I am also fairly new to CLL. My primary found an elevated WBC. However, I was having repeated sinus infections following sinus surgery, so I felt certain the elevated WBC was due to the infections. He repeated the blood work and also found smudge cells, so he sent me to a hematologist. I, of course, thought the sinus infections caused the issues with my blood work; and I expected the hematologist to share my opinion - WRONG! When she said I had CLL, I was shocked! She also thought that the sinus infections were due to the CLL. I guess it is a matter of "the chicken or the egg". I am in active surveillance (watch and wait). I certainly hope I can maintain that status! Due to my compromised immune system, I receive monthly infusions of gamma globulin. Whether the infections caused the decreased immune system - or whether the CLL caused it - I am grateful to have my immune system getting a "boost". By the way, after sinus surgery, I have not had any more infections. I am glad to be able to share with others who have received the same diagnosis. I have no idea if I will ever need treatment - and I hope I will not - but it is good to know that others tolerate the treatment well.
I was diagnosed 2 years ago No symptoms. CLL picked up on routine bloodwork. Needless to say I was very shocked! I do bloodwork every 4 months. So far no treatments needed yet! 🙏
I was also diagnosed with CLL during a routine physical when my WBC was elevated, I was sent to an oncologist that confirmed with some more blood work. NO symptoms so I'm on a watch & wait. I go to an oncologist every 6 months for blood work and it doesn't change to much (thank goodness). I was 54 when I was diagnosed.
I was diagnosed about a month ago. I was reviewing the blood tests from a hospitalization for pancreatitis and the smear test caught my eye in all the daily numerous blood tests done when I was in the hospital. Nobody mentioned it! So I had a follow up Dr appointment and asked (I looked it up beforehand so I knew what it was) but I was told that it was possible for that to be an issue because of the recent pancreatitis so we waited a month did the test again and sure enough it’s CLL. My doctor said to me, you will die with this not because of this. I’ve had two appointments with a hematologist oncologist, not on any treatment yet my next appointment is in August. My white blood cell counts elevated between the two weeks the last time I had blood tests. I’m a little lost in all of this still processing and trying to understand what are the next steps.
My hematologist told me that it is slow growing. Chance of remission very good with pill for chemo and infusions - no hair loss. I have enlarged lymph nodes in abdomen and groin. No treatment now but bloodwork every 3 months. I am in Nova Scotia - your situation may be different. I pray you have good health and nice to hear from you.
I was diagnosed about a month ago. I was reviewing the blood tests from a hospitalization for pancreatitis and the smear test caught my eye in all the daily numerous blood tests done when I was in the hospital. Nobody mentioned it! So I had a follow up Dr appointment and asked (I looked it up beforehand so I knew what it was) but I was told that it was possible for that to be an issue because of the recent pancreatitis so we waited a month did the test again and sure enough it’s CLL. My doctor said to me, you will die with this not because of this. I’ve had two appointments with a hematologist oncologist, not on any treatment yet my next appointment is in August. My white blood cell counts elevated between the two weeks the last time I had blood tests. I’m a little lost in all of this still processing and trying to understand what are the next steps.
Welcome to Connect, @thacket3. If you’ve read through the posts in this discussion, you’ll see that you’re not alone with a CLL diagnosis out of the blue. Many blood cancers or conditions tend to develop slowly over time. So unless someone is experiencing symptoms the disease isn’t discovered until a routine blood test shows there’s a change.
As for next steps, your hematologist oncologist will monitor you closely for a while to look for trends in blood work. If things are stable then there’s not much that will change for you. CLL is one of the more treatable forms of leukemia and quite often requires just active surveillance. Over time, if there are indications that the disease may be progressing then your doctor will discuss treatment options. But for some people that can take years or maybe they never need treatment.
Besides this conversation where you joined the group, there are other discussions with CLL members. You might want to read through the comments in this discussion:
Anyone have chronic lymphocytic leukemia (CLL)? https://connect.mayoclinic.org/discussion/anyone-have-cll/
You also mentioned having pancreatitis. If you’re interested in talking with others with that shared experience, here is a list of search results of pancreatitis discussions: https://connect.mayoclinic.org/search/?search=Pancreatitis+
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This site is very informative. Thanks to all
I am also fairly new to CLL. My primary found an elevated WBC. However, I was having repeated sinus infections following sinus surgery, so I felt certain the elevated WBC was due to the infections. He repeated the blood work and also found smudge cells, so he sent me to a hematologist. I, of course, thought the sinus infections caused the issues with my blood work; and I expected the hematologist to share my opinion - WRONG! When she said I had CLL, I was shocked! She also thought that the sinus infections were due to the CLL. I guess it is a matter of "the chicken or the egg". I am in active surveillance (watch and wait). I certainly hope I can maintain that status! Due to my compromised immune system, I receive monthly infusions of gamma globulin. Whether the infections caused the decreased immune system - or whether the CLL caused it - I am grateful to have my immune system getting a "boost". By the way, after sinus surgery, I have not had any more infections. I am glad to be able to share with others who have received the same diagnosis. I have no idea if I will ever need treatment - and I hope I will not - but it is good to know that others tolerate the treatment well.
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4 ReactionsNine years level 0 and no medication. I do blood work semi annually and my numbers are generally consistent.
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6 ReactionsI was diagnosed 2 years ago No symptoms. CLL picked up on routine bloodwork. Needless to say I was very shocked! I do bloodwork every 4 months. So far no treatments needed yet! 🙏
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4 ReactionsI was also diagnosed with CLL during a routine physical when my WBC was elevated, I was sent to an oncologist that confirmed with some more blood work. NO symptoms so I'm on a watch & wait. I go to an oncologist every 6 months for blood work and it doesn't change to much (thank goodness). I was 54 when I was diagnosed.
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2 ReactionsThanks to everyone for the encouraging remarks.
I was diagnosed about a month ago. I was reviewing the blood tests from a hospitalization for pancreatitis and the smear test caught my eye in all the daily numerous blood tests done when I was in the hospital. Nobody mentioned it! So I had a follow up Dr appointment and asked (I looked it up beforehand so I knew what it was) but I was told that it was possible for that to be an issue because of the recent pancreatitis so we waited a month did the test again and sure enough it’s CLL. My doctor said to me, you will die with this not because of this. I’ve had two appointments with a hematologist oncologist, not on any treatment yet my next appointment is in August. My white blood cell counts elevated between the two weeks the last time I had blood tests. I’m a little lost in all of this still processing and trying to understand what are the next steps.
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Helpful -
Hug
2 ReactionsMy hematologist told me that it is slow growing. Chance of remission very good with pill for chemo and infusions - no hair loss. I have enlarged lymph nodes in abdomen and groin. No treatment now but bloodwork every 3 months. I am in Nova Scotia - your situation may be different. I pray you have good health and nice to hear from you.
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Hug
4 ReactionsHas anyone been told their spleen is enlarged with a tear leaking blood due to CLL?
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1 ReactionWelcome to Connect, @thacket3. If you’ve read through the posts in this discussion, you’ll see that you’re not alone with a CLL diagnosis out of the blue. Many blood cancers or conditions tend to develop slowly over time. So unless someone is experiencing symptoms the disease isn’t discovered until a routine blood test shows there’s a change.
As for next steps, your hematologist oncologist will monitor you closely for a while to look for trends in blood work. If things are stable then there’s not much that will change for you. CLL is one of the more treatable forms of leukemia and quite often requires just active surveillance. Over time, if there are indications that the disease may be progressing then your doctor will discuss treatment options. But for some people that can take years or maybe they never need treatment.
Besides this conversation where you joined the group, there are other discussions with CLL members. You might want to read through the comments in this discussion:
Anyone have chronic lymphocytic leukemia (CLL)?
https://connect.mayoclinic.org/discussion/anyone-have-cll/
You also mentioned having pancreatitis. If you’re interested in talking with others with that shared experience, here is a list of search results of pancreatitis discussions: https://connect.mayoclinic.org/search/?search=Pancreatitis+
Has your pancreatitis been resolved?
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2 Reactions