Monomorphic Epitheliotropic Intestinal T-cell Lymphoma (MEITL)

Hi Nunggas and a warm welcome to this corner of the Community although I am sorry to see you joining us and to hear about your husband's MEITL T-Cell Lymphoma....... and yes it is one of the many rare types of T-Cell.

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

I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my T-Cell Lymphoma ‘types’ are different I most definitely appreciate the challenges of living with and being treated for a rare type of T-Cell Lymphoma.

Where are you based Nunggas  ......... are you in the UK?

I did a search through this Community for any posts about MEITL and I only found one post from a good year back but unfortunately this journey did not turn out being positive.

Always around to chat or help out as best as I can.

Thank you Mike yes in the UK my concerns are around our local healthcare provider and inexperience of this sort of cancer.

Hi again Nunggas ……. when it comes to some types of T-Cell Lymphomas some Consultants will not have seen some of the rare ones.

I was fortunate as my first Consultant had treated one other person with my first type but 14 years on when my second type appeared that brought a massive challenge so my clinical team in Inverness sent my case out for review specifically to Guys & St Thomas' in London and The Beatson in Glasgow and with their input a plan was put together (See my story)

You need to be challenging his clinical team to be referring his case to centres of excellence.

Getting the best from his team and each appointment is important so have a look at these links…

Top tips for getting the best from your appointments

Questions to ask your medical team about Lymphoma

I also volunteer for Lymphoma Action. Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.

I just checked the posts in one of our various Support Platforms… and I found a few posts referring to MEITL so I recommend you check these out.

We also have a great Buddy Service where you can be linked up with someone who has walked the same or similar treatment journey both as patients and caregivers.

The LA helpline is open every week day from 10 till 3 on 0808 808 5555. This is a safe place to talk things through and get support.

Always around to help more ((hugs))

Thank you so much for giving me some great advice my heart goes out to you x

I see that you have put up a post in the LA group and I put up a reply…… so let’s look for you to get some replies.

As for me….. I am 9 years out from my last treatment, I turned 69 last month and I am living great life ((hugs))