of the jaw due to taking bisphosphonates. I am required to carry out exceedingly thorough dental care because if I ever lose a tooth the resulting wound may never heal. I worry. I've had quite a bit of digestive problems, which may be due to the revlimid I've been taking since transplant, or may be partially for other unknown reasons. So, experience with diarrhea, nausea, and constipation, and I have a lot of ideas for how to deal with all of them. I like talking with people and could share my experiences and empathize with a coachee. I'm not really an expert in anything, but all of us who have myeloma are a kind of expert that those who don't, are not. I am bilingual in Spanish and hope to help out with Spanish speakers if the need arises.

Susana Vivares

I was diagnosed with smoldering multiple myeloma in 2019. After much reading and research, I decided to go for ASCT on 10/2022; all went well. Currently, I am under maintenance with Pomalyst low dose. I continue to educate myself about everything concerning MM. It is an endless task, but one I embrace with optimism because of all the medical progress in treating MM.

Marianna Scimeca

I was diagnosed with multiple myeloma in 2011. After chemotherapy, I had an autologous stem cell transplant in February 2012. Since July 2012 I have been in remission with no sign of the cancer. I was on oral maintenance medication for several years. I am on no cancer medication now on medication for neuropathy in my feet. I am a very positive person and believe strongly in the body/mind connection.

Melissa Rosenbauer

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!!