new to Group

[Jayhawker]

hello,

I’m

New to this group. I’m hoping for some basic information regarding how you live with leukemia.

I have chronic kidney disease. I received a deceased donor transplant 13 months ago. My transplant team has had real difficulty dealing with dangerously low white blood cell count. I’ve received numerous Neupogen injections. Thankfully my EBC count has been in the low average range, where they want it, since early August. I administered my last Neupogen injection on July 29, 2023.

I picked up CMV from the donor organ. (I was CMV- pre-transplant.) the CMV has recurred 4 times since early May of 2023. However, the last 5 weeks the CMV has been in check. But my lymphocytes have skyrocketed while my neutrophils have plummeted. I also have anemia.

My nephrologist horde red a leukemia blood smear test. The results show that I have T LGL leukemia. Of course, I’m both shocked and stressed out about this diagnosis. I’ve been referred to a hematologist oncologist but have not yet heard from his office to set the first appointment.

The questions running through my mind are unending. But most importantly, is this generally a treatable condition? How fast does it progress? What is life like with this condition?

Thank you for taking time to read this post.

Jayhawker

[Newdawn Administrator]

Hi Jay and welcome (if that’s your actual name, you’ll need to restrict your post to the community to preserve your privacy),

I’m so sorry you find yourself in this position. I was a little confused when you said you received a ‘deceased’ donor transplant because I wasn’t sure if this means from a deceased donor or you mean ‘diseased’. I suspect the latter given the rest of the detail.

In truth, I don’t personally know much about your particular leukaemia even though fundamentally it also affects the lymphocytes. For our members who may be similarly unaware, here is an explanatory link;

lls.org/leukemia/large-gran...

‘Large granular lymphocytic (LGL) leukemia is a type of chronic leukemia affecting white blood cells called "lymphocytes." Lymphocytes are part of the body's immune system and help fight certain infections. LGL leukemia is characterized by enlarged lymphocytes, containing noticeable granules, which can be seen when the blood is examined under the microscope. There are two types of LGL leukemia: T-cell (T-LGL) and natural killer cell (NK-LGL). Each type may be chronic (slow-growing) or aggressive (fast-growing).’

Because of the variation between CLL/SLL and LGL, it’s difficult to advise you specifically on treatments and approach. However, the symptoms are very similar to CLL and members here will be able to advise on living with leukaemia generally.

You seem to be in an information gathering stage at the moment awaiting your first appointment with a haematologist/oncologist. I hope you receive that soon because your obviously have questions which are specific to your condition and co-morbidities. I’m just aware that advice (especially prognosis), as it relates to CLL may not fit your particular leukaemia. Please ask your doctors/specialist nurse if there’s a support group specific to your situation or literature to guide you.

I’m sorry that’s not particularly helpful but I wanted to almost pre-warn you that our members may not fully understand the variations of your diagnosis though we all understand the emotional devastation of receiving any blood cancer diagnosis.

Wishing you well and hope you receive the support and advice you need. Hoping too that you have a more chronic, slow moving form that doesn’t require swifter treatment.

Newdawn

[Jayhawker in reply to Newdawn]

Thank you for your response. My new kidney did in fact come from a deceased donor meaning that the kidney was harvested after the donor had passed away. I have no reason to believe that my T LGL came from the donor kidney. The CMV virus came from the donor kidney. I believe that the T LGL has caused the difficulties I’ve had with dangerously low white blood cell count and inability to pull the CMV in check though.

I do realize that the T LGL I have is first rare and second different than other forms of leukemia. In fact, T LGL seems to be so rare that it’s difficult to find support groups for that form of leukemia.

Again, thank you for responding.

Sincerely,

Jayhawker

[CoachVera55]

Hello Jayhawker, welcome 🤗 Yes I am sorry about Leukemia complicating your already complicated situation. I have a 28yr old son in stage 3 kidney failure & I was intrigued with your tenacity to continue working through that journey. It almost seems like you get over one hurdle to be hit with a next, smh 🤦🏽‍♀️

I do believe that all your strength to deal with your first illness will come in handle for this second battle. I also pray that its slow so you can learn all you can & have many options afforded to you.

I only know that we must live as healthy as possible & minimize stress amap. I have CLL Leukemia & had been in Wait & Watch stage for 13yrs 8mos. I started BTKI Therapy 7 months ago & it was bumpy at first until I took a more active part by listening to my body.

I am still adjusting but I limit my exposure to people, especially crowds, I stay masked around anyone & I don’t eat with anyone. I just went to a resort with my family & we had a great time. I drove down alone, had my own room & ate there but otherwise we hung out & gambled, seen a show & just caught up in person. Most stuff is virtual for me or outside where I feel more safe. Managing my anxiety is as important as managing this disease for me. I pray that you get some answers to your questions & sometimes being pushy helps IJS 🤷🏽‍♀️

It’s important to get a specialist as well as a local Oncologist since this is a rare disease #GODSPEED🙏🏾

[Jayhawker in reply to CoachVera55]

Thank you for responding to my post. It’s encouraging to hear how you manage your leukemia and yet interact with family and travel. It gives me some hope as well as ideas regarding how leukemia can be effectively managed should I be fortunate enough to have the slow progressing form of T LGL.

I currently mask whenever I’m out of my house. I live alone so have limited contact with people other than virtual contact. I’m a university professor but teach solely online. I attend all campus meetings virtually.

Kidney issues run in my family so I grew up with family members who had chronic kidney disease. Consequesntly, it has been somewhat easier for me to manage proactively. However, there is no cancer on either side of my family. I find my stress level for this is much higher than it has been for my CKD. That’s likely due to lack of knowledge… Hopefully as I learn more I’ll be able to calm my stress level.

Jayhawker