Hi, I’m Kandy. In April 2016 I was diagnosed with CLL, but since then it hasn’t progressed. Now with a blood test taken about two weeks ago, I’m informed that the lymphocyte level is elevated. I’m waiting to hear further. Has anyone else experienced this kind of thing?
@kandyburke. Hi Kandy, welcome to Mayo Connect. CLL is often very slow to progress as in your case where it’s remained stable for almost 10 years. Having an elevated lymphocyte level with your latest blood test doesn’t necessarily mean there’s a change in your CLL. They can rise after an illness or an infection as an immune response.
Did your doctor run a CBC with differential which breaks down the different types of white blood cells? Do you have a consultation scheduled to talk over the results with your doctor?
@kandyburke. Hi Kandy, welcome to Mayo Connect. CLL is often very slow to progress as in your case where it’s remained stable for almost 10 years. Having an elevated lymphocyte level with your latest blood test doesn’t necessarily mean there’s a change in your CLL. They can rise after an illness or an infection as an immune response.
Did your doctor run a CBC with differential which breaks down the different types of white blood cells? Do you have a consultation scheduled to talk over the results with your doctor?
@loribmt Thank you for your message. This is new to me, and hearing from you is comforting. I had this blood test done by my NP as my oncologist requested a yearly test. Now the NP’s office let me know of this result. I don’t what kind of blood test I had. I’m hoping my oncologist will contact me, or maybe I should contact him? I live in a small town, and he’s located 60 miles from me. I’m 81 years old.
Yes, I had a similar situation. My bloodwork started looking a little weird in 2011. Every year during my physical, it was noticed and discussed, but it seemed to be just a wait and see. In 2023, I was diagnosed with prostate cancer and CLL. Both were in early stages, so I guess that was good. My CLL doctor at Mayo, said that my CLL “could” have been a contributing factor for the PC. No one seems to be sure if it was causal, or just a coincidence. Long story short, I did radiation for the PC and begin my therapy for the CLL 2 weeks ago. All has been good so far. In my case, it was slow growing/developing, not sure if that is always the situation.
@loribmt Thank you for your message. This is new to me, and hearing from you is comforting. I had this blood test done by my NP as my oncologist requested a yearly test. Now the NP’s office let me know of this result. I don’t what kind of blood test I had. I’m hoping my oncologist will contact me, or maybe I should contact him? I live in a small town, and he’s located 60 miles from me. I’m 81 years old.
@kandyburke. Given the same situation, if this were me, I’d call the oncologist office to see if they’ve gotten the recent lab results. That it was noted by your NP there was a change, an elevation in the lymphocytes and you’re wondering if this is concerning. It may turn out it’s not a significant change, but it’s not fair to be left wondering…you’d like clarification.
Have you had any changes symptoms or your health over the past year? Do you know if the lab results from your NP’s office are forwarded to your oncologist for review?
Welcome to Connect, | @whatshallido59 |
Your original post in another group mentioned: “I have been diagnosed with cronic lukemia is there any one that has the same.” I thought I’d bring you right over to this CLL (Chronic lymphocytic leukemia) support group so that you could meet up with some of the members who also have CLL.
If you wouldn’t mind sharing a little more about yourself, when were you diagnosed with the Chronic lymphocytic leukemia? What has your hematologist told you about your disease? CLL tends to be a very slowly developing form of leukemia and often patients can go years without any treatment. Are you in a watch and wait period or are you expected to start some treatments?
@whatshallido59 With your recent diagnosis of CLL, you must have a lot of questions. As I mentioned earlier, we have several members in Connect who also have Chronic lymphocytic leukemia. There are many discussions in the group with a great deal of information linked in the conversations.
In this current discussion, where your comment is posted, if you reverse the order of the replies (you can do that easily by clicking the Oldest to Newest button under the opening paragraph) you’ll be back at the beginning of the comments for this discussion. There are several with great links to information about CLL.
Each person’s unique in their CLL journey and it’s important to have a hematologist/oncologist who specializes in blood disorders working with you.
Since your diagnosis was while you were in Germany, now that you’re back home, have you contacted a local hematologist/oncologist?
Welcome to Connect, | @whatshallido59 |
Your original post in another group mentioned: “I have been diagnosed with cronic lukemia is there any one that has the same.” I thought I’d bring you right over to this CLL (Chronic lymphocytic leukemia) support group so that you could meet up with some of the members who also have CLL.
If you wouldn’t mind sharing a little more about yourself, when were you diagnosed with the Chronic lymphocytic leukemia? What has your hematologist told you about your disease? CLL tends to be a very slowly developing form of leukemia and often patients can go years without any treatment. Are you in a watch and wait period or are you expected to start some treatments?
@loribmt
My blood pressure was very low so my daughter took me to the doctor and after blood test they suggested that I go to the hospital. My white blood cell count was 97000 they called a hemotogist and he told me that I have CLL, my hemotologist at home told me nothing and I saw him two weeks before we went to Germany and my white blood cell count was 87000.
@loribmt
My blood pressure was very low so my daughter took me to the doctor and after blood test they suggested that I go to the hospital. My white blood cell count was 97000 they called a hemotogist and he told me that I have CLL, my hemotologist at home told me nothing and I saw him two weeks before we went to Germany and my white blood cell count was 87000.
@whatshallido59 Quite frankly, I really think you should be contacting a doctor soon to get some confirming tests to see what might be causing your elevated white blood counts and verify if you have CLL as noted by the doctor in the ER. It’s up to you whether you see your current doctor or seek a 2nd opinion elsewhere. But it’s important to have this checked out.
You mentioned you already have have a hematologist, is this someone you see for another blood condition?
All I can say is follow your Doctor’s advice. If one isn’t comfortable with the advice then find another doctor or hospital for a second opinion. I am very happy with my doctor. After being diagnosed with CLL it was dormant (for lack of a better word) for 2/3 years then I had a flare up. After treatment and blood tests it is now not an issue. But that doesn’t mean it won’t become an issue in the future. Having a doctor you know/like/believe in is a good start. I’m not recommending any doctor or hospital but one has to find a doctor they can believe/trust. I have that so I just trust her. So, I just keep a positive attitude hope for the best. Having CLL is not a good condition to have but having a positive attitude is a good thing to have and each person who has CLL can control their attitude. BE POSITIVE.
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@kandyburke. Hi Kandy, welcome to Mayo Connect. CLL is often very slow to progress as in your case where it’s remained stable for almost 10 years. Having an elevated lymphocyte level with your latest blood test doesn’t necessarily mean there’s a change in your CLL. They can rise after an illness or an infection as an immune response.
Did your doctor run a CBC with differential which breaks down the different types of white blood cells? Do you have a consultation scheduled to talk over the results with your doctor?
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3 Reactions@loribmt Thank you for your message. This is new to me, and hearing from you is comforting. I had this blood test done by my NP as my oncologist requested a yearly test. Now the NP’s office let me know of this result. I don’t what kind of blood test I had. I’m hoping my oncologist will contact me, or maybe I should contact him? I live in a small town, and he’s located 60 miles from me. I’m 81 years old.
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Helpful -
Hug
2 ReactionsHello Kandy,
Yes, I had a similar situation. My bloodwork started looking a little weird in 2011. Every year during my physical, it was noticed and discussed, but it seemed to be just a wait and see. In 2023, I was diagnosed with prostate cancer and CLL. Both were in early stages, so I guess that was good. My CLL doctor at Mayo, said that my CLL “could” have been a contributing factor for the PC. No one seems to be sure if it was causal, or just a coincidence. Long story short, I did radiation for the PC and begin my therapy for the CLL 2 weeks ago. All has been good so far. In my case, it was slow growing/developing, not sure if that is always the situation.
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Like -
Helpful -
Hug
1 Reaction@kandyburke. Given the same situation, if this were me, I’d call the oncologist office to see if they’ve gotten the recent lab results. That it was noted by your NP there was a change, an elevation in the lymphocytes and you’re wondering if this is concerning. It may turn out it’s not a significant change, but it’s not fair to be left wondering…you’d like clarification.
Have you had any changes symptoms or your health over the past year? Do you know if the lab results from your NP’s office are forwarded to your oncologist for review?
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Helpful -
Hug
2 ReactionsThanks for your response. I will follow your suggestions. Very comforting.
@loribmt my doctor here didn't say anything to me , I found out that I have CLL when I was in Germany.
@whatshallido59 With your recent diagnosis of CLL, you must have a lot of questions. As I mentioned earlier, we have several members in Connect who also have Chronic lymphocytic leukemia. There are many discussions in the group with a great deal of information linked in the conversations.
In this current discussion, where your comment is posted, if you reverse the order of the replies (you can do that easily by clicking the Oldest to Newest button under the opening paragraph) you’ll be back at the beginning of the comments for this discussion. There are several with great links to information about CLL.
Each person’s unique in their CLL journey and it’s important to have a hematologist/oncologist who specializes in blood disorders working with you.
Since your diagnosis was while you were in Germany, now that you’re back home, have you contacted a local hematologist/oncologist?
@loribmt
My blood pressure was very low so my daughter took me to the doctor and after blood test they suggested that I go to the hospital. My white blood cell count was 97000 they called a hemotogist and he told me that I have CLL, my hemotologist at home told me nothing and I saw him two weeks before we went to Germany and my white blood cell count was 87000.
@whatshallido59 Quite frankly, I really think you should be contacting a doctor soon to get some confirming tests to see what might be causing your elevated white blood counts and verify if you have CLL as noted by the doctor in the ER. It’s up to you whether you see your current doctor or seek a 2nd opinion elsewhere. But it’s important to have this checked out.
You mentioned you already have have a hematologist, is this someone you see for another blood condition?
All I can say is follow your Doctor’s advice. If one isn’t comfortable with the advice then find another doctor or hospital for a second opinion. I am very happy with my doctor. After being diagnosed with CLL it was dormant (for lack of a better word) for 2/3 years then I had a flare up. After treatment and blood tests it is now not an issue. But that doesn’t mean it won’t become an issue in the future. Having a doctor you know/like/believe in is a good start. I’m not recommending any doctor or hospital but one has to find a doctor they can believe/trust. I have that so I just trust her. So, I just keep a positive attitude hope for the best. Having CLL is not a good condition to have but having a positive attitude is a good thing to have and each person who has CLL can control their attitude. BE POSITIVE.
-
Like -
Helpful -
Hug
2 Reactions