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Lomustine for GBM x Dexamethasone

Sparkles123
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A family member whose had the full max dose of Temozolomide has now been moved to Lomustine. Can a nurse tell me a little more about this drug? Why is it used after Temozolomide is no longer effective? The patient felt strange side effects - unable to get up from bed at all - zero strength, lays there unable to move like upper body suddenly paralyzed, extreme lack of emotions (pretty scary) during the first 2-4 days post Lomustine, then with the help of Dexamethasone he is now re-gaining some strength and able to get himself up on day 5.  This is so strange but what could potentially be the side effects from Dexamethasone if taken long-term going forward? Thank you in advance. 

  • Dear Sparkles123, 

    Thank you for contacting the Macmillan Cancer Support online community. We hope you find it a welcoming place to ask questions and seek support. My name is Lindsey and I am one of the cancer information nurses here. 

    I am sorry to hear that your family member is having such a difficult time after his Lomustine. It must also be worrying for the family to see him like that. Please ensure that he keeps his treatment team aware of how he is feeling so they can make plans to help him. 

    Our information on Lomustine explains the common side effects. More in depth information on Lomustine can be found on the electronic Medicines Compendium. 

    Both Temozolomide and Lomustine are used to treat brain tumours. Different chemotherapy drugs work to kill cancer cells in different ways. It is usual that when one drug is no longer effective, a switch is made to a different drug. Your family members team can explain to him their reasons for changing his treatment. 

    I am pleased to hear that he is getting some help from Dexamethasone. The side effects are explained in the link. Dexamethasone and other steroids are used during cancer treatments for many different reasons. They are often used short term only. Your family member will be guided by his doctors as to how long to take them for. 

    Extreme tiredness (fatigue) is common in cancer and cancer treatments. Our booklet has useful information on managing fatigue. 

    I hope you have found this to be helpful.  

    Please don’t hesitate to get back in touch. You would also be welcome to speak to one of our nurses on the support line. It is free of charge and open 8am to 8pm, 7 days a week. The phone number is 0808 800 00 00. 

    Kind Regards, 

    Lindsey 

    Ref/Lrob/SMc

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