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Survivorship

Use this Survivorship Workbook to collect all the important information you need throughout diagnosis, treatment, follow-up care and long-term management of a blood cancer.

Healthcare for Undocumented Persons

In most states, undocumented immigrants are not eligible to enroll in Medicare, Medicaid or Children’s Health Insurance Program (CHIP), or to buy Marketplace health coverage. There may be limited options for coverage for emergency services; however, cancer treatment may not constitute emergency care.

COVID-19 vaccine hesitancy among blood cancer patients

Treatment

In general, the goal of treatment is to destroy as many lymphoma cells as possible and to induce a complete remission. Complete remission means that all evidence of disease is eliminated. Patients who go into remission are sometimes cured of their disease. Treatment can also keep non-Hodgkin lymphoma (NHL) in check for many years, even though imaging or other studies show remaining sites of disease. This situation may be referred to as a “partial remission.”

Maggie

When I was 8 years old, I was diagnosed with T-cell acute lymphoblastic leukemia (T-ALL). I shocked the doctors with how I was still alive because I had a mass the size of a grapefruit on my lungs and masses all over my other vital organs. When I was admitted to the hospital, they got chemo going everywhere they possibly could ― in my port, my arm, my foot. I was then put into a medically induced coma for about two weeks before waking up. After a while in the ICU, I was sent down to the main floor for hematology/oncology.

Sue

My story begins with a routine yearly mammogram in April of 2020. I am currently a 25-year breast cancer survivor. So, regular mammograms are just a part of my yearly routine, a simple procedure that I endure yearly with no big issues to speak of ― until now. During the mammogram, they noticed enlarged lymph nodes. My doctor thought it was no big deal, and we would watch them for two weeks and then do another mammogram. I wasn’t worried. She explained that I could be fighting an infection or that I just had large lymph nodes as a normal thing.

Madeline

Being in a very close-knit family, we were devastated upon learning of our sister Madeline’s diagnosis of AML.  There were 4 of us girls and all 3 of us wanted to do anything to help our sister survive.  Our biggest challenge was staying positive and offering her and her family support. The 3 of us were tested and I was her perfect match.  I was overjoyed to be able to do this for her. Although my other sisters felt let down that they weren’t,  we were all constant support through her journey.

Jennifer

Jennifer of Hayward, CA, was diagnosed with myeloma (MM) in 2008. During this process, she endured a year of intense chemotherapy, followed by an autologous stem cell transplant where her own stem cells were harvested and reintroduced into her body on January 8, 2010.  This resulted in an extended hospital stay followed by radiation treatments.  She is currently in remission and remains under doctor’s care. After her diagnosis and treatments, she wanted to give back to others living with the disease.

Gabby

Her name is Gabriella Sarai. We call her Gabby! She is a feisty little four year old. She has been running circles around her two older brothers, her dad, and me since she was able to walk. She is the baby and the only girl. She gets away with a lot.

Nate

On Monday July 17, 2017 my world got flipped upside down. I got out of work to bring my son, Nate to the ER, he had a bad stomach ache, my thoughts were he might have appendicitis. When I got him to CCMC, he was in extreme pain and they took him in right away. Initially the docs thought the same, they did a bedside ultrasound to find the appendix and it could not be found. A few hours passed and I'm asked to step out the room. At that moment I knew that my life would never be the same... My son, my life, my everything was sick and this time a kiss and band aid wasn't going to fix it.

Art

I was living in San Jose and had gone walking with a friend in a local park that followed the stream. It was December 15, 2006. Tom noticed that I had difficulty climbing up the five-foot stream embankment that the path went through. I myself didn’t recall this. Ten days later while visiting my wife’s children in Fairfax, the children and I went on a trail as we always did on Christmas morning. I found myself badly winded and returned to their home while they continued the hike. Then I noticed that I was not attracted to the Christmas feast.

Allison

During the start of the pandemic, my boyfriend began working out from home with all the gyms being closed. While working out, he discovered a lump under his arm. We both waved it off as nothing to worry about, but he still asked his doctor about it just in case. His doctor wanted him to get it biopsied. I dropped him off for surgery, still naive that anything would actually be wrong. He wasn't showing symptoms, he was active and healthy, plus he was young. “We” were young. We were in love, talking about getting engaged, and just moved in together. What could go wrong?

Landon

My cancer journey began on June 24, 2018. A month before that day, I'd experienced chest pains, night sweats, and shortness of breath. After scheduling a doctor's appointment, my primary physician determined that it was merely an upper respiratory infection. For a week, I took the medicine prescribed by my doctor, hoping that I would soon feel well again. With little to no signs of improvement, I scheduled another appointment for Monday, June 25th. We didn't make it to that appointment, because on June 24th, I lost oxygen and passed out.

Donna

I was shockingly diagnosed with a monoclonal spike in November 2019 (six months after the unexpected death of my mom). Treatment was started in June 2020. I went to Mt. Sinai NYC where they have a team that just deals with multiple myeloma (MM). I am grateful that a couple of people recommended I go there. They treated me with four drugs, one of which wasn’t available at my local oncologist. The regimen was Velcade, Revlimid®, daratumumab, and dexamethasone. I had this induction therapy until my stem cell transplant in March 2021.

Mario

I’m a very simple guy. I’ve worked in the financial industry for almost 10 years, however, my passion is cooking. In 2019, I had just lost 225 lbs. I was preparing to go back to culinary school.

There was a family incident in March of that year, and it put a lot of stress on us. I kept developing a strong workout routine to really help me get on the right track.

Elissa

Ten years ago, my mother-in-law was diagnosed with stage 4 non-Hodgkin lymphoma (NHL). She has since been deemed cured and has had no recurrence since her successful treatment. Some of her medicines were funded by The Leukemia & Lymphoma Society (LLS). We spent years racing for Team In Training (TNT) to fundraise for LLS. 

Lisa

On my ex-husband's 40th birthday, I asked him to take me to the hospital. I'd had elective surgery a week prior, and I knew something was terribly wrong. I felt awful, it hurt to breathe. In emergency, we learned I had acute myeloid leukemia (AML) and bilateral pneumonia. A triple lumen was put in so I could receive antibiotics, blood transfusions, and chemo at the same time. I wasn't expected to make it through the weekend, and my entire family traveled to Dallas to be with me. Through a series of events, I was fortunate to be cared for by Dr.

Hailey

My mother and I being diagnosed with stage II Hodgkin lymphoma (HL) only six weeks apart from each other was not what I anticipated receiving for my 16th birthday. Braces, being my homeroom representative, volleyball tryouts, and getting my driver's license are the things I thought I would be navigating at this time. Instead, I spent my 16th year in pediatric oncology, receiving treatment at the same time my mom was receiving care in adult oncology.

Suesan

During caregiving for my partner, Dil, cancer has acted as a proctor of lessons we would have rather gone without. I have become more aware of accessibility issues because the chemotherapy and radiation treatment combined with overwhelming doses of steroids led to him having spinal fractures which impeded his mobility. Now when we go to a movie, are traveling, or generally getting around, I come armed with a pillow for his chair, he with his cane, an eye trained for impassable curbs or spaces that he can't comfortably navigate.

Hodgkin Lymphoma Subtypes

The World Health Organization (WHO) divides Hodgkin lymphoma into two main subtypes. They are:

Refractory and Relapsed

Almost all myeloma patients will experience relapse (the cancer returns after a successful course of treatment) and/or the disease will become refractory (the cancer does not respond to treatment). The choice of a treatment regimen at relapse is affected by many factors including previous therapy, rate of relapse, patient health, and genetic abnormalities. 

Stem Cell Transplantation

An allogeneic stem cell transplantation is a treatment that uses stem cells from a healthy donor to restore a patient’s bone marrow that is damaged or diseased after receiving high doses of chemotherapy and/or radiation therapy. Allogeneic stem cell transplantation remains the only potential cure for MDS. 

Essential Thrombocythemia

• Is a rare blood disease in which the bone marrow produces too many platelets. High numbers of platelets may lead to a thrombus, a blood clot that forms in a blood vessel.

Your Treatment Team

Oncologists and hematologists are specialists who treat persons with leukemia, lymphoma, myeloma, myelodysplastic syndromes and myeloproliferative diseases. Pediatric hematologist oncologists treat children, adolescents and some young adults who have blood cancers. The oncologist or hematologist-oncologist coordinates a treatment and follow-up plan that involves other doctors as well as nurses, social workers, case managers and nutritionists.

Talking with Family, Friends and Children

Many people find it best to be honest with family and friends. By confiding in loved ones, you give them the chance to offer their support. It's true that some of your relatives or friends may not know what to say or do. But most do want to be supportive.

Consider "appointing" a willing family member or friend to be your "press secretary." He or she can be responsible for regularly letting others know your health status so you can focus on your treatment and recovery.