Living with CTCL

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Hello all

i stumbled upon this group doing research on when Mycosis Fungoides  is in the lymph nodes... Ill try anf keep my story short but back about 12 years ago when i was 30, i started getting these weird patches on my trunk, elbow joints and behind my knees.. they were super itchy and even worse in the winter. I saw my GP who diagnosed me with cold induced urticaria, gave me some antihistamines and cslled it a day.. For started the antihistamines made me sleepy all the time and did nothing for the rash.. Back and forth for years and years between derms, specialists etc and i was told i either had psoriasis, yeast  or eczema.. again given all these creams that burned the shit out of me.. basically lived my life covering up extra in the winter.. 

Now in the meantime i noticed lymph nodes in my neck and groin that just wouldnt shrink.. i had ultrasounds and was told they are "fine"...

Come october last year my skin was beet red as usual and she did a biopsy.. turns out i have CTCL Mycosis Fungoides.. When i heard lymphoma, i sware my life glashed before me... thank god i had a diagnosis but now what?! I was doing the triamcinolone everyday which only thinned out my skin and UVB therapy which my insurance wont cover and i cant afford the 100$ a week in sessions.. My insurance covers home UV unit only for psoriasis NOT cancer, so my doctor re submiited chsrt notes with said diagnosis.. But my lymph nodes are becoming more pronounced in my groin and im freaking out a bit.. i see my oncologist soon and just wondering whats next... 

any advice would be helpful.. besides my son, everyone has kinda disappeared after my diagnosis and everyone says "you cant die from your cancer" 

  • Hi  and a warm welcome to this corner of the Community although I am sorry to see you joining us. 

    I am Mike and I help out around our various Lymphoma groups. 

    I was diagnosed way back in 1999 at 43 with the rare, incurable but treatable Mycosis Fungoides.

    MF is a type of Low-grade non-Hodgkin lymphoma and yes indeed it falls into the sub-group of Lymphomas called Cutaneous T-Cell Non Hodgkin’s Lymphoma (Skin Lymphoma) (CTCL)

    We do actually have a dedicated group covering T-Cell NHLs

    To connect in with the group click on this link Point down

    T-cell lymphomas.

    …… then once the group page opens click in the [Black - Click to Join - Banner] that appears at the bottom of the page and this will then confirm that you have joined the group.

    When you are ready……. you can introduce yourself by putting up your very own post by clicking [+ Create new post] or [ + ] in the top right of the group page.

    You can copy and paste the text from this post into your new post.

    I am out and about for a good part of the day today but I will look out for you in the group.

    My story is rather complicated See my story as I developed a second type of more aggressive T-Cell NHL in late 2013 so had to go on and have some strong treatments but I am coming up to 8.5 years out from my last treatment and I turned 68 in Nov and living a great life.

    everyone has kinda disappeared after my diagnosis and everyone says "you cant die from your cancer" 

    Sorry to hear about your friends……. on the whole they are correct….   most people live their whole life ‘with’ their MF and it does not tend to be reason you die……. You die with your MF…… but as you see from my story ‘other’ issues can come along due to you having MF….  but it’s important to understand that we can’t minimise the challenges of living with MF……. It can be hard at times.

    I assume that you are in the US……. how MF…… in fact all health care is treated in the UK can be very different especially as our treatment and care are all paid for through our tax system so we don’t need insurance and even if we don’t pay tax we still get the treatments as it is all available free through our National Health System.

    Talk later.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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