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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

Re: Mycosis Fungoides

23 Jun 2018 22:20 in response to tessam

Hello Tessam,

I am so sorry about your Mum and the awful ordeal she has gone through. I don't want to worry you but my Mum just passed away from this awful disease. Mycosis Fungoides and Sezary Syndrome which is similar disease also known as Cutaneous T Cell Non Hodgkins Lympthoma, is a very rare disease. My Mum kept getting told at a local surgery with four Doctors that it was Psorasis and or Dermatitus.

She was also like your Mum, made to wait a year before getting an actual prognosis. It makes me angry that Doctors are not trained to recognise the symptoms nor carry out immediate test protocols and I sincerly think that organizations like Cancer Research UK should be trying to get implemented. This disease is not to be messed with but in early stages, the cancer cells apparently can look like normal ones. My Mum was not offered Stem Cell therapy or radiation. She was offered Caelyx which initially was working and shrinking her swollen lymph nodes down then it backfired after the hospital decided to take her off the Chemo mid treatment as they felt she was doing "ok". A second line chemo drug also failed. 

Mum got to stage 3 last year then stage 4 quite quickly, was told nothing more can be done. She was constantly scratching/bleeding and had edema in her legs also known as Lympthedema (swelling and water retension in legs with tumour sites) exposing herself to infections. She died three weeks ago as the cancer had metasized to her lungs, MSRA and Pneumonia had set in and she could no longer breathe on her own, had to be on oxygen. She was getting better on anti biotics but also had Delirium and kept trying to lash out at nurses, pulling her IV candula line out all the time. The day  before she passed away, she was up and about again, happy and full of life, then she collapse later and that's when she went on to an oxygen machine. It's truly heartbreaking.

Make sure your Mum is drinking plenty of water and fresh raw foods and make sure to watch out for the signs of infeciton. This disease makes people prone to infections and Chemo on top makes things worse I think.

I really hope the best for your Mum, this disease has no reason why it exists and no cure. She could try for a clinical immunotherapy trial but we were denied that. I am going to start campaigning this cruel disease and make more awareness. I want Doctors and Oncologists to get better trained at diagnosing it. All patients who have a suspicious problem with their skin should automatically be offered a lumbar punch, it was the way my Mum was diagnosed. 

Re: Mycosis Fungoides

25 Jun 2018 13:22 in response to adam1985

Hi Adam,

First of all, I am so sorry to hear that your Mum has passed away. I know exactly how you are feeling - in fact, when I read your post, it could have been me that was writing it!  Sadly, my Mum passed away on 4th March this year (4 weeks after typing my post).  We tried everything we could to help her - I even slept with her every night at the hospital for her final 4 weeks (and her last 5 days at the Hospice) as I was so worried about the care that She wasn't receiving due to ignorance about her condition and lack of care given in general. My Mum was hypoxic (64% Saturations)  and had oedema in her legs like your Mum during the final weeks and I had to constantly fight with the hospital staff to have Oxygen prescribed to assist her breathing.   I did a lot of research on line in desperation (as you do) to try and see if there was a cure or something that Mum's consultant could try for her.  Her final drug - Bexarotene was withdrawn after only 3 weeks as the Consultant said it wasn't working although we thought we could see an improvement in her.  We think it was withdrawn due to the cost and have put a formal complaint into PALS which is currently being investigated.

Not long after my Mum passed away, I joined a group on Facebook for people with MF and Sezary and their carers.  I wish I had found this group earlier as I have spoken to so many people around the World who have this terrible condition and they have shared their experiences and updates about their treatments.  They seem to be doing a lot of research and trying out new drugs in the US (including canabis)  and Stem Cell and some of the results have been positive with some patients now in remission.  Mum herself volunteered for the research programme and donated blood and biopsy samples in the hope a cure would be found.

 

Mum was only diagnosed after having a biopsy after developing lumps in her lymph nodes in her neck and was Stage 4 by then so agree with you that testing should be done way before this stage if a person develops a persistant rash and not just put it down to eczema or dermatitis.

 

Take care

Tessa