T cell enteropathy associated NH Lymphoma

Hi Joolia and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups.

I don’t have Enteropathy-Associated T-Cell lymphoma (EATL) but I was diagnosed way back in 1999 at 43 with another rare (Incurable) but treatable type of T-Cell Non Hodgkin's Lymphoma eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.

It is all very complicated as there are over 60 different types and subtypes of Lymphoma with some rather rare. There rarer the type the less information is out there as you are finding.

Enteropathy-Associated T-Cell Lymphoma (EATL) actually falls into the general group of Extranodal T-Cell lymphomas

You may want to try searching the Lymphoma Action website. Lymphoma Action is the only UK Lymphoma Specific Charity.

Go to their home page and put up Enteropathy-Associated T-Cell Lymphoma or EATL in to the search box near the top of the home page and this will bring up information and papers etc.

They also have a great Lymphoma Action Buddy Service where people can be linked up with someone who has walked the same treatment journey.They also have a Lymphoma helpline on 0808 808 5555 where Sharon or Nic will be on hand to give you some support - open every week day from 10 till 3.

Yes your cancer is a blood cancer and basically can move anywhere in your body. My type was a rare skin NHL and at one point my body was 70% covered with tumours and I nad Bone Marrow involvement....... but I turned 67 last November and I am doing great (see my story through the link below).

It is important to understand that on the whole most types of Lymphoma including rare ones are very treatable.

When it comes to Staging it's important to understand that this is nothing like other cancers like, Lung, Kidney, Skin.... where a high staging is a poor prognosis.... in Lymphoma it is totally different.

As I said early on that I was stage 4 but it made no difference to the outcome all the staging did was say where my Lymphoma was in my body, helped pinpoint what treatment was best and for how long.

You will have lots of questions you want answered and this link Questions to ask your medical team about Lymphoma will help you get your top questions noted in a notebook ready for your next appointment.

Always around to chat and answer questions.

Thank you, that is really helpful and reassuring! 

I am glad that this has been helpful....... understanding Lymphoma is important and even although your EATL is rare most Lymphomas fall into basic groups and each group have a set of treatments that can be used.

So sorry to hear this. As to T-Cell Lymphomas, the enteropathy associated variant is indeed rare, being a rarity among rarities. However, it is good news that the blockage and tumors were removed, as that provided the pathologists with entire tumours to examine and not simply a sample, allowing the diagnosis to be definite. From here onward, the PET scan will tell you more. I can only imagine that some form of systemic therapy would be considered, as these malignancies flow in the lymphatic system. 

Despite the initial dearth of information, there has been much research and progress made against the various T-Cell Lymphomas in recent years. There are 28 varieties of T-Cell Lymphoma known so far, and each is considered a separate disease. At least here in the states, there is no established or defined treatment for any of the T-Cell Lymphomas. That may be different with the NHS. What is often employed is standard, classic B-Cell Lymphomas regimens. These are often not entirely successful and thus there are many newer single agent and combination therapies which "might" be considered.

Here is a link to the T-Cell Lymphoma patient INFORMATION BOOKLET from the Leukaemia and Lymphoma Society in the states. It contains a substantial amount of useful information regarding types and potential treatments.

As well, here is an information page regarding T-CELL LYMPHOMAS from the Lymphoma Research Foundation:

Again, I am in the states do not possess knowledge of the treatments which are authorized and available in the UK. One would hope that treatment is being standardised, but that is not always the case.  I truly hope that I can help in some fashion. I will say that the battle against T-Cell Lymphomas is not an easy one, but the fight is certainly worth fighting.

Kindly advise if the links do not post, as I may have a permissions problem.

Thank you for taking the time to reply. It's all very useful to read. It would be rare, wouldn't it? Kind of typical of my life. 

Because you are left-handed? Seriously, there is more hope than ever against these rare lymphomas. Knowledge is power and reading up can truly be a help.