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How to Treat Desmoid Tumors

Popular Options for Desmoid Tumors

Treatment for desmoid tumors depends on factors like size, location, severity of symptoms and patient preferences. This article will detail treatment options, like Ogsiveo (an oral therapy), and ways to manage symptoms and improve quality of life.

1. Ogsiveo (Nirogacestat)

Ogsiveo, a newly approved oral therapy, is a groundbreaking option for treating desmoid tumors. It works by inhibiting gamma-secretase, a key enzyme in the Notch signaling pathway, a cell-to-cell communication system that regulates many cellular processes in the body. Clinical trials have shown that it can significantly shrink tumors, improve symptoms and enhance patients' quality of life.

Ogsiveo is a popular treatment option for patients, as it’s non-invasive and can be taken orally.

Some possible side effects of include:

  • Rash
  • Nausea
  • Tiredness
  • Mouth sores
  • Headache
  • Decreased appetite

Make sure to discuss Ogsiveo with your doctor before making any decisions about the best treatment options for your condition.

2. Surgery

Surgical removal is a traditional and reliable treatment for desmoid tumors, especially for accessible tumors causing significant symptoms. However, complete removal can be challenging due to the risk of damaging nearby tissues or organs. Additionally, desmoid tumors have a high recurrence rate after surgery.

3. Radiation Therapy

Radiation therapy may be used as a primary treatment or in combination with surgery. It’s particularly helpful for inoperable tumors or recurrent cases. Modern techniques allow for precise targeting, minimizing damage to surrounding tissues. Radiation therapy is a great option for patients, as it’s proven quite effective in controlling tumor growth and reducing symptoms.

However, some potential side effects may include skin irritation, fatigue and long-term risks of tissue damage.

4. Hormonal Therapy

Hormonal therapies, such as tamoxifen, are sometimes used for desmoid tumors due to their anti-estrogen effects. These treatments are often combined with other therapies for enhanced efficacy. Hormonal therapy can play a large role in reducing tumor size in some patients.

However, side effects may include hot flashes, mood changes and fatigue.

5. Systemic Therapies (Chemotherapy and Targeted Therapies)

Certain chemotherapy agents and targeted therapies are used to treat desmoid tumors. These systemic options are often reserved for aggressive or recurrent cases. Drugs like imatinib (a tyrosine kinase inhibitor) or low-dose methotrexate are sometimes prescribed to slow tumor growth.

While systemic therapies have generally positive results, due to their aggressive nature, side effects (such as nausea, fatigue and immune suppression) can be intense.

6. Active Surveillance (Watchful Waiting)

For asymptomatic or slow-growing desmoid tumors, active surveillance may be a viable approach. Regular imaging tests, such as MRI or CT scans, help monitor the tumor’s growth and assess changes. This strategy avoids unnecessary treatments unless the tumor begins to cause problems.

This is a good option for many people, as it avoids unnecessary treatments and subsequent side effects from more aggressive treatments. That said, it requires being quite diligent and proactive about booking your scans.

7. Lifestyle Management and Symptom Relief

In addition to medical treatments, lifestyle adjustments can be very effective in managing symptoms and can help improve overall well-being:

  • Pain management: Over-the-counter pain relievers or prescription medications can alleviate discomfort caused by tumor pressure.
  • Physical therapy: Gentle exercises and stretches can help maintain mobility and prevent stiffness, especially for tumors affecting muscles or joints.
  • Diet and nutrition: A balanced diet rich in fruits, vegetables and lean proteins can support overall health and recovery. Stay hydrated and consider consulting a nutritionist if dietary challenges arise.
  • Stress reduction: Chronic stress can exacerbate symptoms. Practices like yoga, meditation or mindfulness can enhance emotional well-being.
  • Support groups: Connecting with others facing similar challenges can provide emotional support and practical advice.

8. Clinical Trials

If standard treatments are not effective, consider enrolling in clinical trials. These studies explore new therapies and innovative approaches for desmoid tumors. While there are some risks involved, it can be worth it if you feel you’d otherwise be out of options or are unhappy with your current treatment.

Talk to your healthcare provider about ongoing trials that you may qualify for.

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