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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.
Types of MDS TreatmentDoctors use several types of approaches and treatment combinations for MDS:
Stem Cell Transplantation
Allogeneic Stem Cell TransplantationAn 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
Survivorship WorkbookUse 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
PregnancyMost 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.
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.
DiarrheaFollow these tips to manage diarrhea:
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Lauren
It was last July, and I was just a regular Jersey girl. I was a 41-year-old wife, mother of two, physical therapist assistant just living a regular, normal life, or so I thought. I was just returning from a vacation in Puerto Rico, celebrating my brother's 50th birthday, when I fainted on the plane and had to have an emergency visit upon landing.
Lindsey
On Monday, February 8, I found out that I was pregnant. It was very early, but there it was two lines. On Wednesday, February 10, I told my parents and mother-in-law, and we were all so excited, so excited that on Saturday, just for fun, we went to BuyBuy Baby. On Sunday, February 14, I went to a nice Valentine’s dinner with Ethan, and when we got home, I noticed a tiny drop of blood on my underwear. By Tuesday, I called the doctor because I was still spotting, but everything else was fine, and it wasn’t a lot.
Daniel
My son was diagnosed with acute lymphocytic leukemia (ALL) in 1992 at 7 years old. Needless to say, it was a devastating blow to our family, and we were so scared! I had just gone through cancer illnesses with two other members of my family and knew how this diagnosis went. But my son, I never thought in a million years!
Bob
It has been five years since Bob had his stem cell transplant to get him remission from acute myeloid leukemia (AML), but his journey started over seven years ago when he was first diagnosed with myelodysplastic syndrome (MDS).
Jim
Stay focused, stay positive, live as life as normally as you did before diagnosis, and do your best.
Charity
In March of 2021, I was diagnosed officially with chronic myeloid leukemia (CML) after a blood test and bone marrow biopsy. I had just turned 30 and had my first child in August 2020. My OB/GYN noticed that my platelet and white blood cell counts were way out of the normal range and referred me to a hematologist. I did not go, thinking it is just the stress of my body carrying a baby. After I had my son, I began feeling really bad. I had no energy and had the feeling in the pit of my stomach that something was wrong.
Kennetha
I found out about The Leukemia & Lymphoma Society (LLS) through a peer at Brockport College where I attend the Healthcare Administration BSN program. My peer had many great things to say about LLS and was excited to be a volunteer intern. I'm grateful that I was given the opportunity to reach out to those who experience the life-changing event of having blood cancer and can provide them with the resources and support that LLS offers. I love volunteering for LLS because it helps me fulfill my passion for caring for others and making a difference in people's lives.
Paul
I have had the opportunity to know Paul since he was diagnosed with B-cell lymphoma (BL). Paul has an energy that makes it so you will like him instantly and this is exactly what happened. I have had my share of patient's lose their battle over the years so I am very cautious now of who I allow in my bubble. I am certain that even if I had not allowed Paul and his wife Carrie into mine they would have found a way in anyhow. Paul sailed thru R-Chop like a champ. I introduced The Leukemia and Lymphoma Society (LLS) and the work that you do for the Cohen's at this time.
Eva
In 2014, as a 19-year-old sophomore in college, I was diagnosed with Hodgkin lymphoma (HL). After two years of suffering from a mystery illness, I finally had answers; my itchy feet, night sweats, frequent infections, and shooting pain all snapped into place with a cancer diagnosis. I called all of my closest friends and packed my bags. I’d moved 3,000 miles for college, and traveled all the way back home — Los Angeles to Boston — for treatment. Next up would be six months of ABVD chemotherapy, known to be very effective and very unpleasant.
Carolyn
In November 2014, my daughter Valerie was born. Shortly after, I was diagnosed with an upper respiratory infection by my doctor and received 3 rounds of antibiotics because it just wasn’t going away. Life was hectic as I learned to care for my newborn and I was getting into a new routine. Some of my lymph nodes became swollen. I was having night sweats. I developed a rash and high fevers.
Robert
I was diagnosed with chronic myeloid leukemia (CML) in February 2021 after a bone marrow biopsy. Since that time, over the past 2½ years, I have had very serious side effects from my chemotherapy medication treatments. I was first prescribed Gleevec® 400 mg in March 2021, my first tyrosine kinase inhibitor (TKI). However, this medication put me in the hospital at the end of March 2021. I had an angiogram to check my heart as I had five stents in my heart in September 2018. I had very severe fatigue and very serious malaise.