4 Questions You May Have After Being Diagnosed With Myelodysplastic Syndromes

Being diagnosed with Myelodysplastic Syndrome (MDS) can be both emotionally and physically challenging. In this article, we will provide clear and concise answers to common questions that individuals often have after being diagnosed with MDS. 

1. Why Did I Not Experience Any Symptoms Before My Diagnosis?

As early stage MDS can be asymptomatic, it is possible to have MDS and be unaware. Patients in this situation are often only diagnosed after an incidental finding of low blood counts on a routine blood test.

 

2. What Are The Complications I May Experience In The Future?

The complications are related to the suppression of the bone marrow. This would include: 

  • Anaemia. Low red cell count, resulting in lack of energy, shortness of breath, and poor concentration.
  • Bleeding and bruising due to a lower platelet count.
  • Recurrent infections, having too few white blood cells increases your risk of serious infections.

 

3.Should I Change My Diet And Lifestyle After My Diagnosis? 

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There are no specific foods to avoid with MDS, and there is no evidence that any foods increase the risk of developing MDS. However, MDS patients have a high risk of developing iron overload, so it is best to limit the intake of iron-rich foods if your doctor notices that your iron indices are elevated.

In addition, in patients with low white blood counts, it is important for patients to avoid raw or uncooked foods (such as sashimi or undercooked steak). Patients in these instances are also advised to avoid raw foods such as salads. Patients should instead consume a well-balanced diet of vegetables, fruits, protein and carbohydrates to maintain their energy levels.

As patients manage MDS, they should also adopt healthy habits in their everyday life. This includes not smoking, being physically active and maintaining a healthy weight. Check with your doctor on a safe exercise regime for your condition. 

 

4.Can Myelodysplastic Syndrome Be Cured?

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At present, an allogeneic haematopoietic stem cell transplantation is the only curative form of therapy for MDS.

There are other treatments to treat MDS, including a class of drugs known as hypomethylating agents (HMAs). These treatments have been shown to be effective in stabilising and, in some cases clearing the underlying MDS. However, drugs like HMAs need to be administered on a regular basis for durable remissions. In the majority of cases, the MDS will recur over time if the treatment is stopped.

How soon it can be cured and how long a patient can live with Myelodysplastic Syndromes also depends on the prognosis which is determined by several factors, including the risk category, the presence of other medical conditions, and age.

The IPSS-R (International Prognostic Scoring System – Revised) is a scoring system that helps to classify MDS patients at diagnosis into 1 of 5 groups. Patients are categorised from very low risk to very high risk groups based on 1) their risk of transformation to acute myeloid leukaemia (AML) and 2) risk of mortality.

Overall, patients diagnosed with Myelodysplastic Syndromes have an average life expectancy which can range from 0.8 to 8.8 years. Patients with very low risk MDS tend to live for longer without the need for intervention. However, patients with very high risk MDS generally require treatment sooner and may have a shorter life expectancy.

 

Get Your MDS Questions Answered With CFCH

Receiving a diagnosis of myelodysplastic syndromes can undoubtedly bring forth a whirlwind of questions and concerns. By seeking knowledge, connecting with support networks, and partnering with experienced healthcare professionals, we aim to support you through your treatment journey.

If you’re looking for comprehensive care and guidance tailored to MDS patients, explore the services offered at CFCH. Our specialised team is dedicated to providing personalised treatment plans, addressing your unique needs, and assisting you every step of the way.

Disclaimer:
The information on the Centre For Clinical Haematology website is intended for educational use.  It should not be considered or used as a substitute for medical advice, diagnosis or treatment from a qualified health professional.

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