Mycosis Fungoides

l was diagnosed with MF approx 2 years ago and I have recently undergone 6 months of Interferon. My skin has got progressively worse and I have recently been prescribed a one month course of Bexarotene (Targretin). Subject to the result of my biopsies this may continue for the foreseeable future, however if not possible Chemotherapy or if available Brentuximab.To complicate matters I also have Non Hodgkins Follicular Lymphoma for which I have just completed 6 months of Chemo. My question to the group is has anyone ever been prescribed Brentuximab and did your Consultant have any difficulties obtaining it. 

  • Welcome to the forum Lorraine.

    I'm sorry to hear your skin has got worse but fingers crossed that the month's course of Bexarotene helps. Have you started taking it? If so how are you finding it so far? I hope it is going well and is helping. I noticed that you mentioned biopsies. Do you know when you will get the results? Hopefully you won't have too long to wait and you receive good news when they come through.

    I'm not sure how much you know about Brentuximab but I have found some information on our website about it here if you want to find out more. Hopefully you'll hear from other members who have had experience with this soon but whilst you wait you can look for previous discussions about MF by using the 'search forum' option above and any other questions you may have can be discussed with our cancer nurses. They are available Monday - Friday between 9a.m - 5p.m on 0808 800 4040, which is free to call from a UK landline.

    Do come back and update us when you can.

    Kind Regards, 

    Steph, Cancer Chat Moderator