I received some bad news earlier this week.
My nephrologist had run some additional tests to see why my lymphocytes were coming in so high on my CBC tests.
The tests revealed that I have T LGL leukemia. I have been referred to a hematologist oncologist but have not yet received a call to schedule an appointment.
well, that’s all I can say about this situation right now.
Jayhawker
Positive thoughts and prayers coming your way! So sorry you are having to deal with all of this now!
FYI: I do have a friend of mine back in WI, that is 5 years out from her kidney transplant. She was diagnosed with the same type of Leukemia as you about 2 years ago. She has no sign of it today. Hugs, that the same will be true for you!!
I hope to hear from the hematology oncology specialist’s office soon to get an appointment scheduled. Until I get in to see him, I have no idea how bad this is. I’m hoping for some positive news of some sort.
Jayhawker
So sorry about more negative new, but I'm also hopeful that you will get news from the hem-0nc specialist. Please keep us posted as we pray and wish nothing but the best news for you. Hugs and lots of love ❤️
I am sorry that you are getting this serious news. Please know I have you in my thoughts and prayers. Stay in touch if/when you wish to in case someone can give you some ideas if you wish to receive advice. Big hugs
Update:
I saw the hematology oncologist this afternoon. He spent a lot of time with me-about 45 minutes.
Key points:
1. What I have is extremely rare. There have only been a few studies looking specifically at T-LGL leukemia in solid organ transplant recipients. One study involved 18 patients. The other involved 8 patients. He shared what he does to treat T LGL leukemia but emphasized that there was a lot we don’t know about this form of cancer and it’s effect on solid organ transplant recipients. However, the treatment protocol includes discontinuing Myfortic. Continuing Prograf and prednisone at the dosages I currently take. So no treatment changes. Basically, transplant recipients already take the medications used to treat T LGL leukemia.
2. While my neutrophils are low and my lymphocytes are high he’s not going to start treatment yet. My neutrophils would need to be below .5 and mine are currently stable at 1.89 so don’t yet require treatment. He said my lymphocytes are high due to the T LGL. The lymphocyte data includes leukemia cells which do not cause organ rejection episodes. I’m not fully understanding this right now but am just glad to hear that my elevated lymphocytes aren’t posing increased risk for organ rejection.
3. He noted that my CMV is now in check specifically because I’ve been pulled off Myfortic. He would have pulled me off Myfortic if I was still taking it. (The infectious disease doctor I saw several months ago got this right!!)
4. He said that Neupogen doesn’t work effectively to raise white blood cells in leukemia patients. That’s why it hadn’t worked effectively for me. Also the extreme and prolonged bone and joint pain I experienced while using Neupogen is typical for a person with T LGL leukemia.
5. In summary, the T LGL leukemia is at the center of the difficulties I’ve been experiencing. Everything makes sense now.
He says that my T LGL data looks very good. He’s going to run some labs to determine whether I have an autoimmune disease. Apparently many persons with T LGL leukemia also have an autoimmune disease, most frequently rheumatoid arthritis.
He’ll talk with my nephrologist emphasizing the importance of no longer prescribing Myfortic.
He will monitor me with labs every 4 months.
He does not see this causing a problem for the kidney.
We’ll talk about progression in my appointment in 6 weeks after he’s gotten the lab results back. However, he emphasized that T LGL leukemia generally progresses slowly. Th e mean length of life following diagnosis is 9 years with many patients living longer than 9 years. Most have data much worse than mine at diagnosis. Mine was found early specifically due to the kidney transplant. Further, since so few people who receive solid organ transplants have T LGL, he can only guesstimate on progression—this just hasn’t been studied.
I’m relieved to know that my elevated lymphocytes aren’t dangerous for the kidney and that my low neutrophils are not yet low enough to require treatment. I’m thrilled to understand what has been going on—my data truly does make sense now. This has automatically lowered my stress level just understanding what has been causing such unusual treatment data and treatment responses for me.
Several of you have asked in private messages if this leukemia has come from the donor kidney or the CMV. No, it has not come from either. It was in my body before the transplant but my immune system was handling it. The immune system suppression post transplant set the stage for the T LGL to flare up. (This is my current understanding.)
Obviously I have more to learn. But it’s clear I’ve got a competent and engaged oncologist. It’s also clear why the transplant center has been struggling with my case. This is so rare it would never have been something they would have expected. However, now that they know and have a good specialist on the team, I expect they will move forward with greater confidence. It has taken them considerable time and caused much frustration; however, the transplant team has more or less defaulted into the appropriate treatment plan to support the kidney effectively within the context of my T LGL leukemia. It has just taken a lot of time and they haven’t been confident that what they are doing is appropriate for long term transplant management. The oncologist was very clear that the treatment plan they are now following is exactly what he would prescribe; it is appropriate and will support the donor kidney while also treating the T LGL leukemia.
Well, that’s the update. I’ll post a little more as I learn more over the next few months. However, please note the rarity of my situation. It seems likely that no one in this forum will experience what I’m experiencing. So I appreciate your support but would encourage you not to dwell on this as I can’t imagine any of you will encounter it. So, please do not worry about this becoming an issue for you as you pursue transplants.
Jayhawker
OMG! Resolution!! How wonderful this is...just to "know" what's going on and to be surrounded by a caring and compassionate of team of specialists. In the decade(s) ahead, research and treatments will continue to evolve. May peace and a great quality of life continue to come your way. Thanks so much keeping us in the loop, we're your family!
I’m so sorry. Sending you healing vibes
Sending prayers.
Praying for you.
I really hope you hear soon from the hematology oncologist. And that the news will be positive... Please let us know the outcome if or when you're up for that. Also, please reach out anytime. We care about you. Sending hugs and prayers.
so sorry to hear this Jayhawker! Keeping you in my prayers. Please keep us updated❤️
Heartbreaking news. Im so sorry to hear about this, fellow warrior. If its any consolation, a close family friend of mine lived with leukemia for several years and only just recently passed at about 80 years old. I hope you have the same kind of good luck. Here for you in the meantime!
I am so sorry to hear this- hopefully your treatment plan will be short
Sending positive energy .
My heart goes out to you, Jayhawker. You will be in my prayers. NOTHING is too hard for my God!
So sorry to hear this Jayhawker. This is the last thing you need. However once you get over the shock, you will fight this in the same way you have with your kidney issues. Remember we are here for you. Even if you just need a rant. We might not be with you in person but we stand with you. Keep fighting xx
I am so sorry Jayhawker that you are going through this. I will definitely be praying that you get some good news.
I’m so sorry to hear this. I’ve been praying for your CMV, now I will add this.
🙏🏻 My thoughts and prayers are with you.
Stay away from googling it or you will be confused. A LOT of mixed info on it. Praying for you. A friend of mine was diagnosed with that same cancer 10+ years ago.
Thanks for sharing this somewhat promising news about your friend.
I’m googling solely to find the top hematology oncology specialist in my area. I’ve found him and have contacted him to set an appointment. I’m hoping he can see me for an appointment soon.
Jayhawker
One day at a time...keep us posted...Sending Positive Thoughts..
You have been on my mind (and lots of others’ minds )all morning. Hoping you get an appointment soon. You are thoughtful, resourceful and know how to advocate for yourself. That is half the battle sometimes. Take this one day at a time. Sending hugs and hoping for the best possible outcome.
I just heard from KU Med where I was hoping to get in for treatment. They are nationally ranked for their work with cancer. They have a hematologist oncologist who has worked at the top leukemia treatment center in the nation. He specializes in LGL leukemia including T-LGL leukemia like I have.
I should get a call from a nurse to officially schedule me today. Fingers crossed that he’ll have time to see me.
Jayhawker
KU did call.l early this afternoon. I have an appointment with the specialist I was hoping to see. The nurse was able to review all my testing data from St Luke’s. Apparently these hospitals share patient records with each other.
She initially set my appointment for January 17th after confirming that the type of leukemia I have is slow moving. She called back about an hour later telling me that the doctor had an opening on January 5th. I took that time slot.
Given KU’s national ranking with cancer treatment I have much more confidence in working with them on this leukemia situation. Further, the specialist I’m seeing has trained at the top leukemia treatment center in the nation. He knows leukemia and networks with the top leaders in the field. Internationally. My case will be in good hands with him.
So, Cindy, my kidney, just needs to hang in there until early January… I don’t know what I have ahead with all of this, but I know I’ve got the right cancer treatment team involved. It should be a calmer weekend for me this weekend.
Jayhawker
That’s great news. Especially getting your appointment moved up. Hope you are able to relax some now. It sounds like you have arranged care that you can have confidence in. You are in good hands.
hugs for you and keep kicking butt
Prayers.
I'm sending you virtual and heartfelt hugs and good wishes. Stay strong and positive!
I am sorry to hear of the new diagnosis. Cancer is a scary word but fortunately, cancers are equally deadly, or difficult to treat. You have been so strong and proactive in getting all the fighting tools in place. With your tenacity and strength, I have no doubt you will overcome this new obstacle. I stand with you and continue to send you healing dust!
The hematology oncologist’s nurse told me yesterday afternoon that the T-LGL leukemia I have is one that progresses very slowly. She said that it often needs no treatment initially but may either now or in the future need chemo. She was good at providing some basic information as well as reviewing the tests that have already been run.
It was clear that she’s worked with lots of patients immediately following diagnosis; she knew what Imy pressing questions would be and spontaneously provided that information. That together with the training, experience, and specialization of the doctor I’ll be seeing has greatly eased the stress I was experiencing. I slept much better last night.
While I’m not glad to have this new issue it is now clear what has been causing issues for me over this past year with the new kidney. At least everything is making sense now. Let’s hope that my new oncologist will be able to get this slow orogtessing cancer in check and by doing so we’ll see my renal data truly stabilize. I’m 70 years old. The nurse told me that most patients live at least 10 years following diagnosis with this type of leukemia. I asked what their quality of life was like. She said good. Most don’t die from the leukemia. Instead they die from a severe infection they develop when their neutrophils are low so it’s a matter of protection from getting an infection... she emphasized that the form of leukemia I’ve got is not as concerning as many others.
Jayhawker
Reassuring that you are getting good info from experienced professionals. Glad you got some rest and are feeling a little less stressed.
Sending prayers and hugs. I am always worried I will get cancer since I already had cancer once. You have this and be as proactive as you can! Always ask questions even if you feel like your being annoying. Plus if yiu feel something is not right keep saying something tell someone listens to you! Hugs
Sending you prayers Jayhawker🙏 And like everything else this cloud too shall pass🙏🤞😇 you are an inspiration🙏
Hope the news you continue to get is encouraging. As others have said, one day at a time. Sending love.
Maybe I'll see you at KU Med since that's where I'm doing the kidney transplant...well when I gain some more weight.
Wow, I'm just seeing this post for some reason. Dang, life just keeps gut punching. But as always, you got this! Right now, the mental battle is having way more effect than the physical, which is totally understandable, so be kind to your self! Go get pampered a little somewhere. Treat the mind and soul.
Yes, the mental battle is clearly the major issue at the moment. I’m trying to do stuff to relax
Fortunately the University of Kansas basketball season is starting. I’m quite the basketball fan. That takes up a fair amount of my free time from January through March Madness. I watch a lot of teams, not just the Jayhawks.
Plus the KC Chiefs are having another good season this year. We’re hoping for another Super Bowl appearance. My neighbors a and I frequently get together for some of these games.
Jayhawker
That's EXACTLY what I'm talking about! Do NOT let this take the wind out of your life. Enjoy each and every one of those games with the neighbors, and all by yourself as the situation calls for. I would've never guessed you were a Jayhawks fan, go figure 
🙏🏻
Hi Jayhawker, so sorry to hear of your newest challenge but it sounds like you are going to be in excellent care. Keeping you in my prayers.
Hi Jayhawker,
How did your appointment go?
Ureteral stricture after transplant with no success after attempting stent and ballooning 
I got a kidney!!
Help! First time with active BK virus...
Help with a gift...
