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Mycosis Fungoides

5 Feb 2018 11:16

Hello.

My Mum  is 74 and was diagnosed with Mycosis Fungoides 12 months ago after being originally told her rash (that she had for a number of years)  was ezcema.  A definite diagnosis was only made after my Mum went to the doctors (3 times) complaining of lumps in her neck and a biopsy was carried out.  Unfortunately the lymphoma has progressed into her lymph glands.  She was originally prescribed with interferon injections but these didnt help at all.   Mum then had 3 cycles of chemo but her immune system became so damaged and She kept getting infections so they stopped the course.   The consultant then decided to try Bexarotene.  However, after just 2 weeks, when Mum became unwell again,  they decided this drug wasnt working and have now taken my Mum off it.  My Mum is very poorly in hospital at the moment - the consultant has told us the cancer has spread to all of her glands and is also in her chest and stomach.  The consultant has told us there is nothing else they can do for my Mum.   Her prognosis is a matter of week/months.  I know that this is quite a rare form of Lymphoma but wondered if anyone else had any experience of this awful cancer and can recommend any further treatments?  My Mum doesnt get any sleep at all due to the constant itching.  None of the creams prescribed seem to work.  I just feel if my Mum could get some quality sleep this would help her recovery and build up her immune system.  The Doctor prescribed sedatives to help her sleep but even these do not seem to help.   We are absolutely desperate to find something to make her comfortable or an alternative form of medication to help her as time is running out and we feel that the Consultant has now given up on her.  Many thanks Tessa.

Re: Mycosis Fungoides

5 Feb 2018 11:40 in response to tessam

Hello tessam.  I have never heard of Mycoisis Fungoides but on looking through this website I learned from a previous post that there is information about it here and I am hoping the moderators will provide a link for you.  In the meantime if you type Mucosis Fungoides in the Search Forum box above your post you will come across several posts but most relevantly the one where the moderators provides the link to the information.  I am sorry I cannot lay it all out for you ready to read but hope that you will find what you seek by the longer route that I have just taken.  Best wishes.

Re: Mycosis Fungoides

5 Feb 2018 11:52 in response to Annieliz

Thank you for replying and I will have a look.  Many thanks.

Re: Mycosis Fungoides

6 Feb 2018 09:48 in response to tessam

Hi Tessam, 

I'm not sure if you've found the information @Annieliz ‍ mentioned in her post but if not I've included a link just here so you can have a look. 

I hope this helps and if you want to chat to someone about this do give our cancer nurses a call on 0808 800 4040. Their lines are open Monday - Friday between 9a.m - 5p.m.

Best wishes to you and your mum, 

Steph, Cancer Chat Moderator