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Relapsed and Refractory

Some chronic myeloid leukemia (CML) patients still have leukemia cells in their bone marrow after initial treatment with a tyrosine kinase inhibitor (TKI). "Refractory" is the term used to refer to a disease that has not responded to the initial treatment. Relapse is the term used to refer to the return of a disease after a period of improvement. 

TKIs used for "initial" or first-line treatment for chronic phase CML include:

Treatment

It's important that your doctor is experienced in treating patients with hairy cell leukemia or works in consultation with a hairy cell leukemia specialist. This type of specialist is usually called a hematologist oncologist.

For many people with hairy cell leukemia, starting treatment helps them focus on moving ahead and looking forward to their disease's remission.

Several types of approaches and treatment are used for adults with hairy cell leukemia, some at different stages:

Treatment

Every patient’s situation should be evaluated individually by a hematologist-oncologist who specializes in treating MDS and who will discuss the disease subtype, prognostic factors and treatment options with the patient. It is also important to seek treatment at a center that has experience in treating MDS. 

Doctors use several types of approaches and treatment combinations for MDS:

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. 

Managing Side Effects

Work closely with your doctor and cancer care team to prepare yourself with information about what to expect and how to cope with side effects.  For some patients, side effects may last well after treatment is completed or may be permanent. For most patients, side effects are temporary and go away when the body adjusts to therapy or once treatment ends. On the other hand, some patients suffer symptoms that may require hospitalization until they subside.

Reactions to treatment vary from patient to patient. Reactions also vary depending on:

How to Find a Treatment Center

A number of resources are available to help you find a treatment center. Your primary care doctor may be able to provide a referral or you can use doctor and insurance referral services.

The National Cancer Institute (NCI) supports a national network of cancer centers. Each center must meet specific scientific, organizational and administrative criteria. See a list of NCI-approved cancer centers.

The following organizations can also help:

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.

Talking With Members of Your Oncology Team

Ask your oncology team about the fertility effects of your treatment. By having this information before treatment begins, you can consider the options most likely to preserve your fertility. You can also ask for a referral to a fertility specialist to help you understand and explore your options. Fertility specialists include:

Pregnancy and Breastfeeding

Most people of childbearing age who have been treated for cancer and are able to conceive can go on to have low-risk pregnancies and healthy babies. Patients should be able to become pregnant if treatment did not affect their ovaries or uterus, and there are no other medical issues that may impact fertility. Before you try to become pregnant, talk with your treatment team about your medical readiness for pregnancy. You may also want to have a fertility assessment by consulting with a doctor called a “reproductive endocrinologist.”

Bereavement

Losing a child is possibly the most difficult thing a parent can experience. Grief can affect each person emotionally, physically, cognitively and behaviorally. Many people express grief in an outward way; for example, crying, a lack of energy or trouble sleeping. Others, on the surface, may not seem to be grieving. Instead, these people process grief internally. Their grief may go unrecognized and unacknowledged. Be aware that grief is personal and specific to the person. Try not to make judgments about how you, your co-parent or others process the loss of your child.

Side Effects

Most ALL treatment side effects are temporary and subside once the body adjusts to therapy or after the therapy is completed. If side effects become severe, children may need to be hospitalized.

Side effects common to ALL and its treatment include:

Nausea and Vomiting

Many cancer treatments can cause nausea and vomiting. Nausea, also called feeling “queasy” or “sick to your stomach,” is that unpleasant feeling you have when you are going to throw up. Vomiting is throwing up what is inside your stomach through the mouth. Nausea and vomiting can happen together, or one can occur without the other. The severity of nausea and vomiting varies among patients. Sometimes these side effects improve as you adjust to treatment, and most side effects go away after treatment ends.

Diarrhea and Constipation

Diarrhea and constipation are common side effects of cancer treatment. The severity of diarrhea or constipation varies among patients and depends on the type of treatment you receive. Sometimes side effects improve as you adjust to treatment. Most side effects go away when treatment ends.

Tell your healthcare team if you are experiencing new or worsening diarrhea or constipation. Do not take over-the-counter medications without talking to your doctor.

Follow these tips to manage diarrhea:

Disease Complications

In medicine, a complication is a medical problem that occurs during the course of a disease or after a procedure or treatment. Possible complications of ET include:

Alice

In March 2023, while visiting my daughter and son-in-law in San Francisco, I saw the Climb2Cure trip to Patagonia listed on The Leukemia & Lymphoma Society's (LLS) website. They have always talked about their backpacking trip to Patagonia in Argentina and Chile as their favorite hiking trip ever. This event would be my 16th LLS fundraising adventure since going into remission from multiple myeloma (MM) in 1999. 

Monica

I am currently 23 years of age and I’m from South Africa.  This is my story of my journey with Hodgkin lymphoma. This is a story of hope, a story of victory and a story meant to inspire those affected to keep holding on.  Towards late October of 2019, I noticed a bump protruding on my chest. It was a very hard and rigid bump which didn’t move. I was still in university completing my post-graduate diploma in accounting, so I didn’t think too much about it, my main stress was to complete my degree.

FDA Broadens Treatment Options for Relapsed/Refractory Multiple Myeloma

Big Climb

No matter where you live, no matter what your connection to cancer may be, you can step up to take cancer down by being a part of The Leukemia & Lymphoma Society’s Big Climb.

Take on a new challenge, by climbing to the top of iconic buildings, all while raising critical funds towards The Leukemia & Lymphoma Society’s mission to cure leukemia, lymphoma, Hodgkin's disease, and myeloma, and improve the quality of life of patients and their families.

Bryon

In 2017, during a pickup basketball game at the local gym, Bryon Daily was beginning to feel his age, playing against 20-year-olds. A former college track athlete in his early 50s, this fatigue felt different. He also fractured his finger during a routine pass in the game.     Bryon’s primary doctor at Kaiser ordered labs including blood and urine, that showed impairment in his protein levels and referred him to a urologist then a hematologist.

Allison

In May of 2020, shortly after the first lockdown for COVID-19, I noticed a small lump on the side of my neck. Living in Southern Indiana during the spring, I usually get allergies from the fields, so I thought I just had a swollen lymph node from that. Considering I was only 15 at the time, the last thing that ever crossed my mind was the possibility of cancer. But after a month, the lymph node had yet to go down and had done the opposite. It slowly progressed and eventually moved to the other side of my neck.

Ed

Like many who get diagnosed with multiple myeloma (MM), it comes out of nowhere. For me, it was mysterious aches and pains that crept up quickly. An alert doctor ordered tests, and eventually, MGUS, the precursor of MM, was first diagnosed. Within a month, MM was confirmed. MM is a blood/bone cancer that can affect the entire body.

For the next six months, I was involved in many tests, along with drug treatments including chemo. I had a stem cell transplant and have generally had a complete response.

Chris

In 2008, my primary doctor noticed that my white blood cells were high (12,000 range) and referred me to a hematologist. The hematologist decided to "wait and see" for a while. From 2008 to 2018, we watched as my white cells slowly grew from 12,000 to 207,000. The oncologist then prescribed and 8-hour infusion of Rituxan. As I sat in the recliner chair with needle in arm, I got several violent reactions from the Rituxan and they pulled out the needle. The doctor told me that I needed a drug called  Imbruvica (Ibutrinib). I was

Alesia

In November 2021, I experienced my first panic attack while at work. I went to the urgent care clinic, and they tested me and said I was good and might be experiencing anxiety. At that time, being a teacher in my school was hard and overwhelming, and I started taking anxiety medication. Later on in the school year, I continued to experience COVID-like symptoms but was always negative. I did eventually get COVID, but I was still healthy on paper. While all of this was going on, I was also encountering fatigue that I couldn't explain and blamed it on my job.

Phil

My sweet and wild 3-year-old son, Phil, was diagnosed with B-cell acute lymphoblastic leukemia (B-ALL) in the midst of the holidays in 2019 on December 27. Phil began treatment right away, following a 2½-year treatment protocol for his leukemia type and risk level. With every hospital visit, chemotherapy infusion, medication to take, procedures in the OR, or “job” he was told to do, Phil smiled, he laughed, and he cooperated (with a little encouragement and bribery of course!). There really was something so special about him.

Paul

I have been very active with The Leukemia & Lymphoma Society (LLS) for over 20 years including serving on the Wisconsin Chapter Board and Leadership Development Committee, fundraising for virtually all of the campaigns, patient mentoring, and advocacy leadership. When sharing my story and motives for involvement in “the early years,” I always qualified it by stating that I was motivated not to help myself but to pay it forward and hopefully contribute to improving the quality and quantity of life for future patients and families.