**Hi i’ve just been shockingly diagnosed with AITL from first symptom to chemo (which starts tomorrow) is just 8 weeks- it’s scary as it has come out of nowhere - i’m happy to join the group as i’m
on a world wide one too - but i’m
a positive person and 30% does not come back and survived beyond 5 years so i would like to connect with UK people but sorry to ask are there any other positive people on this group as i have researched and spoke to people that are 7-10 year survivors and going strong ! Thank you **
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I’m not the patient but my husband had Acute myeloid leukaemia (AML) & I’m hopeful that someone will come along to post soon who can share experiences with you.
A big warm welcome to the forum though. It has been an incredibly supportive environment for me over the last few years and hope that you find the same.
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Hi @JoBurns1 and a big welcome to the forum.
Wow, 8 weeks was very quick and must have come as a real shock to you. How are you doing?
I remember when I was first diagnosed with lymphoma, my emotions were all over the place and I couldn’t process what I’d been told, especially as I had felt so well! .
Dr Google became my friend for a while and all I wanted to know was the statistics. Often, when you read online the information varies and so do the survival rates. However, it’s so hard not to look isn’t it! From joining forums such as this as this one and learning about other people’s journey’s, it became clear that this varies so much from person to person and changes as treatments develop.
I’m sure there will be other forum members who can share their experiences with you and that you find value in being around others who understand. It’s a place for you to say how it really is for you. If you do need to talk things through, remember the support line is a phone call away.
Blood cancer information and support by phone and email | Blood Cancer UK
I look forward to hearing more about you.
Nichola 
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Hi Nicola
Sorry i’m new to this and still in denial to a certain extent, not sure how I get back onto the main page - if there is any way you can send me a link I can reply there x
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Thank you so much how do I get back on the main page sorry
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Hi Nicola i’ve found it !! Yes apparently I have AITL and so far it’s been too negative - it. may be rare but 30% of people it doesn’t return - and 5 years down the line new drugs are coming out all the time - it’s the hear and now we deal with and tomorrow I start my first chemo - i will be a positive focused support for anyone that wants to be the same - it’s proven that a positive mindset is very beneficial and you can eat yourself free of disease along the way - happy to share details if anyone would like - 7 weeks ago i felt stronger and fitter than ever - it makes no sense to me at all except I will beat this x
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Well done for finding it. That’s sometimes a challenge in itself. You’ll get used to it!
Everything has been a whirlwind for you.
I hope tomorrow’s treatment goes ok.
When you are up to it please let us know how you get on tomorrow.
Be thinking of you and sending positive thoughts you’re way x
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Thank you so much I will . I’m so pleased you’ve called it Surviving AITL x
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I have met a person with AITL when I was having Brentuximab chemotherapy due to another kind of T Cell Lymphoma that I have called Mycosis Fungoides .All of the T Cell Lymphoma and Leukemia is pretty rare and you wont encounter many folk with any of them.I believe that the 3 most common types are AITL ,Mycosis Fungoides and Large Cell Anaplastic.I had to have a Stem Cell Transplant because of the one I had and the person who had AITL told me that they were conditioning her for the run up to a Stem cell transplant which I assume has been done by now?
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Thank you how are you doing ?
Still around but the Mycosis Fungoides is slowly coming back so I think that the treatments slow it up but without medical assistance I’d probably have died by now as it caused huge tumours on the skin which always became infected.I think that even a Stem Cell Transplant only has a 50/50 chance of working.I had to have a finger amputated due to the tumours!I had never heard of these T Cell Lymphomas before I developed one .
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Oh i’m so sorry to hear your story - they are working so hard on finding treatments for T Cell we can only stay positive and fight this disease , I’m still in denial even after first chemo lets keep positive and looking forward x
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Most Lymphoma is B Cell and fairly well understood but only about 9 percent of them are T and NK Cell.I had various chemotherapy treatments and none had any noticable positive effect but obviously you can’t say what would have happened without them.Radiation certainly has an effect on the tumours and works but I don’t know if you can keep on having it for your whole life as you may end up with Melanomas to add to your woes!
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