Meet Others Attending the 2023 Survivorship Symposium

My story starts the middle of May 2022 when I got Covid. I was run down and out of energy all through June, and in July I was starting to feel "back to normal.” I am self-employed and work in the construction industry (commercial carpentry). It is physical work. Going into July I started to go backwards, and my energy level was dropping daily.

July 21, 2022 Is a day I will never forget. I was at work sitting down cutting some metal studs for something I was framing, then I walked no more than 20ft to the lift I was working off of, and I was COMPLETELY worn out. At this point, I am thinking to myself, "Ok, something is not right; this can't just be from Covid"."
So I loaded up my tools into my job box and went to urgent care. Upon arriving at urgent care, they looked at me, took my vitals and sent me straight to the ER. Dumb me thinking no big deal, so I don't call anybody. I just drove myself to the ER.

So I get to the ER and they take me right back, no waiting (there were at least 15 people in the waiting room); this has never happened to me EVER. Urgent care had called ahead, so now I am starting to worry/wonder, "What the heck is going on?" The ER does all the normal ER things blood tests, c-scan, X-Ray, etc, etc. A few hours go by and the doctor comes out and tells me I have AML, and they are sending me to The James Cancer Center at OSU as soon as they have a bed ready. I don't think I really believed them yet.

Me being me, always healthy never sick, tell them, "I need to take my car home and drop my dog off at my parents’ house." At this point my nurse tells me, "YOU ARE NOT GOING ANYWHERE, your hemoglobin is at 3.6, and your blasts are at 96%,” so it is JUST starting to sink in now, but I am bullheaded and argue with her about leaving for the next hour or so. It finally sunk in when they started bag number 2 of blood, so I called my Dad. I don't remember saying this; it was told to me after the fact, but I guess I said to my Dad, "I need you to go to my house and get Havoc (the dog), then come to St. Ann's Hospital and get my car. They say I have Leukemia and are admitting me to OSU.” We laugh about this now, but at the time my parents were in shock.

So I spend 6 days In the hospital; they let me go home for a few days. Back to The James for more or less all of August for intensive chemo. When I got home I stopped at my parents' to pick up Havoc, he was outside at the time, and when he saw me, he ran to the car, and jumped right across me into the passenger’s seat. He was done with me being in the hospital; so was I.

September through December 12 lots of tests. Sometime in November, they found a 10/10 match with a different blood type, but they were still excited about how good the match was. Whoever you are, I can't thank you enough. I hope someday I can meet you in person and give you a HUGE hug; you will be my brother in my mind for the rest of my life.

More tests then back into the hospital on December 12th. December 19 was my rebirth day, transplant day!! Rumor is that I started fighting/begging to go home on the 20th, but I plea the 5th on that. Guess I did not want to be in the hospital for Christmas. I came home from the hospital on 1/7/23, and the next day my Dad was hospitalized with viral meningitis and could not return home, because I was there, so he stayed with my aunt about 5 miles away. My poor Mom was running back and forth to the hospital, then to my aunt’s, trying to take care of Dad and me. For the next few weeks I was sooooo weak I couldn't do anything for myself. Thank God for my Mother; she was my caregiver. This would also be a good stop to thank BMTinfonet and Natalie; she is who they hooked me up with through caring connection. Words can't describe how helpful that was and still is today. She and I still text back and forth.

Weeks go by and I feel better and better every day. Around the middle of March, I even got back to work 20ish hours a week as a supervisor. Doc was very strict on wearing the N95, and “No tools until your CVC is out.”

I am writing this on 4/11/23 - day +113, and today I was officially "back to work." I wore out fast and went home early, but those were to Doc's orders and one of the benefits of working for myself is that I can get away with it.

The Devil
whispered in my ear
“you’re not strong enough
to withstand the storm”
Today I whispered
in the Devil’s ear
“I AM THE STORM”

Hey y’all! I’m Cassie. I’m 36 years old and I was diagnosed with 15% blasts MDS on 12/29/21 while beginning my extended stay on the leukemia floor at Northside Hospital in Atlanta Georgia after almost dying from breathing complications at home and rushed to the ER on 12/22/21. I was originally miss diagnosed with lupus early December.

It has been a crazy year and a half with a large amount of aggressive chemo and a stem cell transplant on March 31, 2022. I’ve had my good times and I’ve had my hard times but they were all living times, I’ve had heartbreak and have joyful occasions during this. I can’t work and I’m a single mom. My independence has been stripped from me.

I am now, as of two weeks ago, 100% donor cells. I suffer from depression and anxiety, neuropathy of my hands and feet graft versus host disease in my gut, mouth, and eyes. Possibly liver but I am still on immunosuppressants for that. I’ve gained 40 pounds because of medications and the transplant put me into early menopause.

I am attending so I can meet other people or at least hear about other people that are like me and know where to go from here, other options of treating GVHD.

Stem Cell Transplant in August 2022.

Still recovering from G.I. GVHD.

Interested in hearing recovery stories of people in the same situation.

I am a 2-time blood cancer survivor. I have been dealing with various health challenges; thus, been in the fight of my life. My insurmountable health challenges have ranged from two blood cancers (non-Hodgkins Lymphoma and Acute Myeloid Leukemia, AML), that came to kill, steal and destroy my life. If this was not enough, I had a bone marrow transplant and two brain surgeries. The brain surgeries resulted from (1) a brain bleed in 2019 and (2) a brain aneurysm in 2022.

Currently, I’m suffering from two autoimmune diseases (Rheumatoid Arthritis and Myastenia Gravis Disease).  

Through it all I’m here and still fighting to continue staying encouraged and continuing to heal.  Although I have been through many health challenges I’m a fighter.  I continue to encourage myself by sharing love. I even wrote a book last year named “The Faith Fighter vs The Health Destroyer; Fighting For My Life Journey” and I’m so grateful that it is being sold on Amazon. In my book I wrote about my journey (daily journals) in hopes that my story will be an encouragement to others going through and bring love and joy to their heart. After 2 brain surgeries and cognitive challenges, I never thought I would be an author.

Triathlete diagnosed in 2018. Autologous stem cell transplant 2018. In remission until May 2022. CAR T transplant January 2, 2023.

Interested in CAR T-cell lectures.

I was diagnosed in 2021 with MDS and in February 2022 I received an allogeneic stem cell transplant from a 20-year-old female in Germany.

To celebrate my one-year ReBirthday earlier this year I hosted a blood drive and Be The Match registry event, with a party and smash cake, of course! I am currently learning to speak German so that I can thank my donor in her language.

I was first diagnosed with Anaplastic large cell lymphoma when I was 11 years old. I remember it was the summer before going into the 7th grade, and the news completely gutted myself and my family. I received treatment at a pediatric hospital in my hometown of Birmingham for a year until I was in remission. After that, I was in remission for 7 years, and I went off to begin college in Engineering.

During the summer of my freshmen year, I suffered a relapse of my childhood cancer. This time I did chemo and a Stem cell transplant as my treatment. Now I am in graduate school, 4 years into remission, and doing wonderfully!

I share a lot about my story on my YouTube @naomilovesnature and Twitter @NaomiPitts11, I love connecting with other survivors!

I want to learn everything about my ACUTE MYELOID LEUKEMIA.

I am 73 years old. I was diagnosed in Feb. 2019. I have not been successful in meeting my donor yet.

My stem cell transplant was in January 2021.

Hello! My name is Greg, and I am married to the most amazing woman who has been stronger than a rock over the past year. We have a bright and incredible 4yr old little girl, Juliet.

I was diagnosed with AML in April of 2022. Thanks to the fantastic team at New York Presbyterian, I was matched to my donor and received my transplant in June of 2022.

So while I am getting closer and closer to my 1st anniversary, I thought attending this symposium and hearing survivors and doctors talk about so many different topics affecting me would be helpful.

I'm a 3 time Acute Lymphoblastic Leukemia Survivor and am very passionate about spreading my message of Hope and helping fellow cancer patients and caregivers navigate through challenges. I am very excited as I just celebrated my 8-year re-birthday this year with no evidence of disease from my lifesaving double umbilical cord blood stem cell transplant done at Fred Hutchinson Cancer Center in Seattle, WA.

Aside from my advocacy efforts, I also have a great passion for animals and traveling. In my spare time, I enjoy Cricut crafting, snuggling on the couch with my cats, spending time with my nieces and nephews, and partaking in fun activities with my partner and caregiver, Benny.

I look forward to the phenomenal annual BMT Survivorship Symposium offered by BMTinfonet.org. I have learned so much over the years with regards to my own survivorship, understanding and managing my own side effects from cancer treatments and transplant, and sharing the knowledge gained with fellow cancer patients. I have had the incredible opportunity to connect with other patients and caregivers at past annual conferences and it's truly been a blessing to meet others that truly "understand" the transplant journey. The takeaways and knowledge gained at this event helps to make me a more confident survivor and thriver in navigating my own journey forward.

I thank BMTinfonet.org for being the amazing organization and educator that you are!

I’m a retired educator who was diagnosed with AML last October. I’ve been dealing with less aggressive blood disorders for years so this didn’t come as a total surprise, still it’s not every day you’re told you need to get a disease treated immediately or you have two months to live.

Two days later I was admitted to NY Presbyterian Weill-Cornell Medical Center where I spent a month getting the leukemia into remission. I returned home for six weeks before being readmitted for a bone marrow stem cell transplant. One of my brothers was a perfect match and three months ago I was infused with the stem cells he donated. Thank you for your kindness Steve!

I’ve been home for two months and am slowly but steadily recovering. Throughout all of this my wife has been my caregiver. She has been a rock and I couldn’t have made it without her incredible support. The treatment and care I received from the doctors, nurses and aids at Weill-Cornell was excellent and I can’t praise them enough.

I won’t start receiving vaccinations until August so I’m living a fairly circumscribed life for now. As soon as possible I’m looking forward to getting together with family and friends, traveling, cooking, gardening, swimming and kayaking. For now I’m helping out around the house as much as I can, reading lots of books, walking a bit every day, and taking lots of naps. I’m very grateful to be alive and know that’s the case only because of the care, concern and love of a whole lot of people.

I’m a survivor and have been in remission for almost 7 years, had two stem cells transplants but developed GVHD.

My drive and strength to fight this thing was the love for my son and all I ever asked God for was to give me a little more time to see my son graduate from high school but I got more time than asked, he’s now in nursing school and he’s my rock and sometimes my caregiver. Cancer was just one of the many diseases I have fought, at 16 I was diagnosed with Myasthenia Gravis, at 44 with lupus, and nine years ago with lymphoma twice…but I keep fighting the fight because that’s all I know how to do!

Being part of the symposiums has helped me feel connected with others like me that empathize with my struggles without judgment, it also helps me learn more about my condition and how to surf the waves of life.

I have had a 30-plus-year career as a clinical social worker, and I found that using my research skills and expressive arts therapy skills really helped with the emotional healing of going through the chemo, infusions, LP's, radiation, surgeries, bone marrow biopsies and ultimate the bone marrow transplant.

Thank G'd, I am doing better and have a great team of med techs, docs and nurses at the University of Maryland Hospital n West Baltimore!

I was diagnosed with AML in August 2019. I had an allogenic bone marrow transplant from an unrelated donor in November 2019. I have since had ongoing bouts with GVHD.

I would like to connect with others who have experienced chronic GVDH.

I’m also a proud dad to my 10-year-old son, Dustin and husband of almost 19 years to my wonderful wife, Jessica.

I was diagnosed in 2014 with MDS and had a double cord transplant in September 2015 that resulted in a 6 weeks hospital stay. Today blessed to be alive and active - hiking, biking, sailing, yoga and other social activities. Science is amazing!

I attended a BMT symposium in Colorado a few years ago and was astounded at the wealth and depth of info but more so by the courage, tenacity and stories from survivors and those still undergoing treatments.

I look forward to this upcoming 2023 virtual version. So many great speakers with a huge range of topics. There are always nuggets of info to learn and enhance our “new” lives

Thanks to all those who work so tirelessly to support others and to the BMT infonet crew who offer this amazing symposium. ❤️

I was "officially" diagnosed in June of '22. I was also informed that CMML did not respond well to other treatments, and I was referred to Colorado Blood Cancer Institute. I had my transplant on October 18th. So now I am six months post-transplant and I am doing ok. Not myself yet, but no big problems yet, either.

I feel very fortunate, and I am looking forward to the symposium.

I was diagnosed with AML on 8/15/22. I had absolutely no symptoms; it was caught by a routine blood test during my physical. I became a patient at Massachusetts General Hospital on 8/17/22 and started treatment on 8/30/22 with azacitidine and venetoclax (known as clinical trial 21-113) of which I did three cycles of before being in deep remission. During this time I also came down with Sweet Syndrome which landed me in the hospital for a week. I was also hospitalized a couple of times for neutropenic fevers.

I was admitted to MGH on 12/9/22 to start myeloablative busulfan/fludarabine conditioning and tacrolimus/methotrexate GVHD ppx for my BMT on 12/15/22. My donor was my sister who was a perfect match. I was discharged from the hospital on 1/1/2023.

I am attending this symposium as I feel that I am not educated enough to know what to expect going forward.

I’m a 6 yr Survivor.  I try to stay as active as possible, I run 3 to 4 miles a day, although GVHD(lungs) has slowed me down, but I firmly believe the constant motion has prolonged my life.

I am a mom, wife, sister, daughter, teacher, and transplant survivor.

I'm attending the symposium to connect with others, learn, grow, and honor the difficult years from my diagnosis to my transplant and now ultimately, my survival and life beyond transplant.

I was diagnosed in October 2015 with AML. During the initial Chemo regiment I went into Respiratory and then Cardiac failure. The Doctor gave me a 2% chance of survival. At the time of diagnosis, I weighed 455 lbs. I had to lose weight during the fight to qualify for a transplant.

In September 2016 I received my stem cell transplant with my sister being the donor. I was down to 300 lbs at that time. My Doctor projected my survival 1-year post-transplant and a "Miracle" if I survived 2 years. I think I have broken his predictions. I currently hold my weight at around 210 lbs. My focus is to encourage other blood cancer fighters to "Never Give Up!" Since the transplant, I have had many small medical battles to deal with including GVHD.

I am attending the seminar to keep up with the latest developments and procedures and how I can incorporate them into my life.

Hello, community! I’m attending the 2023 Survivorship Symposium because I am a survivor of CMML leukemia. Thanks to God’s grace, family, my caretakers, and the hard work of many people working behind the scenes, I received a stem cell transplant just over two years ago.

I developed GVHD in several manifestations. The latest twist of fate is that long-term steroid use led me to develop avascular necrosis in my dominant shoulder. So, I will have a total shoulder replacement soon.

I hope that the seminar will help me learn more about my condition and celebrate living well after transplant.

Pictured are my daughter Punipuao and I enjoying the outdoors! I want to remain her inspiration as long as I can.

I was diagnosed with Multiple Myeloma in February 2020. I received an allogeneic stem cell transplant that July and have been MRD-negative since then!

I have found living post-diagnosis has been harder than during treatment. But thanks to attending last year's symposium I was diagnosed with lung GVHD and have been feeling much better, returning to teaching plus all the fun activities that come with two kids in grade school!

It's always hard to know which aspects of this post-transplant life are to be expected, to be treated or both. A symposium like this truly fills the gap, thank you!

I am told that I am young to have Multiple Myeloma. My brother is 2 years younger and also has Multiple Myeloma. We were diagnosed within 3 months of each other. Our grandmother died of Myeloma 22 years ago.

As I read and learn more about the cancer, I am not finding a lot of information on dealing with the symptoms of the treatments. I am still within my 100 days after an Autologous Stem Cell Transplant. I am looking for more information on how to deal with neuropathy, sleep problems, memory issues and chemobrain.

Also, looking for information on new treatments for when this cancer comes back. I am told that the Myeloma that I have is very aggressive and will return. What do I do then?

I'm interested in seeing if my journey is standard and looking to see what I can do to improve my health

I was diagnosed with AML in 2018 and my brother was a perfect match, so I had a transplant 3 months after being diagnosed. I am treated at the Hospital of the University of Pennsylvania which has an amazing team of doctors and nurses. I am lucky they are treating me.

The first year after transplant was easy for me. Some fatigue, but no major problems. No acute GVHD and no infections. After the first year, I got chronic GVHD which has been a nightmare. It has attacked my skin, eyes, liver, and lungs.  After trying steroids, Photopheresis (not helpful for me), Jakafi and topical treatments the skin is finally under control, but the eyes are a total nightmare. I tried every available treatment: all types of eye drops, hot washcloths, lid wipes, Prose lenses, etc. It is trial and error and I finally found a mix of treatments that allows me to function (albeit with constant planning ahead). Lung GVHD has been debilitating and I hope at some point it will at least stabilize.

I look forward to hearing about the experiences of others, and any potential treatments that are new or that I haven't tried yet. I can also share my experiences, where helpful so that others can shorten their trial-and-error period.

Late April 2021 my pcp slapped me on the back and told me I was in great health for a soon to be 61yo man. Fast forward to my birthday in early June having sought care for swelling and joint pain was diagnosed with gout. Skip ahead to the end of June and no success treating gout with an increase in joint pain sent to a rheumatologist who did routine blood work and referred me to a hematologist asap.

First bone marrow biopsy July 13. Got the AML call on July 14. Sent to local cancer clinic July 16. Hospitalized on July 17. First induction treatment July 21. Discharged in late August. BMT October 19 with my brother as the donor. Maintenance treatment of Onureg and Venetoclax 28-day cycle (2 weeks on, 2 weeks off) from December 2021 to December 2022. Currently, maintenance treatment is paused as some of blood levels are low. Bone marrow biopsy is every 4 to 6 weeks to monitor if the disease returns.

Attending for further education and hopefully learn of what’s ahead.

I was diagnosed with low-grade Non-Hodgkins Lymphoma in January of 2014. By August it had transformed to high-grade Diffuse Large B-Cell and I started chemo. After a year of chemo, I was ready for my stem cell transplant in August of 2015.

I'm one of the very fortunate few to have an identical twin sister who was my donor. I recovered enough after 3 months to return to work and have had no complications. I have a few long-term side effects and want to learn all I can to lead a healthy life.

I know I am truly blessed in my recovery, but after almost 8 years, still feel the emotional toll of the diagnosis and treatment and look forward to learning all I can.

At age 57, I was diagnosed with Mantle Cell Lymphoma on January 31, 2022. After four week-long rounds of in-hospital chemo from February through May, I had an autologous bone marrow transplant on June 27, 2022.

As a new survivor, this will be my first BMTInfoNet Symposium and I am looking forward to learning with and from others who share the BMT experience.

I was diagnosed with multiple myeloma in May 2021 after suddenly experiencing weird episodes with my heart, discovering high protein levels in my blood, and finding an aggressive tumor on my spine. My life abruptly changed!

Prior to being diagnosed, I was extremely active (a life-long athlete), into all things health & fitness related, and enjoyed traveling. I’m grateful to God that I’m not in the condition I once was but I’m still trying to recover and find a sense of normalcy again.

Hi y'all. In 2017, I was diagnosed with AL Amyloidosis.  After four months of induction chemotherapy, I underwent an autologous stem cell transplant in March 2018 at Presbyterian St. Luke's in Denver. Since then I have been under the care of Rocky Mountain Cancer Center in Boulder and the Colorado Blood Cancer Institute in Denver.

I responded very well to my therapy and have been able to resume most of my prior activities. At 70 years old this is very important to me as I love the great outdoors and all it has to offer.

Last year was my first year attending the symposium and found it very informative. I am interested in advancements in treating peripheral neuropathy, maintenance therapy concerns, nutrition and targeted therapies for CKD.

In 2012 I was referred to a hematologist for concerns about my blood work and was diagnosed with pancytopenia. Life continued relatively normally until 2022 when the disease became increasingly acute and clearly identified as MDS.  The choices were either a bone marrow transplant or death.

I had an allogeneic transplant in December 2022. I am grateful to my donor whose generosity enabled me to have a "second chance at life" and for an awesome support system that has encouraged and assisted me throughout. I am a licensed therapist and hope to return to part-time work as my energy and stamina improve.

I have many questions about the prognosis and any steps I can take to avoid GVHD. Thank you for giving me the opportunity to learn more.

I was diagnosed with AML in 2021 and went through very aggressive chemotherapies and radiation before receiving a stem-cell transplant from a related donor in 2022. I developed MRD shortly after and went through additional rounds of low-dose chemo and a DLI before achieving full remission.

Prior to diagnosis, I worked as a user experience researcher and strategist as well as a holistic wellness coach. I now focus solely on wellness and supporting others on their cancer journey as much as possible.

I am the husband & caretaker of Gulzar who was diagnosed with AML in September 2022.  Had a BMT on December 28, 2022, at Northwestern Medicine Hospital, Chicago after two chemotherapy when she was in full remission.

The induction and consolidation chemo had their own effects like nausea, vomiting, lack of appetite etc. But before the stem cell transplant, high-dose chemo was given to eliminate the residue of leukemia if any and this one had a clean sweep on my other good cells of hair. The donor cells settled within three weeks and the engraftment of new blood cells started giving me a new lease on life and I was discharged from the hospital.

Now I am on the 118th day ever since I got the non-related donor cells matching 10/10. During these 118 days, I had GVHD on my skin which was controlled by medication and creams. Now it's clear. I also had a CMV virus appearing and being controlled by oral pills. There was also a BK virus detected in urine and under control with pills. The post-transplant cancer drugs make the platelets and Hgb low at times for which I am being infused when detected low.

Now, I am doing much better than before and looking forward to the best days ahead. It will be a pleasure meeting so many fighters on a single platform. Best of luck everyone.

After 4 years of an incorrect asthma diagnosis, I was first diagnosed with Hodgkins Lymphoma in 2016. I did ABVD regimens for 6 months, followed by radiation. I was doing well. I took the year off teaching school, but continued teaching ballet at my ballet school, not missing a day, somehow.

After my year of treatment, I decided to retire early from teaching elementary school. I kept running my ballet school, though. It was great getting to dance more as I regained my health and life. Things were going well from 2017-January 2020, or so I thought.

In January 2020, we discovered I had relapsed, at Stage 4. ICE salvage chemo and some immunotherapy got me to being accepted at Stanford for an autologous stem cell transplant in July 2020, as Covid raged. Wow, was that an involved process and a tough time, eh! But surviving a stem cell transplant sure does make every day after that a precious gift. I returned to taking ballet classes the day after I was released from Stanford. Ballet and my awesome medical care and team saved my life.

My transplant was almost three years ago now. I am dancing so well, feeling strong, and loving teaching ballet classes again, as well. After losing my long hair three times, I now have the unruly curly locks I always dreamed of as a kid, haha.

I am so grateful for BMT InfoNet for these symposiums. As intense as it is to revisit what I have endured, it also reminds me in concrete ways of things I can do to give myself the best chance I have to live my best life. Thank you so much. I also did the symposium in 2021.

Hi! My name is Danielle, and I was diagnosed with Stage IV Non-Hodgkins Lymphoma at 14. I went through chemo, and was in remission almost a year and a half until I relapsed at 17. The recurrent NHL was more aggressive than ever, and I had to have a new treatment strategy including chemo, radiation, and an autologous stem cell transplant.

At the end of May, I will celebrate my 40th birthday, and at the end of August, I will be 23 years out from my transplant and being cancer-free!

I have attended the symposium before and found it very informative - and it was the first time I had ever met younger cancer patients and survivors in a peer support group setting - which changed my life.

I appreciate any opportunity I have to become more informed - so that I can be a better volunteer advocate for childhood and blood cancer patients. I also want to know as much as I can about different diagnoses and treatments - to better understand the patients I work with on a daily basis as a peer connection volunteer - so I can give them as much support as possible.

I was diagnosed and treated for Hodgkin's Lymphoma in 2018 at the age of 24. Then at the beginning of 2020, after finding out I was pregnant, at the age of 26, I was diagnosed with CML. I carried my son to 36 weeks and then had a BMT about a year after diagnosis.

I'm still dealing with side effects from treatment. I'm mainly hoping to learn if there are adoption grants for people who have had a BMT because my husband and I are planning to adopt a baby in the next year or two.

Diagnosed w diffuse large B cell lymphoma in 2015

Originally diagnosed with Polycythemia Vera in late 2017. By the summer of 2021, I had progressed to aggressive Myelofibrosis. Still a shock on how I went from RBC, HCT, and HGB counts that were too high, to counts that were too low in less than four years. Biopsies confirmed that my bone marrow was badly scarred, so I underwent a non-related donor stem cell transplant in January of 2022 at 69 years old. I was fortunate to have my transplant performed at UC Davis Medical Center. Good Doctors and staff, and the transplant center was only 20 minutes from my home. This made attending all of the many follow-up appointments and tests relatively easy.

The good news is that the transplant appears to have been successful. My blood counts are now within range, my marrow is healing, and biopsies report that the JAK2 V617f mutation is no longer detected in my marrow. I feel good and my life feels normal again. I am able to pursue activities I enjoy including attending concerts and movies, hiking, hanging with friends, and most important, alpine skiing. With some work, I was able to return to skiing at day +329 and skied 25 days this past winter in Colorado, Utah, and my home state of California. It helped that my stem cell doctor also skis and understood my passion for the sport and supported me in my quest to return to the mountains as soon as possible.

Although instances of GVHD have been mild and treatable so far, I feel that GVHD is like a stalker who is pursuing me in the dark. I need good, reliable information about GVHD, how to continue to have a successful life journey going forward, and not let the stalker catch up to me.

I was diagnosed with AML in 2004 at Penn. I went through two sets of chemos. Tried to garner enough cells for an autologous transplant, but was unsuccessful. I was in remission for less than a year. During this time my husband and I traveled to the Seattle Cancer Care Alliance for a second opinion. Good that we did, because I relapsed in 2005, Penn would not do a transplant, but SCCA would and we spent three months in Seattle getting a successful allogeneic stem cell transplant. I have GVHD that is a bother, skin, eyes, and lungs, but 17 years of living on March 24, 2023.

Hi! I’m Peter. Diagnosed with B cell ALL in December 2020 after more than a year of bad blood counts and fatigue and shortness of breath. 2 unsuccessful rounds of CVAD and a successful one of Blincyto got me to a BMT in April 2021, and I’ve just passed my second rebirthday in complete remission, even if there’s been a bit more drama along the way than I might have hoped.

I’m very interested in hearing how I can improve my quality of life and prognosis as I go forward post-transplant. Best wishes to all!

I am a 63-year-old woman that was diagnosed with AML in May 2020 during the early months of Covid 19. The doctors thought I might have Covid until it was discovered that my blood counts were wonky and I was diagnosed with AML.

After two rounds of Chemo, my body slowly went into remission, but since I was in AL and my son was in Utah, we made the decision to transfer me to Huntsman Cancer Research Institute in Salt Lake City, Utah. This is where it was decided I needed more chemo and a bone marrow transplant. Although two previous donors backed out, one stuck and on December 24th, 2020, I received my wonderful donor's gift of life and I was reborn on Christmas Eve.

I have been incredibly lucky and have had no signs of GVHD. I attend the Survivorship Symposium yearly to continue living and learning. I am incredibly grateful to all of the researchers, physicians, nurses and technicians at all levels that helped me along my journey.

I am a two-time 33-year survivor of Hodgkin’s Disease. Although treatment was difficult (radiation, then after a relapse, chemo, and an auto BMT), I am thankful to be alive, watch my sons grow, and enjoy my two grandsons!

I enjoy meeting other survivors and encouraging those starting on this journey.

Wanted to learn new and best practices of being a Post-BMT survivor...specifically best practices concerning GVHD

I was diagnosed in May 2022, and am sure like most of you; a shock that came out of left field. After chemo Plan A did not work, 3 hospitalizations for sepsis and pneumonia, and a bone marrow biopsy with no change (still 60% or more of plasma cells), it was on to Plan B. After 3 months of that chemo combo, another biopsy showed plasma cells were down to 10% - perfect time for auto stem cell.

It was more challenging than I expected. Now 48 days out, feeling better, but still battling fatigue but trying very hard to be patient and gentle with myself, saying this too shall pass. Hearing stories of long-time transplant survivors is a huge help.

My son superhero Jon went through a bone marrow transplant last June at the age of four. He has acute GVHD of the gut and skin stage 4 and now has chronic GVHD and I want to learn more. I want to help him and meet people who understand what I am going through

I am a 44-year-old large animal veterinarian living a normal life with my husband Daniel and my 3-year-old puppy Pola until August 2022, when I was diagnosed with Chronic Myeloid Leukemia in blast phase. I went through the BMT on December 2022.

I am a survivor and I am attending the Survivorship symposium to learn more about what I am going through as well as learning some of the struggles other people like me have.

Hi Everyone! My name is Debbie and I was diagnosed back in August of 2021 with AML with FLT-3 and NPM1 gene mutations. I had been working nights (RN) and was beginning to feel very worn down. I had other AML symptoms but tossed those to menopause or too much ibuprofen. Soon after I developed nausea and vomiting and pain in the area of my gallbladder and after several tests, the gallbladder was removed. However, when I woke up, I had a nasty parting gift, the AML diagnosis.

I was then admitted to the Blood and Bone Marrow Unit in Orlando and started on the induction chemotherapy along with intrathecal chemotherapy. A little over a month, I was able to go home in complete remission. During this time I had some more chemo to keep me in remission while I waited for the stem cell transplant.

I was readmitted in November for the allogenic hematopoietic transplant and was home two weeks before Christmas. This was an answer to prayer! Everything was going so well until I started with severe pain and diarrhea in February. I was then readmitted for three weeks for acute GvHD of the intestines. Once discharged, I continued with outpatient Infliximab infusions with high-dose steroids. After being tapered off, the diarrhea and pain kept coming back. So I was then placed on Jakafi. I just finished this course of meds and am looking forward to coming off of the others on May 5th!! Yay!

I have had an amazing team of doctors and nurses who watch me like a hawk. My husband, who was my 24/7 caregiver, was/is also amazing. I couldn't have made it without them. The passage that got me through this very difficult storm in my life is Isaiah 43:1-4. I would read it daily and then begin to place my name in it. My Lord brought me through this trial. My hands are open to whatever He sees fit, but I am glad that means I get to stay here a little longer.

My husband Rick and I have been married for over 34 years, we have three sons, two daughter-in-laws and six grandchildren. I'm not the only survivor, all of us are!

I love this forum and look forward to the speakers, especially those on GvHD, Memory/Cognition, I struggle with this, and the one on Neuropathy. It's great to meet you all!

Had my one-year anniversary this past December. Dealing with some GVHD issues and prednisone related side effects, including compression fractures of two vertebrae, and a few other things.

Diagnosed with Multiple Myeloma January 2022. Had an auto stem-cell transplant September 2022 and now on maintenance chemo.

Long-time trail runner and I went out with my local run club for a 5-mile uphill run in the rain the day before I went in for stem collection.

I am a 60-year-old physician, beekeeper, sailor and single mom of 3. I was in peak health in 2019 when I went to the dentist for a root canal, and they biopsies the bump in my gum- it was MCL. I had a year of chemo, then an auto SCT. I got a recurrence in my spine, so had radiation.

Now on zanabrutinib and back to enjoying life. One caveat- it ended up severely damaging my immune system, so I take IVIG now and had to stop practicing medicine- I tried to go back to practice, but hugged a baby who gave me RSV and put me in the hospital for a month and on oxygen for 6 months.

So I am carefully enjoying my life now. I can sail and keep bees (two activities that keep me away from people) but I cannot practice full-range family medicine - covid and other sicknesses are too great a risk and I need to be around for my kids.

Greetings from Alaska I was diagnosed with multiple myeloma in March 2021 and had a SCT and December 2021. I did not achieve remission but I am in great shape. The transplant gave me that second chance that I needed.

Multiple myeloma has caused me to slow down a lot. I worked in a gym and worked out sometimes twice a day for the last 15 years. My goal before multiple myeloma affected me was to work with special populations and help them to achieve good health through diet and exercise.

This symposium has been fantastic the information I’ve learned here will definitely assist me in moving forward.

I'm a 16-year survivor of matched sibling stem cell transplant for acute myeloid leukemia in 2007. I have chronic GVHD affecting scalp, eyes, mouth, lungs, and genitals and have long coped with the psycho-social-emotional aspects of survivorship and disability.

I have used art and humor for healing. I'm here to learn more and to share information.

My name is Alan and I live in Scottsdale Arizona. I’m a five-year survivor of a matched-related stem cell transplant. My brother Mark was my donor and I am forever grateful for his contribution to the continuance of my life. I have been well managed by a wonderful team of physicians, nurses and others at HonorHealth Bone Marrow transplant Center.

This journey has not been without its ups and downs, including side effects from prednisone which required both hips and my shoulders to be replaced due to avascular necrosis and multiple bouts of pneumonia for which I was hospitalized. However, I am thankful to be still on this earth and look forward to watching my grandchildren grow and continuing to share this life, with my wife of 42 years.

This is the third BMT symposium I have attended and I learn something new every time I attend the symposium. I wish all of you a noneventful journey post-transplant.

The picture I posted shows the completion of a cook of a tomahawk steak on my Traeger grill.