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Watch-and-Wait
Some people with MDS who do not have very low blood cell counts or other symptoms may not need to start treatment immediately. Some people can manage their MDS with their doctors for years or even decades using a watch-and-wait (observation) approach. By using the watch-and-wait method, your MDS specialist can monitor your condition with regular physical exams and blood tests. The watch-and-wait approach lets you avoid therapy's side effects until you need treatment. Treating MDS during this early stage has not proved helpful.
Don
My Uncle Don Parker is my hero, and my favorite uncle as well, who just never gave up on himself and others. And when he got sick and passed away with chronic lymphocytic leukemia (CLL) in 2001, I was inspired to do a Team In Training (TNT) marathon in Honolulu, Hawaii, that same year in December 2001. I was only able to do 15 miles then, but now I've done eight TNT half marathon events, and this summer it will be my 20th anniversary for doing TNT.
Michael
On January 3, 2020, I was diagnosed with Burkitt’s lymphoma(BL)with brain metastasis, and kidney and liver failure. During my four rounds of chemo, I had gone septic three different times, acquired nerve damage, and lost the ability to walk. After going into remission on August 6, 2020, I was tasked with relearning to walk. From April 2020 to January 2021. I was wheelchair-bound. Now as of Christmas 2021, I am walking on my own and in complete remission. The Leukemia & Lymphoma Society (LLS)gave my family so much help during my journey.
Esther
In November 2011, I was diagnosed with multiple myeloma and received a stem cell transplant in April 2012. After recovery, I continued medical care with my local oncologist.
In the summer of 2014, my lab results caused concern. After two bone marrow biopsies, I was diagnosed with acute lymphocytic leukemia (ALL) in January 2015. My doctor was shocked. The plan of treatment was chemotherapy and eventually a bone marrow transplant. Due to complications from chemotherapy treatment, the bone marrow transplant was off the table.
Karley
Back in 2017, my sister Karley was diagnosed with acute lymphocytic leukemia (ALL). It was a huge shock to her and our family as up until that point she was a healthy 25-year-old woman. She went through a tough battle, including losing her spleen, countless spinal taps, infections, etc. But in November 2017, she received a stem cell transplant (from me! I was a 100% match), and she entered remission. Well, fast forward to this year, Karley just got married to her partner, Allie, and is a labor and delivery nurse at Hartford Hospital in Connecticut.
Brandon
I was diagnosed with acute lymphoblastic leukemia (ALL) in 2019 a week before my birthday. My mom took me to the doctor for a routine checkup because I was feeling tired, sleepy, and did not want to eat. That day I was rushed to the ER where I was admitted to Children's Hospital New Orleans. After running bloodwork, my parents were told I had cancer. Our lives changed completely after that day. I spent months in the hospital, my mom stopped working to take care of me, and my dad was the heart and soul of the family, staying strong so we all could stay positive.
Levi
After months of being sick and being in and out of the hospital, doctors placed two adult-size chest tubes in Levi’s chest to clear his lungs of fluid. While placing the tubes, his surgeon found an orange-sized tumor in his lung. Hours later, he was diagnosed with T-cell acute lymphoblastic leukemia (T-ALL) at just four years old. He has endured countless treatments, side effects, and changes in the last two years. He has persevered and smiled all while fighting the "monster that tried to kill him." He has made an impact on others around him and has openly shared about his cancer battle.
Arlena
I’m 31 years old. At the age of 30 at the end of summer 2022, I was diagnosed with acute myeloid leukemia (AML). The experience I had and am still going through is a battle every day of my life. I was told I had to have chemotherapy, and I experienced hair loss, my skin changing color, and now have very bad stomach problems. I made it through 10 different chemotherapy sessions, and I got a phone call in December 2022 that I had a bone marrow donor. So, in January 2023, I started chemotherapy again, and on January 19, I got my bone marrow transplant. It was the second birthday for me.
Lena
In 2018, I had what I thought was a urinary tract infection (UTI). It ended up being a tumor in my bladder the size of a lime. It turned out to be diffuse large B-cell non-Hodgkin lymphoma (DLBCL). I ended up doing six rounds of R-CHOP chemo with Neulasta® and a month of radiation afterward. I am grateful to be alive but do have lingering side effects with chemo brain/memory loss, neuropathy in my hands and right arm, loss of taste for certain foods/drinks, and weight gain from prednisone.
Paige
On September 8, 2020, my youngest baby Paige was diagnosed with high-risk B-cell acute lymphoblastic leukemia (HR B-cell ALL) at Children's National Medical Center in Washington D.C. This diagnosis came after two weeks of visually noticing a change in Paige's behavior. By that point, she had been suffering from a high fever (102-104°) for two weeks after being misdiagnosed by Patient First Urgent Care. She had extreme fatigue, complaints of sore muscles, and literally not wanting to do anything. But this discovery happened by chance.
Lila
It’s January 11th, 2017, well past midnight, probably around 3 am. I am on the side of a mountain in Africa, 1000 miles away from home, in pitch black out, -20º with the winds, and I can barely feel my fingers. All I can see is the headlamp spot of light shining on the trail.
I think to myself, “Well, Lila, maybe this was not your best idea!” I look up and call my teammate in front of me, my best friend Dawn, and say, “Dawn, I am sorry I talked you into this.” She just looks at me, gives a knowing smile, then turns back to the path in front of us!
Gabriele
For approximately a year leading up to my diagnosis, I began experiencing various symptoms and was generally feeling unwell. About 3 months prior to diagnosis, my joint and bone pain started impacting my daily life heavily. I was struggling to lift my arms and walk normally. Of the many symptoms, the most extreme were breathing problems, extreme fatigue, headaches, and even passing out. I was admitted to Roswell Park Cancer Institute in April 2022 extremely neutropenic and anemic. At 26 years old I was diagnosed with acute myeloid leukemia (AML) and began chemotherapy immediately.
Hudson
Hudson entered the world on March 31, 2017. This is the day my heart left my own chest and was beating outside of my body. My whole world was immediately consumed by this little, perfect bundle of cuteness. As far as cancer risk goes, he didn’t really have any. He had a healthy infancy and toddlerhood, barely needing a Band-Aid. This is the case for so many children. In November of 2018, Hudson became a big brother to Violet. I can remember being in the studio for Violet’s newborn photos when the photographer had Hudson lay beside Violet.
Rob
I have this thing inside me called chronic myelomonocytic leukemia (CMML). It’s a rare form of leukemia that affects the blood and bone marrow. Only 1,100 cases are diagnosed a year in the U.S. Four out of a million. I do not want to be that special.
Relapsed and Refractory
Relapsed CLL is the term for disease that returns after it has been in remission for more than six months.
Refractory disease is the term for CLL that does not result in remission after initial therapy.
Lowering High White Blood Cell Counts
Some patients may have very high white blood cell (WBC) counts at the time of diagnosis. These elevated WBC counts can sometimes impair blood flow to the brain, lungs, eyes and other sites, and also cause damage in small blood vessels.
Immunotherapy
Immunotherapy is a drug therapy that stimulates the immune system. Interferon, a type of immunotherapy, is a substance made naturally by the immune system, but it can also be made in the laboratory. Interferon reduces the growth and division of cancer cells.
Targeted Therapy
Targeted therapy is a type of treatment that uses drugs or other substances to identify and attack specific types of cancer cells with less harm to normal cells. Not all cancers have the same targets. Each type of targeted therapy works a little bit differently, but they all interfere with the growth and survival of cancer cells. To find the most effective treatment, your doctor may run tests to identify the genes, proteins and other factors in your cancer cells. This helps the doctor choose the most effective treatment for you based on the specific factors of your disease.
CLL Staging
Doctors use staging to help them predict chronic lymphocytic leukemia's (CLL's) progression and develop an appropriate treatment plan. Two staging systems, the Rai system and the Binet System, have been used throughout the world. In 2016, a new prognostic model called the CLL International Prognostic Index (CLL-IPI) was released, enabling a more targeted management of CLL.
Staging systems for CLL take into account:
Claire
In February 2019, our daughter, Claire, was diagnosed with a rare form of acute myeloid leukemia (AML) just three short months after we celebrated her second birthday. We noticed a few discolored bumps on her body and assumed it was just a reaction to a new soap I had purchased, but then they began to pop up on other parts of her body.
Disease- and Treatment-Related Pain
People with cancer can have pain caused by the cancer itself, its treatment, or both. They may also have pain caused by other health problems that are unrelated to cancer (like arthritis or diabetes).
Increased pain does not mean that the cancer is getting worse, but you should always tell your healthcare team if you have increased pain.
It’s important to remember that no matter what the cause, pain can be treated.
Jan
After returning from a diving trip to Cyprus in November 2021, I started having headaches and sweating at night. Just two weeks later, I was diagnosed with acute leukemia and was immediately hospitalized. Two days later, I had my first round of chemotherapy as my case was pretty serious. Chemotherapy became a big part of my everyday life for the next three months.
After one week with no chemo, I started getting my life back, just partially. I made it thanks to amazing doctors, nurses, inner strength, positivity, and healthy food. Yoga breathing helped a lot too.
Thomas
I was declared to be in remission from acute lymphoblastic leukemia (ALL) on Sept 1, 2015. To celebrate one year of remission, I biked from Waukesha, WI to Port Washington, WI, a total of 104 miles round trip.
This photo is from the deck of Smith Brothers in Port Washington, the half way point of the ride. I was joined by one of my caregivers, Maria, of St. Luke's for the first 25 miles of the ride. After the initial round of chemo in 2015, I couldn't even bike 2 miles.
Dr. Carroll
William Carroll, M.D., is the leader of a five-year LLS Specialized Center of Research (SCOR) grant.