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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.
Thomas
I was originally diagnosed with acute myeloid leukemia (AML) in November 2008. I went through one induction chemo and four rounds of consolidation chemo and then I was considered cancer free.
In February 2017, my worst fears were confirmed when I was diagnosed with AML for the second time. This time, it took two induction treatments of chemo to be declared in remission. I was then given a month off and went back to the hospital for more chemo and a bone marrow transplant. The last chemo nearly cost me my life. My kidneys and liver were shutting down.
Thomas
I was diagnosed with acute lymphoblastic leukemia (ALL) on February 17, 2015 and, subsequently, spent 56 nights inpatient at St. Luke's Hospital in Milwaukee being treated by a truly wonderful nursing team on the 12th floor. On July 28, to celebrate my final four-day inpatient chemotherapy treatment session, I biked 19.5 miles from our home in Brookfield, WI to St. Luke's. I felt so good to overcome the bite of ALL and continue to do one of the things I love to do ... Biking.
Armaan
In January 2014, Armaan celebrated his 5th birthday. He was tested for anemia a few days later at the urging of his pediatrician as he looked a little pale. Our world was rocked several hours later when the pediatrician called to notify us that Armaan had leukemia.
Armaan was immediately admitted into Lucile Packard Children's Hospital in Stanford where he had a PICC line inserted into his arm and started his first round of chemotherapy. He is now in remission although he faces two more years of treatment to help ensure he doesn't relapse.
Nathan
Nathan is a young, T-cell lymphoma (TCL) survivor. He just rang the “end of treatment bell” a couple of months ago. His dad, Andy, is a member of The Leukemia & Lymphoma Society’s (LLS) Minnesota/North Dakota/South Dakota board and a major donor to The LLS Children’s Initiative through their family foundation’s fundraising.
Freia
Freia was diagnosed with acute lymphoblastic leukemia (ALL) at the age of 8. She and her family had just landed in Denmark for a family vacation when her parents noticed something wasn't right. After several trips to the hospital, they drove to Sweden where Freia’s grandparents live. It was there that her family heard those awful words, “Freia has cancer.”
Victor
Our father Victor was diagnosed in 1998 at the age of 30 with Burkitt non-Hodgkin lymphoma (BL). He was living in Los Angeles, California, at the time and had just gotten engaged to my mother, Debra. He began not feeling well and was diagnosed with a small mass in his stomach. He was told it was non-Hodgkin lymphoma (NHL). He contacted The Leukemia & Lymphoma Society (LLS), and in coordination with MD Anderson, he went to Texas, and a protocol was set in motion to fight this disease.
Jeremy
Lucy was diagnosed with acute lymphoblastic leukemia (ALL) when she was 32-weeks pregnant with our son Watson. She underwent two rounds of chemo while our son was inside her. After giving birth to our healthy, 4 lb., premature baby, she immediately went back to treatment with more rounds of chemo and a bone marrow transplant. After the transplant, she had to stay in 100 days of isolation where she could only see our newborn son through a glass window and wasn’t able to touch him due to her weakened immune system.
Melody
In November 2021, at just 24, Melody was diagnosed with stage 2 Hodgkin lymphoma (HL) after experiencing severe symptoms like profuse sweating, significant weight loss, and intense itching for the previous six months. After two biopsies and CT and PET scans, a tumor the size of a baseball growing quietly was discovered in her chest. She started treatment at City of Hope, enduring eight rounds of chemotherapy and six rounds of an immunotherapy trial. Her final treatment was on June 1, 2022, and she has been in remission for two years.
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.
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.
Don
Like so many individuals diagnosed with blood cancer, I had zero thought that I might be ill, much less with a disease that could take my life.
I had signs and symptoms that something wasn’t quite right in my body, annoying things like shortness of breath, lightheadedness, and fatigue. However, nothing registered in my head until after my diagnosis.
It’s September 2005, and I am pretty much invincible, bulletproof! I could, in fact, leap tall buildings in a single bound! Yes, in my mind I was Superman!
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:
Team In Training Participant
I joined Team In Training (TNT) in 2012, when I decided I wanted to train and run my first half marathon. Some of my friends had told me about their success with the program, and while I didn't have a personal connection to The Leukemia & Lymphoma (LLS), it was obviously a worthy cause and I felt I could handle the fundraising aspect.
I loved the experience; the training cycle, the coaches, the teammates, and even the fundraising. And they got me across that first finish line.
Amber
I was diagnosed with stage 3 Hodgkin lymphoma (HL) right before my 27th birthday. I had just finished my Master’s degree and was engaged to get married the same year. I was a special education teacher and wasn’t sure what to do with the news.
Vickie
I was diagnosed in 1974 at the age of 24 with Hodgkin lymphoma (HL). I had never even heard of it. The doctors did not know if I would survive as it was very aggressive. I had exploratory surgery (CAT scans and MRIs did not exist then as far as I know) and five weeks of radiation (I still glow in the dark, saves on night lights!!). Other than a couple of "unusual lymph nodes" over the years, I have been cancer-free. I went on to have two more great careers and was happily married for the first time at 49.
Miranda
A little over a year ago, I finished a treatment that saved my life and gave me purpose. In October 2016, I was diagnosed with stage IV of Hodgkin lymphoma and was fortunate enough to receive medical care that allowed me to conquer my cancer journey.
Kathie & Dave
Dave and I have been a part of The Leukemia & Lymphoma Society (LLS) since 1998. I can’t even remember how many Team In Training events we’ve done. We have both done at least one a year if not more since Michael, our son, was diagnosed.
This picture explains it all. Michael was 5 years old when he was diagnosed and of about 10 kids going through treatment with him at the time, I think only he and another are still here today. I know the statistics should be better but that’s the reality for us.
King
King has a rare combination of a blood cancer called leukemia (high risk) and G6PD which is an incurable, lifelong blood disorder. His treatment plan is 3 1/2 years of daily chemotherapy. He is up to 75 pills per month, and this does not include intravenous or spinal chemo.
Unfortunately, as he gets older, the amount of chemo and medication he has to take will increase. He is three years into treatment, and has experienced several severe complications throughout this time.
Luis
I used to donate blood at least three times a year. I did it as a way of helping others and never realized it would one day lead to me being diagnosed with myelodysplastic syndrome. But that’s exactly what happened in 2006, when a case of anemia kept me from donating blood that year.
Wendy
I am a 3-time Hodgkin lymphoma (HL) survivor. I underwent two stem cell transplants. The first transplant was my own stem cells, the second transplant was a donor transplant. My baby sister was my donor (she was a 6/6 match); I was very lucky. I underwent three years of radiation and chemotherapy and have been in remission now 12 years. Since then, I have gotten involved with The Leukemia & Lymphoma Society (LLS). I first started by creating a fashion show to raise money for LLS.
Charlie
At two and a half years old, Charlie was diagnosed with acute lymphoblastic leukemia (ALL).
Soon after being diagnosed, she underwent surgery to insert a port-a-cath so she could receive chemotherapy treatments and make route blood work easier on her. Chemotherapy treatments were extremely hard on her little body and she refused to walk. She had neuropathy from the treatments.