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?
When my oncologist diagnosed me I was 29 and he said "you will have this your whole life and it will kill you". I wish I had some of yall's doctors that were more encouraging. It's been a difficult 10 years dragging those words around with me into everything I try to do.
My Dad was diagnosed in his 70's with CLL and has been taking Imbruvica 140mg every other day since. His oncologist is happy with Dad's numbers and stability since. Dad is turning 99 years old in June! There's always hope. Don't give up.
I recently saw my oncologist for my once a year checkup. After eight years I'm still stable with a WBC of about 40 and on no medication. My oncologist said that with about 50 patients with CLL only three are taking meds and I will most likely never need to. So just look at this as a bump in the road and continue with your life with this diagnosis tucked in the back of your head.
I have my first second opinion @Mayo Tuesday.
I had lots of questions After my 1st diagnosis I was not satisfied with my Doctor's Answers to some of my questions. So I requested 1⁄2 opinion and was pleased to hear from mayo. There are lots of treatments from what I understand and improvements and hopeI am anxiously . I am anxiously awaiting my appointment.
Hello @susue and welcome to Mayo Connect! I'm glad to hear that you will be getting a second opinion at Mayo Clinic. On Connect there are some discussions that might be helpful to you,
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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! 🙏
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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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3 ReactionsI am newly diagnosed with CLL anyone else new to it also?
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1 ReactionMy Dad was diagnosed in his 70's with CLL and has been taking Imbruvica 140mg every other day since. His oncologist is happy with Dad's numbers and stability since. Dad is turning 99 years old in June! There's always hope. Don't give up.
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11 ReactionsI recently saw my oncologist for my once a year checkup. After eight years I'm still stable with a WBC of about 40 and on no medication. My oncologist said that with about 50 patients with CLL only three are taking meds and I will most likely never need to. So just look at this as a bump in the road and continue with your life with this diagnosis tucked in the back of your head.
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11 ReactionsHello @susue and welcome to Mayo Connect! I'm glad to hear that you will be getting a second opinion at Mayo Clinic. On Connect there are some discussions that might be helpful to you,
--Keys to a Successful Doctor's Appointment
https://connect.mayoclinic.org/discussion/keys-to-a-successful-doctors-appointment/
and
--Tips for Seeking a Second Opinion
https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/tips-for-seeking-a-second-opinion/
Will you be traveling very far to reach the Mayo facility for your appointment?
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