Meet Others Attending the 2025 Survivorship Symposium

About Me:  My husband, Robin, recently completed his stem cell transplant. We are continuing to learn!

I am also a living kidney donor and the team manager for Team MN-DAK, which promotes transplantation and competes in the Transplant Games of America.

About Me:  I’m going to be nine years since diagnosis of CML. Dr was sure that it was contained within my blood. And was told that I had the best of the worst and could control it with glevic, one pill a day for the rest of life four months later when I started getting these headaches that were short and very painful lasting for 10 to 15 minutes. After four trips to ER one of the emergency room doctors suggested that they needed to do a spinal tap and it confirmed that my CML had crossed the bone blood barrier. I had CML in my central nervous system. Drs recommended that they needed to insert a Omaya port in my skull to make access to my central nervous system easier for me to receive treatments. This was in November of 2016 and still have it today as a reminder. In January of 2017 I was admitted to SCCA/UW. I was preparing for Stem Cell transplant and my sister was my donor. Drs told me more than once that my chances of survival were slim. I had my transplant on February 29, 2017. Don’t remember one day of March. Things started getting better in April. I had some very interesting situations going on during recovery. Nurses have to have some funny stories about their patient. I know my wife bless her heart was by my side and the best advocate ever. Not sure I wound be here today without her support. My goal was to be home for my son’s wedding mid June 2017 and I return home 3 days early. I thank God for my family and blessings.

About Me:  Hi, my name is Marc, I’m 57, from Victoria, BC — originally from Montreal and a French speaker. I was diagnosed with diffuse large B-cell lymphoma in December 2023. After R-CHOP chemo and a stem cell transplant, I underwent CAR-T therapy (Yescarta) in April 2024. I’m back at work now and being closely monitored — with a biopsy coming up soon to investigate some suspicious neck activity detected by the last PET scan. Fingers crossed it’s just inflammation or those CAR-T cells still doing their job!

About Me:  I just had a successful bone marrow transplant with little to no GVHD.

About me:  Hello.  I would love to hear from any and all MDS survivors. As I have been dealing with weight loss (unless I over eat), being cold (I have to over dress to be warm), and oral CGVHD as well as skin CGVHD. From what I have found out is that AML patents don't suffer from weight loss, but weigh gain. I would like to know what medications, exercises or supplements that have helped you.

About me:  Always seeking to learn more about my cancer and related diseases and their treatments. Just passed the 4th anniversary of my SCT. I’ve been cancer-free but dealing with respiratory and immune systems. Thank you, BMT InfoNet, for all you do, and wish all good outcomes with their treatments!

About me:  My name is Kimberly, I'm 36. I was diagnosed with FA in October 1997, and had my BMT in November 1997. My Brother was my donor. I just got diagnosed with Esophageal Cancer last year and under gone an esophagectomy. I am currently cancer-free. I love to be outdoors, hiking, rock climbing, kayaking, and I love to paint.

About me:  I was diagnosed with multiple myeloma in 2021 while in my 13th year as a law enforcement officer. Unfortunately, I had to medically retire. I’m still adjusting to my “new normal” way of life, I’m always looking for ways to bless others, and I’m also eager to learn new things about treatment and survival of cancer.

About Me:  My son was 2 years old and my daughter, just 4 months old when I was diagnosed with CML in 2000. It was devastating to think that I might not be there to guide and nurture them. In 2003, I had an allogeneic stem cell transplant with an unrelated, mismatched donor at the UW/Fred Hutch Center in Seattle. For 16 years, I stayed in remission, but in 2009, I lost that remission. Fortunately, Gleevec was able to put me back into a major molecular remission that I have maintained to this day. My son is a filmmaker and cinematographer and my daughter is a mechanical engineer. So grateful to have been in their lives for so many years.

About Me: Bone marrow transplant survivor for almost 18 years!

About me:  I’m scheduled for a BMT in June 2025 and want to learn as much as possible about the recovery process and managing the possible side effects of the various medications that I will be exposed to.

 

About me:  I reached my 20th year post transplant last September and I've been blessed to meet my donor a few times. I'm not all that interesting but the fact that I'm here twenty years later and have been able to watch my 4 year-old grow up to be a man and share that life with him is something that I never thought would happen. We've made memories and I've seen all the moments of his life. Life after transplant is a blessing and gift that there aren't words to describe. Gratitude doesn't begin to cover it. I want to share experiences with other recipients and find out if what I experience, healthwise, is similar to others with my medical history. I attended in person one year and it was the most emotional experience. I took away so much from that few days. I want to experience that again. The picture I shared is the day I rang the bell and a meeting with me and my donor years later

About Me:  I'm living a bonus life after being given very little chance of survival upon my second cancer diagnosis (DLBCL that traveled to my central nervous system). CAR-T was my miracle. I'm still here 16 months post transplant. And still in remission. I'm here to learn how to deal with two issues. Fear of catching a viral infection which so far at least has caused neutropenia. And waiting for the other shoe to drop in terms of cancer coming back in one form or another.

About Me: I was diagnosed in 2007 with AML. I went into remission after 6 months of chemotherapy treatment but then relapsed six months later. I had a BMT in 2009, with my sister as my donor. Since then, it has been a challenging road with heart failure, a pulmonary embolism and GVHD. It has also been great. I was able to see my daughter graduate grammar school, high school, college, law school and get married. My husband and I are now trying to enjoy our time together as empty nesters. My reason for attending the symposium is that I would like to hear how others are coping with their GVHD symptoms.

About me: I considered myself to be one of the healthiest and strongest 70 years old person on the planet. Numerous trips to the Alaska wilderness and fishing adventures to multiple locations were part of my everyday life. Then while on a camping trip on the Colorado River I awoke to a significant pain in my lower back. After several trips and numerous tests with my primary care physician, I received the news. I was diagnosed with multiple myeloma. A cancer my older Brother had succumbed to several years before. My wife immediately went into research mode and established an appointment with an amazing oncologist. After an extremely difficult 18 months of radiation and chemotherapy I opted for a stem cell transplant. Now nearly five years from my initial diagnosis I’m still able to enjoy life and watch our Granddaughter grow up. To all the people regardless of your diagnosis I would say this: Hang in there, stay positive, every day you see the sun rise is a blessing.

About me: I'm two months shy of two years being diagnosed with high risk multiple myeloma - 1q gain. I responded well to induction therapy and then a stem cell transplant December 2023. I'm one year on maintenance and doing well. I've decided having important purposes and setting an intention - I intend to live a long, healthy, quality life full of abundance, joy and love - will give me at least 25 more years into my 80's.

About me: I am a cat dad and collector of antique medicine bottles as well as glass and porcelain insulators for over 20 years. As a young adult AML survivor I look forward to network and learn tips and tricks for thriving during and after treatment and to be able to share those with those I mentor through LLS and Cancer Hope Network.

About me: Hello! My husband Mark, 59, will receive his SCT on May 13. He’ll be admitted on May 6; his sister is his donor. I hope the symposium will be recorded as I’ll be with Mark in the hospital a lot! Mark was diagnosed with Essential Thrombosis in CA in 1998, MF in Dublin, IRL in 2012, and CML in Boston in 2021. I would love to learn everything about recovery: pain, fatigue, cognitive decline, exercise that helped, supplements, ability to work. As Mark’s caregiver, I want to be as prepared and informed as possible. He prefers to wing it! We have 3 wonderful daughters and so much to live for. Thank you.


 

About me: I was diagnosed with Stage 1 Multiple Myeloma in July 2018 one day after my 65th birthday. I had a stem cell transplant in December 2019 and my 100 day recovery coincided with the Covid 19 lockdown. I entered the three year Auriga clinical trial in April 2020. Currently in a full stringent remission , off all meds since February 2023, and being monitored every 6 months. I spent my professional career as Senior Business Administrator of the University of Maryland Department of Neurology (now retired), where among other duties, I oversaw hundreds of grants ranging from basic science, to translational to clinical trial grants. I have also given several talks on how to properly manage clinical trials. I now have an additional perspective on this by actually being a clinical trial research subject. I have a great network of family and friends, exercise regularly and travel domestically and internationally. I am also a Myeloma Coach for the HealthTree Foundation, and a patient Advocate for the International Myeloma Foundation and the Leukemia and Lymphoma Society.

 

About me: My husband (also attending) will be having a bone marrow transplant in June and I will be his primary caregiver. I'm looking forward to learning how I can support him and also to perhaps meet others who will be able to help me navigate this medical adventure.

About me: FACT: Blessed that I'm still here, My name is Kim I'm 61 years young and on April 27 will be my rebirth of 15 years.
I have 3 amazing adult children and waiting and hoping that I will become a grandmother in the near future and still be able to hold, play and see them.
GVHD has such a huge part of my life and put a hold on so many pleasures that I once had.

Im hoping to connect with other local survivors and pray that they find a cure for all who deals with this nasty word cancer. So much to say but words get in my head and get me confused. I wish Medicare along with Medicaid would acknowledge our financial struggles. Medicaid doesn't really allow us the rights that we truly need for our continuing healing and to save for a rainy day especially when your doing this alone with a compromised immune system. BUT we have no choose. Its survival

About me: I'm so excited as I recently celebrated my 10th re-birthday two months ago and I am truly so grateful for each new day of life. I am passionate about paying it forward and helping fellow cancer patients and caregivers as they navigate their journeys. I've been blessed to have the opportunity to work with various cancer nonprofits to share my journey of "Hope" through my voice and help mentor others and offer support. Together we are Stronger! I'm excited to join the BMTinfonet.org conference again this year as I always learn a plethora of information that helps support me in my continued survivorship and in my work with others.

About me: HLH triggered diffuse large b-cell non-Hodgkins lymphoma

About me: I’m on the older end of the spectrum, 73 yrs, for having a stem cell transplant. I had my transplant 18 months ago. So far - so good.
I was diagnosed with testicular cancer at age of 38. I had two MI’s 11yrs ago. I prostate cancer 3yrs ago, a stroke 2yrs ago, a quad hernia this past Feb. Presently, I’m 75 & feeling darn good.

About me: Hello, I’m Mayte and I live in Miami. On 2022 I was diagnosed with melanoma (removed, was in situ), 2023 diagnosed with MDS, got my transplant on March 2024 (my son was my donor), and on Nov 2024 diagnosed with cervical cancer, had a full hysterectomy and ended not being cancer after got the biopsy but cells showed as a pre cancer so at the time it was my best option.
The last 3 years were hard, painful and very stressful for me and my family.

Today, a year after my transplant, I can say that 2024 was a year of many lessons learned, which helped me became a better person who appreciates life from another perspective. I value the beautiful and lovely family I have and love and “admire” my husband more than before! I’m a different person yes, but this process allowed me to value everything and everyone! Living each day to the fullest, feeling thankful and blessed for the life I have!! Stay strong and BELIEVE!!!

 

About me: 5 1/2 yr post bone marrow transplant. Still dealing with some GVHD issues.  Retired, currently volunteering for a dog rescue, and local food bank in Arizona.  Active, fit and would like to provide support for, and learn from others that are post bone marrow transplant patients.
Share best practices and healthy tips.

About me: I had my SCT on my 69th birthday in 2023. I am in remission and almost to the 2 year mark. Since my transplant, I have been able to enjoy spending a lot of time with my grandkids and attending their sports events. I have continued my gardening and have learned to play Fortnite with my grandkids and daughter. That has been more fun than I ever expected!! We adopted a new puppy, which has been a blessing and a joy. I haven’t traveled too much because I don’t have my measles vaccine yet, but I am enjoying life to the fullest. I feel very blessed to be where I am today and I’m so grateful for the continuing research and education concerning the many blood cancers.

About me: I am a retired voice professor living in Door County, Wisconsin. I have had mm since July, 2019. Now have had stem cell, CAR-T, and currently RRMM on Talvey since June, 2024. Fairly stable blood nos and dealing w/ side effects. Fairly good quality of life. Every day is a gift!

About me: AML 3+ years post-transplant. GVHD and complications are my topics. I've coached several people and am active with the blood cancer nonprofits.

About me: I Will celebrate 20 years post transplant on July 16. I want tips for fighting with insurance companies for needed medications.

About me: I am 6 years post SCT; I am an advocacy volunteer with NMDP (formally Be The Match); I am now a certified patient advocate; I also speak about 'Using your voice in healthcare', Mindset and of course, sharing my story to raises awareness of the registry and inspire people to register.

About me: I’m a 65-year-old gentleman from western Massachusetts, a business owner, father and grandfather. 2 time cancer survivor who is looking forward to meeting others who share my story and diagnosis to learn more about how to live with the side effects after treatment'

About me: I just passed the 4 year anniversary of my allo transplant at Stanford for B cell ALL. I’m free of cancer and have been mostly free of GVH. I have to deal with ongoing respiratory and immune system issues but continue to do my best to get on with my life. I’ve appreciated the information I’ve gotten from bmtinfonet at the prior conferences, as well as a writing course I took from them. I’m passionate about sharing my experiences with other patients and caregivers, and my story will be featured on the last morning of the conference. I hope to met other patients, and wish all the best of health!


 

About me: I’m Linda. I was diagnosed with multiple myeloma and Amyloidosis in 2020. I had a stem cell transplant in 2021 and have done well thus far. I am attending the symposium to stay informed and to support BMTnet. I’m retired and enjoying spending time with my family. I like to cook, bake, and do some easy gardening. This year, my husband built a raised bed for organic herbs. I have some very satisfying volunteer work in the infusion center supplying pillow, warm blankets, snacks and beverages to chemotherapy patients to help make their experience more comfortable.


 

About me: I have had two bone marrow transplants from unrelated donors in April 2020 and September 2023 for acute myeloid leukemia (AML). I believe gratitude and faith are powerful aspects to healing. I hope to learn ways to continue to manage my health from the symposium. I wish everyone well and want to remind everyone that we don’t have to have courage for everything at once. Wishing you all peace and grace.

About me: 23 years with CLL, then MDS. Want to learn more about chronic GVHD

About me: I was diagnosed with Multiple Myeloma in June 2020 had an autologous bone marrow transplant in March 2021. I am out of remission and just had mandiblectomy, where my fibula bone was removed from my leg and used to create a new mandible. I am going to have CAR-T cell therapy soon and will hopefully be in remission longer this time. Keeping a positive attitude, having a good sense of humor and having a strong faith I have helped me navigate surgeries, pneumonia, broken bones, etc. I am looking forward to learning more about improving life and staying healthy post CAR-T therapy. Stay strong and happy!!

About me: I am in treatment for my 3rd unrelated cancer. I had endometrial 11 years ago, breast cancer 6 years ago and now multiple myeloma, for which I have been in continuous treatment for 5 years. I had a stem cell transplant 4 years ago and now I am preparing for a Car T treatment next month since I have never achieved a remission with any of the myeloma treatments. I am an artist and was also a preschool teacher for 25 years until the day I was diagnosed with the myeloma. I have gained much extremely helpful specific knowledge about stem cell transplantation and Car T treatments that has been provided by the BMTinfonet and nowhere else. I consider it a HUGELY important service designed for the specialized group of medical patients that includes myself. I am looking forward to all the interesting topics to be covered by the experts presenting in the symposium.

About me: I am a two time survivor. I was diagnosed in 2011 with Multiple Myeloma and had an auto transplant that went well and I was healthy until 2022 when I was diagnosed with ALL. I had another transplant from a young man in Germany who was an 8 out of 10 match. After some hiccups during recovery, I am now cancer free and celebrated my 3 year birthday. I have been in contact with my donor and hope to meet him soon. Keep the faith! Life is good, and I’m here to talk about it. Stay strong!

About me: I’m a positive person with a strong faith. I’m going to be having a stem cell transplant in June. Looking forward to learning more about best steps to have success!

 

About me: I am a Family Nurse Practitioner by trade, who will be celebrating my 3rd anniversary of my BMT 5/5. God has blessed me as I also live with my elderly parents. I want to learn more about how to live life following my BMT. Included is a picture of my parents, brother & myself making music together


 

About me: I'm a 69 year old, 10 year survivor of "Large Soft B-cell NHL". First diagnosed in 1999, in 2000 my initial treatments were 8 rounds of 'CHOP'. Then in 2013 it reoccurred and treatment began in 2014 with three rounds of 'R-ICE' followed up by an Autologous Bone Marrow Transplant which utilized 'BEAM-R'. I was in hospital for 28 days (due to a virus which was initially difficult to identify). After approximately 9 months of the good ole' complex recovery, it was determined that I was in full remission.

A strange thing began to happen, approximately 2 years later, all 4 of my extremities started developing neuropathy and this has continued to be an issue. A secondary problem has been joint degeneration, not in all joint but in my already complicated back, in both hands and in both knees (the two knees required replacements in 2016) it has continued to spread but at a very gradual rate. There is still a lingering difficulty with memory which has from day one was frustrating and still is today. And an additional added issue (which started in the first year post transplant) has been an abdominal problem and yes, it involved occasional constipation (pardon the tmi).

Sooo, though I am glad to be alive, very glad but still contending with various levels and different types of pain. Grateful for each year that the wonderful staff at both my oncologists group and the team at the Adult Bone Marrow program in my local hospital. (Note: bless Ann my nurse after countless blood cultures and no success, for having me spit in a cup, it was the way that the virus was finally determined and treated. She saved my life!)

About me: After a radical mastectomy in the summer 1993, I was connected with a special study at Sutter Cancer Center. By the end of the year I had high dose chemotherapy, and autologous BMT, with a follow-up of radiation. Although no longer performed, my procedure meant I was able to complete my career as a Special Education teacher, move to the Northwest, and have a Sci-Fi series published along with collections of short stories. Especially now, after 31 years, I appreciate the BMT continuing education and encouragement.

About me: I'm taking part in a clinical trial for car t-cell therapy and its efficacy for autoimmune diseases and I'm Day+13 of my transplant!

About me: I had a stem cell transplant, December, 2019; Car-t procedure, 2022, 4 relapses and now on Talvey for 1 year. Anyone else on Talvey? Would love to talk vwith you. Also want to know what treatment comes next, after Talvey! Thank you! SARAH from Wisconsin

About me: This year I will be eight years post transplant on August 31–only three days before my real birthday! When I got my transplant I said, “I’m getting the best birthday present ever!”
My journey has a lot of amazing stories in it. One interesting fact is that I, as a nontraditional older adult getting my undergraduate degree, was attending the University of Pennsylvania while I was going through treatment. I called going back to school my ‘Life Do Over’’, never anticipating I would have a REAL life do over!
It is because I was in school that I knew about PENNMEDICINE. Originally living in Florida, I presented with a skin rash that I tried to get doctors to diagnose (for weeks) but couldn’t. Once back at school, I sent an email blast to PENNMEDICINE medical staff and within 36 hours had my diagnosis and within a week was getting treated.
The symposium has helped tremendously in the past with addressing issues and giving direction on assistance with those issues.
I’ve been so fortunate to have a great successful experience in my BMT journey.

About Me: 5.5 years post-transplant to treat ALL PH+. So blessed to be alive! Watching my son grow up and appreciating the love and support of my incredible husband. He never complained and was the best caretaker-partner and fruend during the toughest times. Cheers to the future.

About me: To get married in PA in 1983, couples had to take blood tests to rule out the presence of syphilis and rubella. From the results of my blood test, I appeared to have only a few months to live. My hemoglobin was at 5 and my platelets were at 50! I was 25 years old. We couldn't find a local physician to diagnose the cause. No internet, no Microsoft, I looked for answers in medical libraries and other resources. In my day, in almost every household, the woman got Good Housekeeping Magazine and the man got Readers Digest. I turned to the Good Housekeeping Issue listing the top physicians in the country by domain. I wrote all 24 Hematologists/Oncologists and gave them what we knew so far and asked for recommendations. And they all wrote back. An experimental treatment kept me in remission until I was 55 and a bone marrow transplant then saved my life. I celebrated my 67th birthday yesterday and Joe and I will celebrate our 42nd wedding anniversary in June (he married me anyway!). By trade I was an IT Professional, by heart I am a creative soul. Much like the process of creating art, the process of dealing with catastrophic illness is best done by eating one's elephant, one bite at a time. Art and creativity have played a very important role in my life during my challenges which span 40 years with three bone marrow failure diseases (Severe Aplastic Anemia, PNH, and MDS). I have learned how to eat my elephant.

About me: I was diagnosed with lymphoma over FaceTime by my Gyn Oncologist daughter in May of 2020!
I did Epoch chemo that did not do the trick and then more chemo that was a bridge chemo before I had
CarT and that was done on July 5, 2021!
I celebrated my 81st birthday in March and thank God every day for CarT along with many doctors and.nurses including my daughter and husband who helped me every step of the way!
The thing I would like to learn is …does your immune system ever fully recover???

About me: I’m a stage rare blood cancer survivor name - Subcutaneous panniculitis T cell lymphoma with HLH.
Had my stem cell transplant during Covid April 2020.