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.
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 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 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.
Stage O active surveillance and my hematologist was very encouraging saying many people have it for years and treatment is by pills and no hair loss. Enjoy the sunshine everyone
Welcome to Connect, @sweetsuzy. Whether you’re just at the beginning of your diagnosis as a newbie or a veteran of CLL, this is a great place to join the discussion. If you’re looking for newly diagnosed members, @ksandusky86 and @mygirl recently joined the group.
Here is a message I wrote to @ksandusky86 which might be a good introduction for you. https://connect.mayoclinic.org/comment/1294093/
What have you and your doctor discussed about your CLL? Are you in active surveillance or will you be requiring treatment?
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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.
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4 ReactionsI 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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2 ReactionsThanks to everyone for the encouraging remarks.
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.
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2 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 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 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 ReactionsThis site is very informative. Thanks to all
Stage O active surveillance and my hematologist was very encouraging saying many people have it for years and treatment is by pills and no hair loss. Enjoy the sunshine everyone
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6 ReactionsWelcome to Connect, @sweetsuzy. Whether you’re just at the beginning of your diagnosis as a newbie or a veteran of CLL, this is a great place to join the discussion. If you’re looking for newly diagnosed members, @ksandusky86 and @mygirl recently joined the group.
Here is a message I wrote to @ksandusky86 which might be a good introduction for you. https://connect.mayoclinic.org/comment/1294093/
What have you and your doctor discussed about your CLL? Are you in active surveillance or will you be requiring treatment?
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Like -
Helpful -
Hug
3 Reactions