Latest blood draw

Hello @prayerful4ever. Sounds like you’ve had a little change in your diagnosis with CLL. (Chronic lymphatic lymphoma). PLL-Prolymphocytic Leukemia (PLL) There are some genetic differences between these two forms of leukemia. While some of the symptoms may overlap, there may different approaches to the treatment of the disease.
What has your oncologist recommended? How long ago were you diagnosed with CLL? Was there any changes to the type of testing this time that revealed the change?

As a note about what is happening, I am on active "Watch & Wait" protocol and have not started any treatments. My latest blood draw puts my WBC at 60k.
What has your oncologist recommended? I have a follow-up to go over the new results tomorrow.
How long ago were you diagnosed with CLL? I was diagnosed in 2022, but my PCP had been tracking my numbers for 5 years prior to the diagnosis.
Was there any changes to the type of testing this time that revealed the change? No changes to the type of testing, and this is what was in the lab notes I received: Interpretation
View trends
Value
Note:
Abnormal lymphocytosis, consistent with history of chronic lymphocytic leukemia (CLL)
Some of the lymphocytes have prolymphocytic appearance raising possibility of transformation.

You’re mentioning PCP throughout your diagnosis with CLL and now PLL. Have you been examined by and consulted with a hematologist oncologist?

Yes, I have been seeing a Oncologist since 2022, but they just have me on Watch & Wait, I see my oncologist tomorrow to go over latest blood draw results.
I am just here on this sight looking for insight from others who might have gone through or are going through what I am and to find out what I might be looking at.
If I am in the wrong place, I apologize and will look for information, insight, guidance and support elsewhere.
Also, I am not sure that I have PLL, it is just what I have come up with after seeing the notes that the lab technician posted the statement: "Some of the lymphocytes have prolymphocytic appearance raising possibility of transformation."

Hi @prayerful4ever You’re in absolutely the right place. We have your back here! ☺️ There are several members in Connect who also have PLL. I found quite a few discussions and not sure which one is relevant for you. So here is the list I found so that you can choose. https://connect.mayoclinic.org/search/?search=PLL

I was just wanting to make sure you’ve been under the care of an oncologist for your CLL/PLL instead of your primary care physician. While our PCPs are great to have for our go-to physicians, they don’t always have the depth of knowledge needed for cancer care.
I know it’s difficult when blood or test results pop up in our patient portals and we have to wait for our doctors to interpret them for us. I always get antsy! Hopefully the meeting with your oncologist tomorrow will provide some answers for you and bring peace of mind.
Please let me know what you find out, ok?

Yes, you are in the right place. I have 2 mutations in my bone marrow and so far I have just had anemia (which was fixed for that time) and low platelets, which is a "wait and see" situation. An experienced oncologist is a must. I have the potential for lots of those letters after my labs and I need some one who knows what they mean and when to act. Some one definently above my pay grade. Let us know what you are going through and how you got there. We listen and we care.

I actually have not noticed anything out of the ordinary. My numbers started climbing back in 2022, and I was sent to an oncologist who told me that I had CLL and was going to have to join the "Watch & Wait" club. Everything has been pretty steady until my last three draws where my numbers are starting to move, I am starting to have swollen nodes, and now with this last draw some of the lymphocytes have prolymphocytic appearance which immediately caused me to go online to research what that might mean and I find data stating that I now only have 1-3 years to live, when I was being told that I would probably live into my 80's.
Cancer sucks.

Predictions aren't reality, so what do they know. Just curious if you have had a bone marrow biopsy. I have and they aren't the monster that they are reported to be. Be sure to ask for feed back if it comes up.

Hi @prayerful4ever I agree with @suetex, ‘predictions aren’t reality’. If I paid attention to my ‘odds or survival rate’ at my time of diagnosis with AML, I wouldn’t be here today. That was 6 years ago…with treatment, I’m cancer free.

Searching online, while there can be some great informational sites, not everything you read will be relevant to you! Each case is different. And often the ‘survival rates’ listed are for patients without treatment. Doesn’t necessarily reflect your CLL or what the survival rate could be with treatment.
CLL is one of the most treatable forms of leukemia…when necessary. You haven’t even reached that stage yet so my suggestion is to not go looking for trouble. It finds us on its own anyway. 😅
I’m not being cavalier about this, truly. But having been there myself, it’s better to wait and speak with the doctor before trying to interpret results ahead of time. And in reality, none of us know how much time we have left! So we have to live every day to the fullest until something actually takes us out! Worrying about ‘what if’ robs us of precious time.
I’ve posted this before but it’s one of my favorite inspirational quotes. I found it so helpful in daily positive affirmation:
“Fear does not stop death. It stops life
And worrying does not take away tomorrow’s troubles.
It takes away today’s peace. “

Was your oncology appointment today?

Lori, you are right on! And that quote is a keeper. It has been over 3 years since my mutations were found and one was "associated with poorer outcomes." So, I will continue to live life one day at a time, thank you very much.