T-Cell LGL Leukemia: Trying to connect with others

[SolidOrange]

Hello all!

I have recently been diagnosed with T-cell LGL (Large Granular Lymphocytic) Leukemia and have been in search of others with the same or similar condition/diagnosis. I stumbled upon this forum and was pleasantly surprised that there are at least a few threads on LGL in my quick search so far.

Since LGL is so rare, information regarding diagnosis, treatment options, clinical trials as well as information on existing support groups - online or offline is very limited.

I'm hoping I meet someone here and talk about related experiences with LGL. Btw, I have consulted and in touch with Dr. Thomas Loughran at Penn State Hershey who is considered a "Guru" on LGL.

Meanwhile, I took an initiative to start a "closed" facebook group just recently in hopes to let the others with LGL come together to share their experiences, feelings as well as learn from and share with their knowledge on LGL topics. So far, I have some leading leukemia patient advocates in the group and the goal is to recruit LGL patients, family members, and caregivers.

Large Granular Lymphocytic (LGL) Leukemia Group. Short link to the group: http://goo.gl/Ekzl8

If you are relevant, directly or indirectly, to LGL, would you please consider joining the group? I would love to hear from you here at the least. Thank you!

[triumphe64]

I have one contact in Florida with LGL and PRCA. My contact is on email, but I found him through another forum. I don't know if they are on Facebook, but I will let them know. The man goes to Dr. List at Moffitt. Many on this these boards are familiar with him.

I will join your group. I actually don't think the main issue is LGL, but the immune system deficits caused by various viruses and environmental factors.

[SolidOrange]

That's wonderful. Would love to hear from your contact for sure. Thank you for joining the group and making an impact right away.

[DebbieS]

I will be happy to join your group as well -- you all have been a wealth of information at such a critical time for me. I am just trying to get a handle on what I am dealing with here.
Will I ever have energy again?
Debbie

[SolidOrange]

Greetings... Thought to give a quick update.

Through this wonderful forum, we have recently gained some good number of members to the LGL group on facebook as previously mentioned in my other post. We are fortunate to see the impact of such members to the group right away.

As always, we are looking to recruit even more folks related directly or indirectly to T-Cell LGL Leukemia to this friendly and helpful patient support group. Please help spread the word. The group brochure is attached and the group's short link is listed below.

http://goo.gl/Ekzl8

Please let me know if there are any questions. Thank you!

[PamelaSP]

I was diagnosed with Tcell LGL February 2014, after years of misdiagnosis, ME, Sjogrens, Fibromyalgia, Muscular dystrophy - the list is endless depending on what speciality the consultant specialised in I was visiting.Initially a watch & wait prognosis was decided upon, and my Rheumatoid Arthritis specialist was hoping to start me on methotrexate, which would be the initial treatment for Tcell LGL.

Unfortunately my WBC has been too low (2.5 or less) and my RA doctor is not willing to take the risk of lowering it further. However things have taken a turn for the worse, my spleen is enlarged and very painful, on the latest CT my abdominal and neck lymph nodes are swollen, I feel light- headed 24/7- have passed out twice, once knocking myself out for 7 hrs, and I now have a constant headache over my right temple. Last summer I had severe leg pain and was placed on high dose morphine for 3 months- I came cold turkey off it in November, as I had lost so much weight and was sleeping 23 hrs a day. My legs are now working and the neuropathy has cleared up. My night sweats are out of control and my body temperature averages 35 centigrade.I spend all my days sat in front of the fire as I am so cold.

My question to this group is have any of you experienced these symptoms - especially the passing out and low body temperature?

My haematologist has said that I can have my spleen removed, and start chemo when the bone marrow results come back in 4 weeks.

I think that my T cell LGL has transformed, has anyone else had this happen?

[Cheryl C]

I'm so sorry to read about what you have been going through Pamela. I hadn't even heard of LGL leukaemia prior to this but have just done some reading on line. When you say "transformed" do you mean your condition has become acute?

It seems reasonably common for we bone marrow disease sufferers to have associated autoimmune diseases, due no doubt to our compromised immune systems, or is it the other way around? I also feel the cold which I think is common for MDS sufferers. At one stage a few months back on the advice of my haematologist I monitored my body temperature to see if I was having fevers, but I found I tended to hover around 35 deg too. I can't explain that.

As you will see by my signature block I can't help with knowledge or experience in LGL leukaemia, but just want you to know that here on this forum we care. Hang in - I'm sure you'll get a helpful response soon.

[triumphe64]

LGL has some overlap with Aplastic Anemia and Pure Red Cell Aplasia. If you are on Facebook, there is a Group called "LGL Leukemia FOUNDATION Support Group".

Put that in the top line and you will be a member shortly thereafter. The site referred to by Solid Orange above, no longer takes new members.

FYI: 40% of LGL patients have RA, Lupus, Sjogrens, and other autoimmune diseases. So you are not alone. Many have had long times before LGL diagnosis.

[PamelaSP]

Thankyou both for your replies, I would love to join a group purely for this illness.Please advise how? As for transforming, yes the symptoms are several times as bad as they were this time 12 months ago.Not sure if this is acute though, would have thought acute was probably terminal?I just don't know.In all the blurb it says acute LGL cannot be cured, just hope that isn't the case.

[triumphe64]

Here is the LGL Leukemia Foundation Support Group on Facebook:

https://www.facebook.com/groups/LGLL...ONSupportGroup

Here is the same group on Twitter:

https://twitter.com/LGLLFoundation

I do not use twitter myself.

The home page for the Foundation is This http://lglleukemiafoundation.org/

If these don't work, send me a PM with your email info, and I will try to help you connect that way. I think that Facebook is the best way.

[Craig PL]

Pamela

I have also been recently diagnosed with T cell LGL - I also feel cold

I'm in the United Kingdom and just beginning to try and understand this condition more

not sure how this forum works yet

Take care


Craig

[triumphe64]

Originally Posted by Craig PL

Pamela

I have also been recently diagnosed with T cell LGL - I also feel cold

I'm in the United Kingdom and just beginning to try and understand this condition more

not sure how this forum works yet

Take care


Craig

Here is the Facebook link to the group.

https://www.facebook.com/groups/LGLL...NSupportGroup/

[Margaret W]

I was diagnosed with T-cell LGL a couple of weeks ago after 44 years of an aplastic anemia diagnosis. I also have worsening liver failure due to hepatitis C cirrhosis (I got hep. C in a blood transfusion while having ATG in 1987).

I've been in touch with Dr. Loughran's office at the University of Virginia, but they don't really want to bother unless you can travel to VA. I do understand and respect that; I'm just too weak and too tired to travel. I'm about 800 miles from Charlottesville.

Margaret

[Neil Cuadra]

Margaret,

Can Dr. Loughran put you in touch with somebody local who he recommends?

[triumphe64]

Can you get to Cleveland?

If so. This is the guy to see.

http://my.clevelandclinic.org/staff/...aw-maciejewski

[Margaret W]

Thanks, all. I see Dr. Dale Bixby at the University of Michigan and he tells me he's treated 30 T-cell LGL patients. I'm fine with that, I guess... Dr. Bixby is young (he still plays hockey in a local, Ann Arbor league).

I've been to see the eminent Jaroslaw Maciejewski, M.D. Saw him in September, 2014, and at that time, he hinted that something malignant was going on in my bone marrow, but he told me he'd defer to my local hematologist. For some reason, the name of Lech Walesa came up between us and we got into quite a *discussion* about this former president of Poland. Dr. Maciejewski is really too young to have a comprehensive memory of the guy, and I'm not even Polish, but.. Well! It was, to say the least, an entertaining and memorable appointment! I will say, though, that entertaining and memorable appointments with whomever are the rule rather than the exception for me. I try to leave 'em laughing, at least.

I think right now, the liver failure from the hep. C-tainted, ATG-related transfusion back in 1987 is causing me more of a problem than the T-cell LGL is; at least, it's more painful and symptomatic.

Thanks again.

Margaret

[triumphe64]

Margaret,

Don't forget the Facebook Group i referred to someone else.

https://www.facebook.com/groups/LGLL...NSupportGroup/

I go to Dr. M myself. He is from Poland originally. His mother taught college nuclear science, so I am sure he knows a lot about Lech Walesa. I always enjoy the conversations I have with him about the non medical stuff.

I'm glad you have a good doctor nearby.

[Margaret W]

Thanks, Triumphe64. Yes, Dr. Maciejewski is an *interesting* fellow! He was discoursing on a lot of different topics at my appointment... Of course, I'm a talker, and he's a talker - my appointment could have gone on for hours but for the fact that they were turning off the lights in the clinic on us at the time. It's funny how you can meet such disparate types at the Cleveland Clinic. I've been to other clinics there where absolutely no such pleasantries were possible.

I did not know that about his mother! Fascinating!

I've been to the Facebook group's page & found it quite possibly helpful, if not something to jump right into at this point. I sent a request to join so I can see the posts.

Cheers as always,

Margaret

[Margaret W]

Wow: they sure do keep that Facebook LGL leukemia page tightly closed. I'm no computer or Facebook dummy; I can usually figure things out, but so far, I haven't been able to get past all their blocks, etc.

I'm going to forget about it for the time being.

[triumphe64]

Originally Posted by Margaret W

Wow: they sure do keep that Facebook LGL leukemia page tightly closed. I'm no computer or Facebook dummy; I can usually figure things out, but so far, I haven't been able to get past all their blocks, etc.

I'm going to forget about it for the time being.

There are two of them. The administrator of the first one died and he was the only one, So there is nobody to approve you.

So a second was started. It is called "LGL Leukemia Support Group"
Try that. If you still have trouble, let me know. It can take a few hours for the administrator to notice.

[VINCENT]

Hi all,

I got a phone call from a hematologist about 6 years ago telling me I had a rare form of leukemia called t-cell lgl.

Like many of us out there I was confused and wanted answers, so I began my search on the web. Not a big fan of FB, but just found this thread here.
I see it's been 9 years, I really do hope Solid Orange is still around and doing well. I had just joined the closed fb group (still waiting approval)

Is there anybody out there who is still dealing with this form of leukemia?
I see the last post on here was back in 2017, hopefully we can give it a bump while I wait and continue searching.

Thanks

[triumphe64]

Solid Orange passed away.
There was nobody as his backup,and his wife wanted to keep up the old one in his honor. So a new one as been started.

A couple of the administrators are friends of mine. What is you FB name and I will try to help you. Many groups ask questions to be admitted. Be sure you answer those

[VINCENT]

Hello triumphe64,

So sorry to hear SolidOrange is no longer with us. I will do my best to carry on in his honor....

When I registered for the FB group I used a different name... perhaps they think I'm some sort of troll and that’s why I haven't heard from anyone as far as joining the group. IDK.. I'd really like to remain anonymous online, especially over there.

If you could talk to your friends I would greatly appreciate it and if you need any other info shoot me a pm.
I would love to connect with others who are dealing with the same issues to compare and share.

Thanks for your response and I do hope to get to know you while I'm here.

R.I.P.
Solid Orange

VINCENT

[triumphe64]

They really are picky as to who they let in. They get many trolls.
Please answer the questions. They won't take my word.

BTW Solid Orange was a big Clemson fan. Hence the name.

[VINCENT]

thanks triumph64, i can only imagine why you use that handle