A warm November T-Cell Lymphoma Group welcome.

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The frosty mornings are now with us but a very warm welcome is extended to everyone who joined us over the past month.

We are so sorry that you had to find us but you have found a supportive place where we all understand what this blood cancer journey is like.

We are a rather exclusive group of people and with that brings a lack of knowledge and information so this forum could be invaluable to everyone on their T-Cell journey. So recording your first hand life experience living with a T-Cell condition is so important regardless of how small that information is.

If you have any questions or just want to talk with someone just hit the 'Start a Discussion' tab and introduce yourself to the group and remember to go to the right on the group home page and select how you want to receive email notifications when someone answers your posts.

If you have not done this, it would be really useful if you could put some information in your profile as this will help others when replying to you.

Just click on your username and then select 'Edit Profile' under the Profile Settings. If you're not sure what sort of thing to put just click on our forum names to get an idea.

Have a look through our various Macmillan Support Line Services then call them on 0808 808 00 00 to be very helpful covering Emotional Support and Practical Information. Clinical Information and Financial Support and Work Guidance mostly open 8.00 to 8.00 but check the link.

We are always around to help as best as we can.

  • FormerMember
    FormerMember

    Hi, I am not sure if I wrote on here last year about my skin biopsies which showed some T cell infiltrates?  No-one could really make up their mind about this and in the end by the time I got to see a special specialist, the skin was in a less flared state. This had been going on for several years.

    Anyway a year on, my lovely dermatologist who is as frustrated as me, took several biopsies 10 days ago and now I am waiting for the results...it may sound strange but I really, really hope that there is something obvious, as living with this unnamed almost constant skin thing is worse than knowing.  Also she did some bloods and the iga is elevated which may have some links.  I have also had shivery feelings and mild temperature which comes and goes and flakes me out. {not associated with my bladder concerns}

    We are waiting for the results from the labs in Leeds and I wish it would happen quickly.  Then maybe an MDT meeting and I hope, really hope they don't come back and say 'well, I think it is a kind of Lichen Planus/eczema/dermatitis' !!!

    Any comments??

    Thanks MQ

  • Hi MQ , I had a look back through your site activity and this is the first time you have posted in the T-Cell Forum.

    The skin is the largest and one of the most complicated organs in the body and is open to all the pressures that is thrown at us.

    I can understand the frustration around getting a clear diagnosis, you will see from my profile that it took well over 21 months between my GP and my very respected Dermatologist to get a clear answer, many biopsies, a few CT scans were required and in all this time nothing ever showed up in my bloods.

    Getting a clear answer, regardless of what this is is always the best way forward as you then can move on into treatment where required.

    Interestingly my this time last year my wife was diagnosed with Lichen Planus and was told that it had been triggered by an infection and would take a good year to clear and sure enough it has now totally cleared.

    Lets look for this to be snowing simple and once you get your answer please come back and tell us.

    ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • FormerMember
    FormerMember in reply to Thehighlander

    Thanks for your reply...always good to know there is someone out there!  I will also look at your profile again as I might have done that last year when I was just 'lurking'...

    Keep warm

    MQ x

  • Always around to help out.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi just dropped in to say hello, I still trying to get to Maggies Inverness to shake you hand

    lee

  • Hi Lee, so good to hear from you....... time is moving on, another Christmas......I often think about you.

    Most definitely that catch up at some point in time is high on my list.

    Have a great Christmas Lee and a warm man ((hug)) coming all the way to Barra. 

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge