Search Results
Teri
I was first diagnosed with a myeloproliferative neoplasm (MPN) called polycythemia vera (PV) in 2012. I must admit, I was a bit overwhelmed when they said the “C” (cancer) word and then the “R” (rare) word. I have been living with a handful of rare diseases for some time and now a rare cancer. At that time, there was limited information. I started to research MPNs, attended some conferences, talked with a social worker (Amy is my hero) at The Leukemia & Lymphoma Society (LLS), and connected with the MPN Research Foundation and MPN Advocacy Foundation.
Celeste
Celeste is my daughter; she was 10 years old when she was diagnosed with Hodgkin lymphoma (HL). She had a cough for about two months that just would not go away, and we thought it was her seasonal asthma coming back, so we made an appointment with her pulmonologist. At the appointment, her doctor paid careful attention to everything we were saying and ordered a chest X-ray that showed a large mass in her chest.
We went straight to Boston Children's Hospital and then on to treatment at The Jimmy Fund.
Fely
Hello, my name is Fely Agustin, I am 38 years old and a mother to two teenagers. One is going to be a freshman in college and another a freshman in high school. I am married to a wonderful husband of almost 17 years. I was diagnosed on May 6, 2015 with Waldenstrom Macroglobulinemia (WM).
Steve
I was diagnosed with stage 4 follicular lymphoma on May 16, 2018, a date I will never forget. The cancer was already in my bone marrow and when I asked my doctor how long would I live if I did nothing, she said about 90 days. Dr. Amy is scary smart and I told her I needed to attend my son's wedding in a few months; let's see if you can get me there, even if it is in a basket. I started R-CHOP chemo treatments almost right away. The side effects, discomfort and pain were a 9 everyday. Shockingly, for the weekend of the wedding my pain & discomfort dropped down from a 9 to a 1.
Louis
Louis had been on a journey to achieve greater health. For 10 months, he had been on a healthy diet and exercise program and had lost 80 pounds. His doctors were pleased and he was able to stop taking most medications he was on. However when he went for an annual physical he was diagnosed with chronic myelogenous leukemia (CML) at only the age of 33.
Carley
Hi, my name is Carley and I am an angel. I was diagnosed with acute myeloid leukemia (AML) in 1995 and I died in 1996. I was 3 ½ years old when I died and I tried so hard to live, but AML was just so terrible and there weren’t a lot treatments back then. My parents were so sad when I went to heaven. I’m still 3 ½ years old because up here in heaven we stay the same age and none of us are sick anymore. It’s truly wonderful up here, but there are still way too many of you coming up here from earth because of AML.
Matthew
In September, 2012, Dr. Matthew Levine noticed that his regular exercise routine and rotations in the ER were more physically draining than usual. When Dr. Levine realized he could no longer run a mile like he used to with ease, he contacted his physician.
In the interim, Dr. Levine began developing bruises on his body and a throat infection. He knew that after the testing, the diagnosis would not be good. On Monday, September 17, 2012. Dr. Levine learned he had acute myeloid leukemia (AML).
Russ
(As told by Russ Parker’s wife Karen A. Parker) In the fall of 2004, Russ was looking forward to a surfing trip to Fiji with his son Rusty and a group of good friends. He was a real estate developer, surfer, soccer coach, swimmer and runner.
Jared
At 31, I was diagnosed with acute myeloid leukemia (AML). As my career was finally taking off as a celebrity makeup artist and I finally felt “grown-up,” it came to a screeching halt. My life became cancer and getting better. Although I struggled with the isolation, I connected with many other patients via social media.
Lauren
At the age of 33, I was diagnosed with acute myeloid leukemia (AML). I immediately started undergoing treatment which initially consisted of intense induction chemotherapy followed by consolidation chemotherapy and then a haploidentical stem cell transplant. My 64-year-old father was my only donor option as I did not have any matches on the national registry. My two sisters were less than half matches, and my mother’s history of having had a stem cell transplant herself precluded her from donating.
Logan
July 3, 2021, was the day that my life changed forever. I had been dealing with odd symptoms for months, and after multiple visits with dismissive practitioners, I finally had the ear of a doctor who believed me. A tumor located in my mediastinum was discovered via a CT scan. This news was devastating. I was due to be married in one month and how could someone who is just beginning her life possibly have something like this happen?
Cheryl
When I first found out that I had multiple myeloma (MM) 4½ years ago, I was shocked. I was in the hospital for a broken leg. I had twisted my leg, and it was badly broken. While I was waiting for surgery, a doctor came into my room and began to talk to me. She explained to me that my leg had broken because I had cancerous bone lesions. As I listened to her, I felt my heart sinking, I had a broken leg, not cancer. It didn't seem possible. Cancer was the last thing I would have imagined. I went through radiation, chemo, and cell replacement therapy.
How to Enforce Your Legal Rights
If you suspect that you are being treated differently at work because of your cancer history, consider an informal solution before leaping into a lawsuit. You want to stand up for your legal rights without casting yourself as a troublemaker.
If you face discrimination, consider the following suggestions:
Halley
My story with cancer began long before I was diagnosed this year at 33. When I was 4 years old, my 18-month-old sister, Hannah, became too tired to play with me. As a child, I didn’t know what was going on, but something seemed wrong. My mom started taking her to doctor after doctor to find out what was happening. It wasn’t until we visited my grandmother in Florida that she had to go to the ER, and our family got the concerning news that she may have cancer.
Melinda
I am currently 30 years old and was diagnosed with non-Hodgkin lymphoma (PMBCL) when I was 27, almost 28 years old.
I was pregnant the day I was diagnosed, luckily 39 weeks, and ended up giving birth the same day I found out I had a massive tumor in my mediastinum. I was biopsied the next day and had to leave my 5-day-old baby and 2-year-old to go to the emergency room for a life-threatening emergency called svc syndrome.
Amanda
My name is Amanda, and I am a stage 4b classical multicellularity Hodgkin lymphoma (CHL) survivor. It all started after spring break of my junior year of high school. I was on a ski trip when I noticed my feet were more itchy than normal. I figured it was from the boots. After coming home and realizing it had gotten worse, we went to the pediatrician. She looked at the bruises and scratch marks on my legs and diagnosed me with scabies. I did the whole treatment for that, and obviously, it didn’t work. A week or two later. we went back and had some basic bloodwork done.
Ron
This started 11 years ago when my mom was first diagnosed with lymphoma. I wanted to do more and saw the purple team always out running events I was entered into. I wanted to join and did in 2010. I have run in countless events over the years with Team In Training (TNT). Then my mom passed in May of 2017 while I was training for the Walt Disney World event. I was crushed and continued to run in her honor. My mom was supposed to be at the finish line at my 2018 Walt Disney World Marathon Weekend, and it did not happen.
Heriberto
I was diagnosed with Burkitt lymphoma (BL) on Friday the 13th ― August 13, 2021, to be exact ― seven months after being married, three months after my wedding reception, and going on my honeymoon.
Kaitlin
I moved to Chicago in May 2022. I had recently finished my joint PhD in Social Work and Psychology from the University of Michigan and was offered a job as a People Analytics Researcher at Google. I loved the city and enjoyed frequent runs and cycling rides along Lake Shore Drive. In mid-July, I started noticing some symptoms that concerned me ― difficulty breathing when I was exercising, intense chest and back pain, spider veins on my chest, puffiness in my face, and fatigue.
Carly
November 25, 2022 ― the worst day of my life, the day I received my official cancer diagnosis, stage IV Hodgkin lymphoma (HL).
Leading up to this day, I was always a healthy, active young lady. I was 23 years old and eager to start this next phase in life. Exciting things were happening. We were fairly new homeowners, I had just changed jobs/occupations, and I married the love of my life in October.
Michael and Ashlee
Michael and Ashlee have a unique mother-son relationship. They share a podcast about their cancer journey. They have a website and a YouTube channel, and, yes, they even do rap songs about their hospital experiences together.
Relapsed and Refractory
Some patients have residual leukemia cells in their bone marrow even after they receive intensive treatment. In these cases, the disease is referred to as being “refractory” (or “refractory ALL”).
Other patients achieve remission but later have decreased numbers of normal blood cells and a return of leukemia cells in their bone marrow. This is referred to as a “relapse” of the disease (or “relapsed ALL”).
Treatment
It's important that your doctor is experienced in treating patients with chronic leukemia or works in consultation with a chronic lymphocytic leukemia (CLL) specialist. This type of specialist is called a hematologist oncologist.
Types of CLL TreatmentCurrent therapies do not offer patients a cure for CLL, but there are treatments that help manage the disease. Doctors use several types of approaches and treatment for adults with CLL, some at different stages:
Stem Cell Transplantation
For certain patients with CML, allogeneic stem cell transplantation (the infusion of donor stem cells into a patient) is their best treatment option. However, this type of transplant can cause serious or even life-threatening complications and side effects. In addition, it is often not a good option for older patients or for patients who have other health problems.