Large granular lymphocytic leukaemia (LGLL)

Hi carolskianne

I wish you well and will hope to get back to you this week. Always onwards and upward

Hello carolskianne

I was watch and wait initially. It all depends on your latest blood results. The consultant can then make  a decision on your treatment plan. I hope you have a positive visit. I will be thinking of you

I would also love to speak to anyone else who may have had L.G.LL. for a few years.

Hi Villager

I've got my appointment this Wednesday with the consultant heamotologist. I'll post again after that. Just wondering if you had any unusual symptoms after your diagnosis like unusual small spots, red rashes or similar. The trouble is you tend to attribute every odd little thing to it now but hoping the specialist can put it into perspective on Wednesday. 

Hi , this is good news.

You need to prep for the appointment so make sure you have every question that is going through your head in a note book or if you are very techie on your phone ;)

Remember and take time to listen to the Haematologist, if thy say something you don't understand slow them down and get them to put in a way you understand and always take a note of what they are say .

THEN

Get all your questions answered........ don't feel you are taking up their time, its your time and you don't want to come out and say 'I wish I had asked??'

I would always recommend you take someone with you as two pairs of ears are far more efficient.

Look forward to hear from you.

I was diagnosed with t-cell LGL Leukaemia in January this year after a very stressful six week wait for results and then a bone marrow biopsy (which wasn’t anything like as painful as they warned, not a big deal really). Consultant used a lot of medical jargon which meant nothing to me and just left me worried. I was put on watch and wait, which I am told is referred to wait and worry, with blood tests every six months and told this could go on for years. I have had one follow up visit since and very little has changed, so with the exception of being more likely to visit the gp if I get an infection I am carrying on with my life as before.

The Bloodwise page https://bloodwise.org.uk/sites/default/files/documents/Large%20granular%20lymphocytic%20leukaemia%20%28LGLL%29%20fact%20sheet%20July%202017.pdf

‘has been more helpful in understanding this than anything. 

Hi HappyChap and welcome to the Online Community, although I am sorry to see you finding us.

Any cancer diagnosis can bring a lot of stress, confusion and questions but you have found a good safe place to talking with people who are on the same journey you are on.

You will see from the other posts in this thread that your condition is rare and with this brings the lack of information.

It would be good if you join the group by hitting the ‘Join the Group’ tab just under the main group name and it is worth indicating how you want to receive email notifications when someone answers your posts.

If watch and wait...... as we rightly call it watch and worry is suggested for you, it means it is in your best interests to keep an eye on your condition and to save treatments for when they are needed. There is lots of evidence that people do just as well in the long term if they are actively monitored and have other treatments kept until they are really needed.

You will see I was on a type of W&W for 14 years before the big guns had to come out.

When you feel up to it try putting some information in your profile. This really helps others when answering. It also means that you don't have to keep repeating yourself. Just click on YOUR username, select 'Edit Profile'. Put as much or as little in your profile and you can amend it at any time - you can see members profiles by hitting our forum names.

I am Mike Thehighlander and my forum names tells you where I am from, your forum name HappyChap is a local craft beer lol.

Keep posting as it does help a lot talking with others.

I’m looking for others who have been diagnosed with Large T cell granular leukemia? 

Hi, I understand what we have is pretty rare. I was diagnosed about 20 months ago but am still on wait and watch.  What is your experience of T-Cell large granular lymphocytic leukaemia?  

Hi again, yes these rare types of Lymphoma can make it hard to connect with others.

I did a set h of the old post and found a few more of threads, you can have a look and if you want - hit reply and see if they are still looking in.

community.macmillan.org.uk/search

Good morning Happy Chap,

My Oncologist Told me it is a very rare type of cancer. My WBC count and RBC count is extremely low. I was diagnosed in August of last year. I had a bone marrow done on my spine to verify.  The first several months have been wait and see. Then in Feb of this year he put me on Methotrexate. I take 5 tablets 2.5 mg each on Tuesday each week. The more it gets into my system, the worse I feel. It totally zaps my energy. 4.5 months and I’m ready to stop it. 
he told me if one has to have Leukemia, this is the one you want. It is not fatale in itself, but with an almost non existence of an immune system you are much more susceptible to catching colds, flue etc.