CLL leukemia: Just diagnosed, what can be done?

Posted by kegraves @kegraves, Jun 6, 2022

Husband 84 just diagnosed with CLL,
Is this common in older people and what things are done to stop from progressing?? We are new to this site and this diagnosis..

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@teddytwo

Recently diagnosed with CLL and I’m suffering with a good deal of
“ pain in my neck”. I have applied warm compresses, take an ibuprofen, self massage, with no relief. It seems to be worse through the night. I sleep on an elevated platform already. I just was hoping somebody might have a suggestion to find some relief. Thank you

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Hi @teddytwo, welcome. This must be very uncomfortable. Does it prevent you from being able to sleep? Have you talked to your doctor about this already? Is sounds like it might need medical attention.

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@mabfp3

My husband has just been notified by his primary physician that he has CLL. This showed in his routine blood test for his annual physical exam. The both of us were in shock when he was told this news. His next step is to see an oncologist next Thursday. I have been looking through the information on this wonderful site, but feel overwhelmed with the amount that there is to learn about this disease. My husband and I would welcome any input from anyone going through this. Right now, we are pretty much in the dark about what to expect. Thanks so much for any insight that anyone can provide to us.

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Hi @mabfp3, I hope you don't mind but I merged your discussion with this existing discussion that @kegraves started just a few weeks earlier. Her husband, too, has recently diagnosed with chronic lymphacytic leukemia. You can start to read from the beginning of the discussion here:

- CLL leukemia: Just diagnosed, what can be done? https://connect.mayoclinic.org/discussion/cll-leukemia/

In addition to the great responses you got from @sandiegostu @loribmt and @annieg87, you'll now be introduced to more CLL-ers and caregivers like @teddytwo @kegraves @4romeosierra @hababeck @pieter1961 @carl50. So pull up a chair and join the widening circle.

I hope your appointment went well today.

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@colleenyoung

Hi @mabfp3, I hope you don't mind but I merged your discussion with this existing discussion that @kegraves started just a few weeks earlier. Her husband, too, has recently diagnosed with chronic lymphacytic leukemia. You can start to read from the beginning of the discussion here:

- CLL leukemia: Just diagnosed, what can be done? https://connect.mayoclinic.org/discussion/cll-leukemia/

In addition to the great responses you got from @sandiegostu @loribmt and @annieg87, you'll now be introduced to more CLL-ers and caregivers like @teddytwo @kegraves @4romeosierra @hababeck @pieter1961 @carl50. So pull up a chair and join the widening circle.

I hope your appointment went well today.

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Thank you very much for merging my discussion with @kegraves. I will definitely read all of the posts. Thank you, also, for your kindness in remembering my husband’s first appointment yesterday. The oncologists at Mass General Hospital were wonderful to us! We were told that he is currently at a stage zero, which was fantastic news to hear! They gave us a lot of hope! My husband will return in three months for another round of bloodwork and if the numbers stay where they are right now, they will extend additional appointments further out. This site has been so helpful to me! I will continue to stay on it, along with reading all that I can about CLL and supporting those people with positivity who post. Once again, thank you very much!

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@mabfp3

Thank you very much for merging my discussion with @kegraves. I will definitely read all of the posts. Thank you, also, for your kindness in remembering my husband’s first appointment yesterday. The oncologists at Mass General Hospital were wonderful to us! We were told that he is currently at a stage zero, which was fantastic news to hear! They gave us a lot of hope! My husband will return in three months for another round of bloodwork and if the numbers stay where they are right now, they will extend additional appointments further out. This site has been so helpful to me! I will continue to stay on it, along with reading all that I can about CLL and supporting those people with positivity who post. Once again, thank you very much!

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So glad your husband is doing well.. we were told that CLL common in older adults, my husband will be 85, only takes 1 pill for prostate and always been healthy.. He doesn’t feel bad, may get tired a little easier, but we are now stretching blood work or every 3 mos👏..

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@kegraves

So glad your husband is doing well.. we were told that CLL common in older adults, my husband will be 85, only takes 1 pill for prostate and always been healthy.. He doesn’t feel bad, may get tired a little easier, but we are now stretching blood work or every 3 mos👏..

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Thank you very much. Your husband sounds like he is doing well. So happy for both of you!

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Cll at age 64 ! what the expected range of WBC and LYM % ? I need advise and what the solution for CLL ?

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@sonia85

Cll at age 64 ! what the expected range of WBC and LYM % ? I need advise and what the solution for CLL ?

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Hi Sonia, welcome. I moved your question about blood values with CLL to this existing discussion
- CLL leukemia: Just diagnosed, what can be done? https://connect.mayoclinic.org/discussion/cll-leukemia/

I did this so you can read previous posts and easily connect with fellow CLL-ers like @kegraves @pieter1961 @carl50 @mabfp3 @sandiegostu @teddytwo @pike70 @eam32 @sofaramnotdead @minnesotajim @valeriewiegand and others.

According to the American Cancer Society's information https://www.cancer.org/cancer/chronic-lymphocytic-leukemia/detection-diagnosis-staging/how-diagnosed.html
"People with CLL have too many lymphocytes. (This may be called lymphocytosis.) Having more than 10,000 lymphocytes/mm³ (per cubic millimeter) of blood strongly suggests CLL, but other tests are needed to know for sure."

Naturally, the range of white blood cells and percentage of lymphocytes is different for everyone and monitored closed the decide on treatment or if your situation is active surveillance (also known as watch an wait).

Sonia, will you have treatments or are you currently on active surveillance? What are next steps for you?

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@colleenyoung

Hi Sonia, welcome. I moved your question about blood values with CLL to this existing discussion
- CLL leukemia: Just diagnosed, what can be done? https://connect.mayoclinic.org/discussion/cll-leukemia/

I did this so you can read previous posts and easily connect with fellow CLL-ers like @kegraves @pieter1961 @carl50 @mabfp3 @sandiegostu @teddytwo @pike70 @eam32 @sofaramnotdead @minnesotajim @valeriewiegand and others.

According to the American Cancer Society's information https://www.cancer.org/cancer/chronic-lymphocytic-leukemia/detection-diagnosis-staging/how-diagnosed.html
"People with CLL have too many lymphocytes. (This may be called lymphocytosis.) Having more than 10,000 lymphocytes/mm³ (per cubic millimeter) of blood strongly suggests CLL, but other tests are needed to know for sure."

Naturally, the range of white blood cells and percentage of lymphocytes is different for everyone and monitored closed the decide on treatment or if your situation is active surveillance (also known as watch an wait).

Sonia, will you have treatments or are you currently on active surveillance? What are next steps for you?

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Hello dear thanks for your reply , I have many question on this , how I can cotanct them?
The doctor said that we should do another blood test with detail so we are waiting for the result

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@sonia85

Cll at age 64 ! what the expected range of WBC and LYM % ? I need advise and what the solution for CLL ?

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Hi @sonia85, it looks like you must have received results of some bloodwork and there were numbers flagged high or low? Were you having any symptoms which prompted the labs or was this with a routine physical?

CLL is a slowly developing leukemia and can take years before treatment is even needed. It’s often managed quite well.

Have you spoken with a hematologist yet?

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@sonia85

Hello dear thanks for your reply , I have many question on this , how I can cotanct them?
The doctor said that we should do another blood test with detail so we are waiting for the result

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Simply post your questions in a reply here and the other members will respond, like @loribmt did.

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