T-cell Large Granular Lymphocytic Leukaemia T-LGLL

Hi Sprowston and welcome to this corner of the Community although always sorry to see folks joining us. I am Mike Thehighlander and I help out around our blood cancer groups.

I don’t have T-LGLL but was diagnosed way back in 1999 with a rare incurable but treatable type of skin T Cell NHL Stage 4a and although my blood cancer ‘type’ is different I do understand this journey rather well unfortunately.

Lets see if any member is looking in that has the same type.

You could do a site search using the search tool near the top and put in T-LGLL in look at any posts that come up.

Have you been given a treatment plan?

Happy to help as best as I can.

Hi. Thanks for the message. I will certainly try a search. 

it was a bit disconcerting that the type of cancer I have was not even listed when I was signing up. I had to be an “other”!  I guess that comes with being rare. I did manage to get to see research into T-LGLL on Orphanet. I am interested particularly in research into early stage treatments rather than when the cancer gets troublesome. I assume that genomic research will be the fruitful area. 

Sprowston

Hi, please don’t over think that there was no specific group for your type. We only have 6 groups covering Lymphoma but there are over 60 types and subtypes so a lot of folks can only posts in the general group

My type (a T-Cell CTCL) is a seven people in every million chance.

Obviously the rarity brings the challenges of information, treatment and research….. but based on my 22+ years journey, progress is being made in all areas and there is lots of positives.

Back in 1999 I was told I would never be in any long term remission…… Sep 2016 I was told full metabolic remission and I am doing great.

Hi. It was not the groups on the forum that concerned me but in the huge list of cancers to identify people new to MacMillan it was not there I appreciate that the forum cannot have a group for every cancer - most would have few posts!!  
The latest information I could find is that T-LGLL has  an incidence of less than one in a million. 

sprowston

Ah ok, I am sure that you have looked everywhere for information. I do know that Leukaemia Care have an online forum and a Buddy Service

https://www.leukaemiacare.org.uk/support-and-information/

Many Maggie's Centres run Heamatology support groups although most are online at the moment - our one is great and often have clinical professionals dropping in to answer questions.

Hi Sprowston, I share your diagnosis and like you have found it really hard to find out much about it. After about 4 years i am on still watch and wait with no treatment. I do find I get infections more regularly and tend to be prescribed antibiotics faster than perhaps is usual. I haven’t had Covid and am still worried about that especially after all the government letters telling me that I was Extremely Clinically vulnerable. Before covid I was beginning to get relaxed about this with every check up a formality and now reduced to one a year but covid certainly had worried me, it’s just another unknown to process in my head. Happy to share my experiences with you in the future. At the moment I feel the uncertainty is the only real impact on me of having been diagnosed with this. 

Hi HappyChap. Thanks for your post. Great that you have found me. I was only diagnosed last August and that was by telling my GP what he had to do!  I have had lymphocytosis, however, for 6 years before that. My diagnosis was given to me privately as there were no early appointments at our local hospital (although the consultant who diagnosed me is a member of our local haemo team. I had my first NHS appointment a few weeks ago and a different consultant just kept telling me that I was not going to die of it and was surprised I pushed for a diagnosis.she also told me that, contrary to my research, quite common! She gave me a review appointment for 6 months and ordered a raft of blood tests. I have already had the RA and other autoimmune conditions tested for and they all negative. I am in Norwich. 

Hi Sprowston, I hope you are well and your diagnosis isn’t stressing you too much. Nothing much has changed with me, I have had covid for the first time and we given anti viral medication because of my diagnosis, it worked brilliantly. Keep well and have a great Christmas. 

Hi I have been diagnosed with T-LGL too, it’s been difficult to find info on this cancer and in addition to this as my primary diagnosis I also have AIHA, (auto immune haemolytic anemia), and I am currently taking Ciclosplorin for the AIHA. I am told my spleen is 20cms which is getting on the large size.

Just lately, since December last year I have had repeated chest infections, as soon as I get over one infection, I come down with another. Now I have a shadow on my lung, which I assume is another infection. 
I am not receiving any treatment for the blood cancer it is a wait and see what happens, I have suggested that removal of my spleen might actually help my condition, but this is not currently an option.

This does seem to be a very rare cancer, and not much info available on how you get it. 
I find that the things I used to be able to do, jogging, walking miles and miles especially in the Lake District are now things I cannot do, because of the fatigue. I do as much exercise as I can manage, ie walking up to seven miles, but only if it’s flat and level walking. Going up any hill is just a killer for me. 
I am 68 this year, I have outlived my parents by quite a few years, I cannot get a definitive life expectancy from anyone, as it varies so much. It would be helpful to have an idea, so that I can fulfill my wish list.

Hi Ghengis. We seem to have several things in common but as always I can only tell you how this are for me and my experience. I am 69 and was diagnosed 4-5 years ago. To start with I was v stressed and confused why the consultant on one hand told me I had Cancer and on the other hand not to worry about it. I searched everywhere and found leukaemia care the most informative but even then it just said it’s rare and is unlikely to kill you but will make you more susceptible to infections and sepsis which might  I also get chest infection and occasionally pneumonia each autumn and always press for antibiotics otherwise they last for ages   This year for a change I got covid instead but was given the antiviral drugs because of my diagnosis  they were brilliant and cleared it in a few days  I also have an enlarged spleen but not significantly so apparent  so like you I am on watch and wait  I keep a spreadsheet on the key elements of each blood test to see what changes  it goes up and down and in fact the lAst one showed improvements across the board   I also walk a lot and play golf regularly however I still don’t know if finding  hills harder is LGLL or just getting older suspect the latter now. I spent ages telling the consultant I was tired more but now suspect this is just age too. I suppose the diagnosis and fear of the unknown is the most significant factor , it’s impossible not to worry but the only significant change for me has been the worry, if it changes later I will deal with it then  best wishes on the learning to come to terms with ithe LGLL adventure