Signs and Symptoms
Published: May 1, 2009 12:00 am
The symptoms of MDS will vary depending on the severity of the disease. Nearly half of those with MDS display no symptoms upon initial diagnosis.
Anemia, or low red blood cell count, cause the most common symptoms because red blood cells are responsible for distributing oxygen throughout the body. In MDS, the percentage of healthy red blood cells is below normal; therefore, the body does not receive adequate oxygen.
Signs of anemia include:
- Chronic tiredness or fatigue
- Shortness of breath
- Heart palpitations
- Pale skin
- Chilled sensations
- Cardiovascular symptoms, such as chest pain (older patients)
Neutropenia, or a low white blood cell count, is another symptom of MDS. A shortage of white blood cells, which are responsible for fighting infections, increases the likelihood of acquiring an infection or fever. Of the various types of white blood cells, most people with MDS lack neutrophils, rather than lymphocytes, making them more susceptible to bacterial than viral infections. It is possible to have a defective immune system despite normal neutrophil counts.
The common infections associated with neutropenia include:
- Skin infection
- Sinus infection accompanied by nasal congestion
- Lung infection accompanied by shortness of breath or a cough
- Urinary tract infection accompanied by frequent and painful urination.
Thrombocytopenia, or low platelet count, is also a symptom of MDS. Platelets are responsible for blood clotting.
People with MDS have a greater frequency of the following symptoms:
- Nosebleeds (epistaxis)
- Bleeding gums
- Flat, pinpoint bruises
- Rashes of small red dots(petachiae).
Less common signs of MDS include:
- Enlarged spleen (splenomegaly)
- Enlarged liver (hepatomegaly)
- Abnormal shape or size of cells
- Chromosomal abnormalities.
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I am a Hospice nurse who just admitted a patient with MDS, her husband ask the question “What are we to expect as she progresses to end of life?” I am not familiar with the progression of MDS, so I told him that I would find out. I have been researching but unable to find specifics of “end of life.” Can someone help me?
Dear Valerie,
We recommend speaking with the physician who treats your patient for MDS. Her oncologist may be able to provide you with information based on her specific case.
A representative from the Aplastic Anemia & MDS International Foundation’s help-line (1-800-747-2820) explained that MDS patients typically experience fatigue from low oxygen and red blood cell counts and are very susceptible to infections due to low white blood cell counts. Patients rarely die from MDS directly, but infections are typically what cause a patient to pass. Patients can receive transfusions at an outpatient infusion center to help alleviate fatigue, but patients who have received 15-20 transfusions (~1 year’s worth) may be at risk of iron overload. Excess iron binds to major organs (heart, kidneys, and liver) and can cause complications. Near the end of life, patients sometimes experience joint or muscle pain, and they may experience ulcers in the mouth or bleeding gums from low platelets.
Please feel free to let us know if we can help you with any other questions, or visit the AA&MDSIF’s Online Learning Center or call their help-line.
Thanks for helping your patient and her family through this difficult time.
My brother died of MDS & my sister also. Now I have started with having Anemia. Can this be family related? Also my body aches all over. Also fatigue. I AM 73 YEARS OLD.
Dear Donna,
Dr. Amelia Langston from Emory Winship Cancer Institute said, “MDS can rarely run in families, usually in association with specific chromosome abnormalities in the marrow. Inherited cases tend to occur at a younger age than the average for MDS, but this is not always the case. If you are anemic and there is not an explanation such as a vitamin or mineral deficiency or other illness, I might suggest a formal consultation with a hematologist.”
A family member is age early 80’s, transfusion dependent, but extremely healthy other than MDS,and has had both Vidaza and Dacogen courses in the past 18 months with no significant effect.
It sounds like the effect of age on stem cell transplant success is being reconsidered. Is stem cell transplant in octogenarian patients presently being contemplated anywhere ? Is there the opportunity for this age group to receive stem cell transplant treatment by research protocol?
Dear Scott,
Dr. Amelia Langston from Emory Winship Cancer Institute said, “It is becoming more and more clear that comorbidities are far more important than age. That having been said, folks in their 80’s are rarely considered. I would suggest an evaluation at the Fred Hutchinson Cancer Ctr. They have protocols that would be most likely to be applicable.”
Thank you for this information.
I was diagnosed with MDS in2002, I am now in the process of a stem cell transplant. My brother has the same, he had his transplant 12-09. My other brother died from orqan failure due to Luekemia at the age of 53. I was 48 when I was diagnosed, my brother was 53.
Just discovered this website.
I have a friend who has MDS q-5. She is 81 and is now transfusion dependant. She is on Revlimid 5mg every other day after they had to stop treatment. They had to pause treatment for about 10 days to allow kidney function to improve.
She is now showing 1+ polychromasia. Is this likely showing that her B.M. is now producing normal rbc’s?
I think that “active” B.M. in an 81 yr old is about 25%. I thought this might be a reason it takes another cycle or two with Revlimid before she can become transfusion independant.
Thanks for any comment/
She is also healthy and very active otherwise and inspite of a Hgb range of 7.5 and 8.5
Myrna
Dear Myrna,
Dr. Amelia Langston from Emory Winship Cancer Institute said, “Most patients with 5q- respond within a month to 6 weeks on drug, but it sounds like her therapy has been quite interrupted. I would give her at least 6 weeks of being on drug at a tolerated dose and schedule before calling it quits—that is as long as the other blood counts (hemoglobin and white blood count) are holding up.”
Hi Julie,
Thanks for that info. I’m wondering if the fact that this friend is 81 and the amt of active bone marrow is reduced might also be a factor in response to Revlimid? I believe the doctor is trying her at 5 mg every other day for the next month and then may switch to Vidaza.
Thanks again for you information.
Myrna
Has anyone heard of LBH589 the Dr. wants to treat my mom. They don`t know if she has MDS or AML.
Thanks for any info,
Sue
Dear Sue,
LBH589 is also known as panobinostat, which is being developed by Novartis. Panobinostat, as a single agent, has shown potential in Phase 1 trials involving patients with Hodgkin’s lymphoma, multiple myeloma, AML, and prostate cancer. Panobinostat is also being studied alone or in combination with other treatments for MDS and various other cancers (see clinicaltrials.gov for a listing of trials). For MDS and AML patients, panobinostat is being studied alone as well as in combination with Vidaza (azacitidine), Dacogen (decitabine), or erythropoietin stimulating agents.
I have had MDS for about 18 yrs now. I had treatment at the NIH which was the ATG serum and cyclosporin. That was 7 yrs ago. I did really good, no transfusions. Now I have just been diagnosed with RAEB-1. I am wondering if there is a treatment available – Thank you
Dear Susan,
Dr. Amelia Langston from Emory Winship Cancer Institute said, “This is a scenario that we sometimes see, and there are treatments. It is important that you see a hematologist who can look at all of your records and consider which options might be most appropriate for you.”
Dr. Mikkael Sekeres from the Cleveland Clinic said, “Sure – in the setting of excess blasts, standard therapy is considered one of the hypomethylating agents – Vidaza (azacitidine) or Dacogen (decitabine), either of which can be administered closer to home (e.g., you do not have to go to the NIH). Make sure you find out your cytogenetics status, too.”
Thank you Dr Langston and Dr Sekeres for your responses. I now have a
new oncologist and I am starting Dacogen treatment on Monday. I will let you know how I am doing. I have had my cytogenetics done and now have 3 chromosome changes that are new for me. Still not too sure what that is meaning, but am hopeful with the treatment plan. Thank you.
My father died in 2005 of MDS. He worked in an auto factory…could chemicals have contributed to this disease? Also, he complained of a fullness in his upper right abdomen for a couple years before he was diagnosed. His cancer doctor told him that that was common with patients suffering from MDS. I see nothing on any web sites about that now but 5 years ago it was mentioned as a symptom. Can you comment please on these two things? Thank you
Hi Kathy,
Dr. David Steensma from the Dana-Farber Cancer Institute said:
“While the cause of MDS is unknown in most cases, there is suspicion that exposure to certain chemicals that can damage DNA and injure bone marrow cells may contribute to development of the disease. This is a controversial area, however. It is well recognized that exposure to toxic hydrocarbons such as benzene and certain industrial solvents can cause bone marrow failure. However, many patients who work in factories or other settings where they are at risk for such exposures never get MDS or other blood problems, so there must be other factors involved. Ongoing epidemiological and genetic studies may help answer some of the important questions about how MDS develops.
I am not certain what caused the sense of fullness in your father’s upper right abdomen. This symptom suggests enlargement of the liver, which is uncommon in MDS. Some patients with MDS who have received many red blood transfusions will develop deposits of iron in the liver, which can contribute to liver enlargement.”
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