Last year I was diagnosed with T cell- Large granular Lymphositic Leukemia.
At present I am on watch and wait, as the change in my stats is only slight. However, in November I was finally, officially diagnosed with primary Sjogrens, which seems to fit the profile with this type of cancer. My rheumatologist has put me on hydroxichloroquine, twice daily, which apparently takes around twelve weeks to really start working.
My haematologist increased my dose of Gabapentin to 600 mg , which has helped with the hot sweats.
My rheumatologist thinks the hydroxichloroquine, when it gets going, will help the awful fatigue.
I would be pleased to hear from anyone else with LGLL, because it is so rare there aren't many people with it.
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Penn691951
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Hi, and welcome to the board. I hope things are going OK, and the medications are helping. I don't have LGLL, but I just wanted to say hello, and that I hope you do find some fellow travellers here, it's a great board.
Hi, I have CLL and I am on watch and wait, but I just wanted to say hello. As you say you have a rare diagnosis and what I have noticed is that whatever our diagnosis many of us share the same fears, anxieties, emotions, thoughts and practicalities, so please do not feel too isolated we are all here to support each other on this site. If you would like to talk to someone the Leukaemia Care Charity helpline is open Monday - Friday 8.30am until 5.30 pm and they have a special evening service on a Thursday and Friday 7pm - 10pm. The number is freephone 08088 010 444. Take care and stay safe.
Just discovered your post with some excitement, I have to say - sorry it took so long! & yes, we are a rare breed are we not! I don't know about you but I've been following the slightly less specific (is that true?) threads relating to CLL, & I still don't really know how relevant & useful they are to us LGLL'ers! My 'journey' with the condition began with rheumatology issues back in 2017 & I also, on this site, follow some rheumatology groups because of the connection with the medication Methotrexate, something I have tried in the recent past. Is that something you're familiar with? I need to do some research into Sjogrens, it's not something I've been aware of.
I'll try to keep this brief (I will fail); I'm 53, male, UK based & have been mostly watch & wait for the past six years or so. I had some issues early on with night sweats & some minor infections, but they came & went & I've experienced much of the time with the luxury of feeling almost able to forget the condition & live pretty normally. Apparently some people experience anxiety when NOT offered treatment early on to tackle their condition, I'm the opposite... I've had a very 'arms-length' relationship with T-Cell LGLL & I think that's suited me fine.
About 3 months ago it was suggested I start treatment (above mentioned Methotrexate, along with the attendant antibiotics, etc) & it sent me into a bit of a tale spin to be perfectly honest - I now had the belief that this was something that I needed to take far more seriously than I had been. This decision was based (mainly if not exclusively) on my low neutrophil levels. I resorted to Dr Google &, quite separately from the pros & cons of the treatment decision, learnt that I was DOOMED (like so many others CLL'ers do; it has been this site [HU] that has provided me much needed reassurance in the recent past, for which I'm intensely grateful!). Spoiler alert: we are NOT doomed, btw.
A slight deviation, apologies, but key to my situation as it stands: my biggest problem of the last three months or so has been anxiety & stress, more a difficulty for me than the leukaemia by quite a distance. Initially resulting more from Covid/lockdowns than the chronic illness, but exacerbated by the treatment decision above & my subsequent online 'research'... In fact I took the Methotrexate treatment package for only one month before it was suspended because of the anxiety I was experiencing - it was agreed I should try & sort myself out on that front as a priority.. 😵💫 Probably not a bad idea..!
How have things been in that respect for you, if you don't mind me asking? Our rarity can feel quite isolating at times!
Anyway, a bit long-winded so sorry about that, I think I needed to offload(!). Hope you're doing ok & keeping on top of things - would love to hear how you're getting on. Are we really the only LGLL cases on here?!!
Sorry only just read your post. I had stopped reading because it never connected with me and I think CLL is different.
I too have the hot sweats but my main symptom is extreme fatigue. I have had a lot on, my husband was diagnosed with bowel cancer indeed we are going back today for “ the “ meeting! He has had half his bowel removed and a stoma so we know things are bad and he already has IPF…
Anyway, back to you I think you should speak to your team and listen to them the stuff on the internet is scary but you need support from proper channels.
I’m seeing my consultant next week and my neutrophils are now coming to the point where I too will have to have treatment.
Thanks for your response; very good to hear from you!
It sounds like you do have a lot on your plate, it's hardly surprising you're feeling fatigued. I hope the meeting today went ok & that you & your husband are getting all the support you need. I shall certainly be keeping you both in my thoughts & wish you all the very best.
I'd love to be kept up to date on your progress with your treatment, etc., should you wish to do so, & if I have anything of significance/interest to report I will do the same.
For now, again all the very best & thanks again, for being there, I guess!!
It went ok, they can’t do chemo on him because of his fibrosis. But they think they have got it all , having taken half his bowel…. Anyway, we feel better and are just going to be positive. They will monitor him every three months.
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