Patient Videos

Abby describes the symptoms she experienced leading up to her diagnosis of MDS-related anemia. She had severe back pain and was scheduled for back surgery. She also experienced severe fatigue but she was convinced that this was from lack of sleep due to her back pain. Before her surgery, it was discovered that she had a low hemoglobin level and was referred to an oncologist who did a bone marrow biopsy. The biopsy result confirmed she had MDS-related anemia.

Barry describes how he found out he had MDS-related anemia. He was due to have surgery to remove a bone spur from his foot, and during a pre-operation blood test it was discovered that he had anemia due to an extremely low hemoglobin count. Subsequently, he had a bone marrow test done and a week later he was diagnosed with MDS with chromosome deletion 5q.

In kind memory of the passing of Barry Jacobs who wanted to share his experiences with others suffering from MDS.

Bill talks about his experiences leading up to his diagnosis of MDS-related anemia. He first noticed an abnormality in his blood counts over a decade ago. Blood test results from his regular checkups revealed that his hemoglobin and neutrophil counts were low to below normal range. Although Bill says that he never experienced any physical symptoms or discomfort, eventually his hemoglobin and neutrophil counts dropped even more. At this point, his oncologist began treating him with an erythropoiesis stimulating agent (ESA) to try to slow down and improve his anemia.

In kind memory of the passing of William Veljovich who wanted to share his experiences with others suffering from MDS.

Abby discusses the symptoms and challenges she experienced in her daily life – such as severe fatigue while working or when doing simple tasks like climbing stairs. When she discussed this with her oncologist, several blood tests and a bone marrow biopsy were performed.  The bone marrow biopsy result gave Abby a definitive diagnosis that she had MDS-related anemia.

Barry describes the tests he had that confirmed his diagnosis of MDS-related anemia. A bone marrow test confirmed that his anemia was due to MDS. Barry says he was initially scared to think about the idea of having cancer. He says that it’s not been scary of late however, as he’s lived with his condition for some time now, and still has hope for the future.

In kind memory of the passing of Barry Jacobs who wanted to share his experiences with others suffering from MDS.

Bill explains that his anemia was a concern and that he wasn’t sure if it was MDS-related. It was not until his blood counts dropped significantly that he decided to get a bone marrow biopsy. The test detected a significant number of bone marrow blast cells, which led to Bill’s diagnosis of having MDS and the related anemia.

In kind memory of the passing of William Veljovich who wanted to share his experiences with others suffering from MDS.

George describes the process and tests he went through when he was diagnosed with myelodysplastic syndromes (MDS). He also talks about what his doctors told him and how he felt when he learned of his diagnosis.

In kind memory of the passing of George Benson who wanted to share his experiences with others suffering from MDS.

Becky talks about her MDS gene mutation profile, SF3B1, and the experiences she had with diagnosis and testing. She also talks about her MDS journey thus far and the learnings she has had along the way.

Donna talks about her MDS gene mutation profile at the time of her MDS diagnosis, which included SRFS2, ASXL1, and on subsequent testing, RUNX1 and TET2. Her mutation profile changed over time and recent testing has revealed mutations in genes EP300, ETNK1, IDH2, and SF3B1.

Holly talks about her MDS gene mutation profile, which is a TP53 gene mutation, and the experiences she had with her MDS diagnosis and mutation testing.

Becky shares her advice for other people with MDS about genetic testing. She found it reassuring to have her testing done. She recommends that other MDS patients get genetic sequencing done because it helps identify treatment options (including the possibility of participating in clinical trials) and helps to determine the outlook for each person.

Donna shares her advice about genetic testing for other people with MDS. She recommends that patients talk to their doctors about getting testing because the results help direct treatment. She says it is important not to panic when you are first diagnosed with MDS. She feels there is more hope now than ever before because of new research and new treatment options for MDS.

Holly shares her advice and strongly recommends that other people with MDS get genetic testing. She says it is critically important in helping determine your treatment plan.

David talks about the initial types of treatment he was given for his MDS, before he had his blood and marrow transplant (BMT).

In kind memory of the passing of David Hintzke who wanted to share his experiences with others suffering from MDS.

Abby reveals that the biggest challenge of her MDS-related anemia is dealing with the fatigue and coinciding depression of not being able to move and think as quickly as she was once able. Abby says that finding something to keep her busy helps her to get through each day.

Barry talks about the main challenges he has faced with his MDS-related anemia. He faced a mental challenge that he was able to overcome. He says he was fortunate to never experience any side effects from his lenalidomide and azacitidine treatments. In the last few years however, Barry says that his biggest challenge is that he now feels a lack of strength.

In kind memory of the passing of Barry Jacobs who wanted to share his experiences with others suffering from MDS.

Bill describes how his greatest challenge with his MDS-related anemia has been adjusting to the amount of time the treatments take out of his day. He attributes this to the lengthy amount of time required for transfusions but also for various chemotherapy treatments.

In kind memory of the passing of William Veljovich who wanted to share his experiences with others suffering from MDS.

Abby talks about the treatments she receives for MDS-related anemia, which include medications to increase her red blood cell and hemoglobin levels, as well as blood transfusions. While these offer help, they are unfortunately not cures, and Abby discusses how a significant portion of time every week needs to be devoted to receiving these treatments.

Barry talks about the successes and challenges he has experienced with the various treatments he has been on for this MDS, including lenalidomide, azacitidine, and blood transfusions. He also talks about navigating the costs of treatment, which for some people can be quite financially burdensome.

In kind memory of the passing of Barry Jacobs who wanted to share his experiences with others suffering from MDS.

Bill reveals that his greatest success with his MDS-related anemia treatment occurred after he underwent four treatment cycles of decitabine/venetoclax. He describes how his blood counts increased to a level where he was able to go without a blood transfusion for a period of six months.

In kind memory of the passing of William Veljovich who wanted to share his experiences with others suffering from MDS.

Abby shares her advice for other people on their journey with MDS-related anemia. She says to remain strong and to stay focused on something positive in the future. When visiting her doctor, she recommends writing down questions beforehand, and not being shy to ask questions. She also recommends spending time with family and friends, networking with other patients, and reaching out to the MDS Foundation for information and support.

Barry shares his advice for other patients who have MDS-related anemia. He recommends reaching out to the MDS Foundation and learning as much as you can about the condition so that you know what to expect and can overcome fears. He also suggests participating in meetings with other patients and listening to their experiences because it will help you to self-reflect on how your life has also changed.

In kind memory of the passing of Barry Jacobs who wanted to share his experiences with others suffering from MDS.

Bill shares his advice about living with MDS-related anemia. He recommends learning as much as possible about the disease and doing research to find the best doctors and facilities in your area that specialize in treating your specific condition. Finally, Bill says that it’s very important to not dwell on the disease but rather to keep living your life as normally and as long as you possibly can.

In kind memory of the passing of William Veljovich who wanted to share his experiences with others suffering from MDS.

Becky talks about how her MDS gene mutation profile has affected her treatment experience, and how her gene mutation profile has evolved over time.

Donna discusses how her MDS gene mutation profile has affected her treatment experience. Her mutation profile has changed over time, and the accumulating number of mutations worries her a little. She discusses with Dr. Rafael Bejar how certain mutations may categorize a person at a higher risk, which influences when to start treatment and which treatments to use.

Holly discussed how her MDS gene mutation profile has affected her treatment choices and the timing of her stem cell transplant. She discusses with Dr. Rafael Bejar how her TP53 gene mutation is associated with a less favorable response to MDS treatment.

Becky talks about some of the successes she has had with her MDS treatment. The biggest success she has had is knowing that she is in good hands with her care team at the MDS Center of Excellence where she is treated. She is receiving chemotherapy and getting transfusions when needed.

Donna describes the successes she has had with her MDS treatments. She talks about her platelet counts after three cycles of decitabine and shares her experience in the hope that it will help other patients with MDS.

Holly describes the successes she has had with her MDS treatment journey. She has gained knowledge about MDS which has empowered her self-advocacy skills. She is happy to share her knowledge and experiences with other young MDS patients facing such a rare diagnosis.

Becky reflects on the challenges of her MDS treatment, which include the sense of not knowing what lies ahead, the pacing of her treatments, and the decline in blood counts that she experienced during treatment.

Donna describes some of the side effects she experienced during her MDS treatment, which included neutropenic fever, sores in her mouth, fatigue, and low neutrophil count. She wishes that her blood count numbers would have been higher so that she could have continued treatment for a longer period.

Holly talks about the challenges she experiences from her MDS treatment. Her white blood cell counts were very low which caused infections and multiple hospital stays, which in turn delayed her treatment and transplant date. However, the good news she shares is that her white counts have now increased, and her transplant date is confirmed.

David describes the tests he underwent for the diagnosis of his MDS, as well as the experiences he had leading to his blood and marrow transplant (BMT).

In kind memory of the passing of David Hintzke who wanted to share his experiences with others suffering from MDS.

David shares his experiences with blood and marrow transplant (BMT). He talks about what he went through during and after the BMT, and shares advice for others.

In kind memory of the passing of David Hintzke who wanted to share his experiences with others suffering from MDS.