Large granular lymphocytic leukaemia (LGLL)

Hi Carol, 

I've just seen your post on here & my Mum was diagnosed in 2007 with Large Granular Lymphocytic Leukemia. When did you get your diagnosis? Mum will be 82 shortly so she was 71 at the time of her diagnosis. It is very rare & ive spoken to one other person on here with the same. We're in Essex, how about you? Mum has regular bloods done to check her neutrophils but other than that, no treatment is needed. 

Look forward to hearing from you. Sarah. 

Hi  and welcome to the Online Community but sorry to see new members. LGLL is rather rare and the information on https://bloodwise.org.uk makes you 1 of 200 every year diagnosed with the issue in the UK. My rare Continuous T Cell Lymphoma (CTCL) is 1 in 600 so I do understand the issues of finding information :)

As far as I can see your LGLL is seen as Leukaemia even although it is an issue with your body making too many abnormal large granular lymphocytes in your Bone Marrow and not enough of the other types of blood cells.

As you have found this forum I am thinking your type is the T-cell rather than the NK-cell?

I have done a search of the Online Community and only found one post over a year ago by  so I have tagged her name to see if she is still on the forum. You could also hit her forum name and try the 'Add Friend' tab as this will send an email directly to her - its worth a go. 

https://bloodwise.org.uk has some good information on LGLL and can I also suggest you go to our Ask An Expert area (just under the big ONLINE COMMUNITY heading) and look for Caroline our Macmillan nurse dealing with all things Leukaemia. Send her some questions and she will normally get back to you in two days.

I also see you have joined the Leukaemia forum so worth putting some questions out.

I have been on my NHL Blood Cancer journey for over 18 years so I may be able to help you out with some questions or point you on to some information but most of all talking to someone who understands being rather rare ;)

Always around and all the best in your journey.

Hello Sarah

I'm so sorry I've only just seen this response from you. That sounds so positive. Thank you. I live in Burgesss Hill West Sussex.

At the moment I'm being monitored every 4months as no symptoms as such and judging from your mothers story, I may very well stay this way for the foreseeable future.

Thanks so much for taking the time to respond

Carole

Hi Mike

I'm a bit new to this and have only just seen these responses. Thank you so much for this information and sharing a bit about your situation. it's all a bit new to me and although there is info out there, I'm realising that because it's rare, there is only so much you can find out. I do wonder if there may be more people out there with LGLL but because it starts with not presenting with symptoms as such, maybe it goes undetected..

I will certainly do a search for anneileen, as you say, it's worth a go. I will now make sure I check back regularly to see if IV had any responses....so helpful.

Thanks

Carole 

Hi Carole, yes indeed some of the rare types of conditions can go un-diagnosed and often wrongly treated. My Dermatologist was on the ball but it did take a good year to get to the bottom of the situation.

Lets look for more hits on your post.

You can actually set to get email notification if there is any further posts - see top right of the site. 

Keep in contact.

Hello carolskianne

I have had L.G.L.L. for 5 years and have been searching for a forum to post on and just found this.. I live in Suffolk. I know that we all respond in a different way. I have had a few ups and downs but treatment is ongoing .At this moment I am quite well and gaining weight. Is there anyone else in Suffolk/Essex who I could chat to.It is very rare and I wonder what treatment regime other people with this may have been offered. I wish you well and know that all Doctors do their very best for each individual patients needs. I would be happy to speak to anyone else who may have been diagnosed just to get more information 

Hi  and welcome to one of the parts of this rather exclusive T-cell club.

For interest and also to help  and others what types of treatment(s) have you had over the past 5 years and how effective have they been?

Hello Highlander

Thank you. Initially I was diagnosed with kidney problems and have  CKD3B  with associated Nephrotic syndrome but only see my renal consultant every 6 months as my EGFR is much better. I had Cyclosporine for 5 months in the 1st year for L.G.LL. but Hospital didn't think this was beneficial. ( I was quite well then) but the 1st Bone Marrow test showed I had Myeloma so was treated for 6 months with Velcade I also was hospitilised as had Acites and Odema, this was drained.  Required platelets once and was put on very high steroids slowly reducing and stopped after 4/5 months. Please be aware as I wasn't that when put on steroids one should be offered a BISHOSHONATE treatment. I was not given this and the hospital admitted their error, I had a fracture in my leg but never had a fall, This was repaired with a DHS And was given and still on Bisphosonate bone protection

. Another bone marrow showed Myeloma had gone into remission but I now had L.G.LL. so after bloods etc and referral to Addenbrookes  still not sure so for second opinion went to Royal Marsden to be seen by a specialist there. She advised Methotrexate but said it could take over a year to have any effect. 13 blood test were taken and one showed I had E.B.V so was treated for 4 months to remove the virus with Rituxamab before commencing the Methetrexate.  During  2015/16 I had about 16 transfusions as was very anaemic. The Methotrexate started to have an impact after 14months and is working.No more transfusions.I am well and enjoying my life .Methotrexate was reduced. Have had 6 months Privogen IV. 1 a month (immunoglobumin) to boost immune system

I didn't declare all this because we are all so different and apparently Myeloma and L.G.LL is unusual, so this will not apply to other people but I still would like to speak to others on this journey .We have had immense support from the medical world and I am always grateful for all their care . 

Thank you , behind every forum name there is a story of perseverance.

Keep well. 

Hello Villager