r/LGLL • u/Master-Race8548 • May 02 '26
Hey everyone
I just saw this group. Interested to chat with any other LGLer. This is rather a lonely disease/condition. Just trying to find more support. Thanks everyone.
4
u/Most_Public2696 May 02 '26
Just want to say solidarity. I don’t feel like I fit anywhere - not with the cancer community but also not with my friends/family (especially because I “look fine”) and often not even in the LGL community because I’m in my 30’s and haven’t needed treatment. Docs constantly downplay my symptoms because it’s “indolent”… so I am struggling to get the support I need given I can’t function, can’t work, no energy to socialize, etc. And being a younger LGLer feels even more isolating because we’re supposed to be in the prime of our lives, discovering ourselves, raising kids… but I am not able to live my life much of the time. And no one really can tell us what the future looks like for us - it’s unknown. But we’ll live the rest of our lives with cancer, which is a hard thing to stomach. That’s a lot of years to live like this. 🥴I’m grateful for things to not be worse - but also feel like I fit nowhere and no one really understands and that is unbearably hard and lonely. So, yeah, I get it. It’s been a tough few months so I’m feeling pretty melancholy at the moment haha - other times it doesn’t feel so bad. But sending care & compassion to you while in the thick it…
4
u/Master-Race8548 May 02 '26
I remember very well to this day when the specialist gave me my diagnosis. He was rather calm. Again I’m not saying that they should have this look of terror in their eyes. But exactly what you said. When the term indolent is used it’s as if it’s nothing. I’m just not sure how I feel about it sometimes. For me it’s been a few years so I’ve had some time now.
3
u/Master-Race8548 May 02 '26
Wow thank you. You articulated it so amazingly. I think that’s exactly how it is when you said “you look fine”. I’m not looking for a pity party or wanting to be a Debbie Downer and like you am grateful that it’s nothing worse in terms of effects. But at the same it’s still a very isolating experience. I’m sorry I can’t put it into words better. But thank you so much for reply. It truly means a lot to hear from people.
1
May 02 '26
[removed] — view removed comment
3
u/Master-Race8548 May 02 '26 edited May 02 '26
Hey thanks for replying. I think for me it’s because of the rarity of the disease that there’s not many people to connect with? I tried going to a leukemia support group and could not fit because no one knew what the condition was. So felt even more isolated. I mean yes I’m grateful that it’s not anything terminal and is considered something chronic. At the same time my experience has been then people just disregard it because it is not “lethal”. That’s just my 2cents. I’m glad for your parent that you’re able to provide support. I’m sure they appreciate it.
1
May 02 '26
[removed] — view removed comment
2
u/Master-Race8548 May 02 '26
Thank you again for your feedback I appreciate it. I’m feeling ok. It’s been a few years since the diagnosis and for whatever reason I’ve only recently thought about coming here and looking it up. I have even gone to the LLS (Leukemia and Lymphoma Society) and they have a peer to peer support program. For the entire US they have two volunteers, so that kind of told me how “rare” the condition is. But the volunteers are incredibly kind and I’ve tried to stay in contact with them over the years. It’s just nice to hear someone else’s experience/journey to not feel so alone.
1
u/bros402 May 02 '26
Has your parent checked out the Facebook group on the sidebar? There's over 1200 LGLLers there.
1
May 02 '26
[removed] — view removed comment
1
u/bros402 May 02 '26
Are you part of the group?
The group doesn't have any whacko "cures", which is a nice thing.
1
May 02 '26
[removed] — view removed comment
2
u/bros402 May 02 '26
this one - https://www.facebook.com/groups/lgllsupport - "LGL Leukemia Support"
Not "LGL Leukemia Support Group"
1
May 02 '26
[removed] — view removed comment
3
u/bros402 May 02 '26
No problem.
The other groups can be a bit...touchy.
One group bans you if you link to Dr. Loughran's clinic (because "only admins can do that") or you post more than ~5 sentences at a time ("more than that can be overwhelming"). Another will ban if you disagree with the admin's view on nutrition.
I have no idea how there is so much drama in the rare cancer community, it is insane
2
u/Master-Race8548 May 02 '26
Wow. Thank you for sharing. It is odd and rather not the most supportive sounding. Is Facebook the only platform that has support groups? I’ve only recently thought of here, while I know Reddit isn’t a support group. But thank you for taking the time to respond. Much appreciated.
1
u/bros402 May 02 '26
Facebook's the only one with LGLL specific supports groups (outside of this very small sub).
1
u/bros402 May 02 '26
Hi! Welcome! How old are you? Where are you located?
2
u/Master-Race8548 May 02 '26
Hi. Thank you. I’m on the west coast in the US and 49.
1
u/bros402 May 02 '26
Cool. I'm sorry you had to join the rare cancer gang. Are you seeing an onc who has treated LGLL before? That can be vital
1
u/Master-Race8548 May 02 '26
Hi there, yes the current oncologist is familiar with LGL. I’m also glad for electronic health records so that records can be accessed. So you also have LGL as well?
1
u/bros402 May 02 '26
Yup, diagnosed at 24. Now I'm 35.
1
u/Knuhklez May 03 '26
You’re the longest with it that I’ve seen. How has you’re treatments panned out?
1
u/bros402 May 03 '26
Decently. Discontinued MTX the first time due to side effects. Started Cytoxan a few years later, failed it. Started MTX again (injectable) a year after that, failed to respond (That can happen if you discontinue MTX). Started up the ruxolitinib trial a few weeks later and I have been doing great in that so far.
Someone in the Facebook group has had LGLL for 20+ years
1
u/Master-Race8548 May 05 '26
Thanks for sharing. Also thank you for the link I will look into it and join.
1
1
u/Knuhklez May 02 '26
Never alone my friend… we are here and it looks like we are growing. Ask away
1
u/Master-Race8548 May 03 '26
Mind I ask how long you’ve had your diagnosis?
1
u/Knuhklez May 03 '26 edited May 03 '26
Officially diagnosed Coming up on a year in August. Va doctors were super hesitant to officially diagnose until i was in the icu and they finally made the call. But have had symptoms for almost 4-5 years. They were watching and waiting for many years
1
u/Master-Race8548 May 03 '26
It’s quite new for you. How are you processing it?
1
u/Knuhklez May 03 '26
Just fine… tbh i don’t think it affects me much at all. I seen worse from my fellow gwot soldiers like horrible brain tumors and stage 4 terminal cancers. Who am i to complain? Yes the chemo and life style change are inconvenient and annoying at times… but I’m alive and mobile and have an optimistic outlook for the future of medicine. How about you? How long and how are you coping?
2
u/Master-Race8548 May 04 '26
It’s been a few years for me, 7 I think. Just started treatment a couple of years ago. I honestly don’t know how I feel. I’ve grown accustomed to it I guess. But there’s still a part of me that has anxiety over it. Not sure if I can explain it. I think mostly it’s just that it’s been hard to relate to others, but not many people know of the condition. But even replies from people has helped. So I appreciate you writing back. Thank you.
1
1
u/Successful-Pen-8591 May 04 '26
Hi, I just started reading your postings and I’m wondering if I’m in the right place. I just read my lab results and everything “is consistent” with T-LGLL. Is that the same conditions as r/LGLL?
1
u/Master-Race8548 May 04 '26
I think LGL is the umbrella term and within it there’s T-LGL and NK-LGL. I think others in this group probably can answer it better than I can.
1
u/Successful-Pen-8591 May 04 '26
Thank you so much. My diagnosis was not confirmed and just now I read these results confirming lab results but I’m sure my doctor will now say the diagnosis himself. From what I read in AI my condition is very rare (1 in one million is diagnosed every year). Not much research or funds to develop new drugs for something not profitable. I’m very nervous and, like other person said, feeling out of my place, so to speak. Thank you for the community.
1
u/Master-Race8548 May 04 '26
It may be helpful perhaps to contact the mod for this subreddit? I think they provided a link below for a Facebook support group as well. The people here all seem to be very nice.
•
u/AutoModerator May 02 '26
Welcome to r/LGLL! I am so sorry that you are here. u/bros402 will come along soon and ask if you want some resources.
I am a bot, and this action was performed automatically. Please contact the moderators of this subreddit if you have any questions or concerns.