1. < Blood Cancers & Disorders

Chronic Lymphocytic Leukemia: Anyone else in remission?

Posted by surreal name @sofaramnotdead, Aug 31, 2017

I have CLL. I had 5 chemo treatments which ended 13 months-ago, and so far, I'm still in remission. Has anyone else here been in remission from
CLL? Thanks.

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pokeyspride2002 | @pokeyspride2002 | May 1, 2018

Bless you and giant hugs for your immune system and RBC's, I bet they are both doing a happy dance out of this world!!!! I am for you!!

REPLY
Cindy | @ssid | Jul 26, 2018
In reply to @ssid "Hello As of January 29 my hemoglobin and platelets are below the normal low, I went..." + (show)
@ssid

Hello
As of January 29 my hemoglobin and platelets are below the normal low, I went for a second opinion with a CLL specialist at Froedtert in Milwaukee. If my numbers continue to lower he said I will need to start treatment....FCR for 6 months or Ibrutinib 3x a day forever. Does anyone have any thoughts, pros or cons of the two treatments?

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Well, I started taking Imbruvica, 420 mg, on July 6th, 2018. Only two days where I felt nauseous with a headache. My wbc # peaked at 100,000 and 78,000 as of last week. My hemoglobin and platelets are also low which they are monitoring this week....blood draw in two hours. Hopefully the numbers will come up on their own. If not I will take a lower dose or stop for awhile...
The anxiety I have with all of this is crazy at times.

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Moderator
Justin McClanahan, Moderator | @JustinMcClanahan | Jul 27, 2018
In reply to @ssid "Hello As of January 29 my hemoglobin and platelets are below the normal low, I went..." + (show)
@ssid

Hello
As of January 29 my hemoglobin and platelets are below the normal low, I went for a second opinion with a CLL specialist at Froedtert in Milwaukee. If my numbers continue to lower he said I will need to start treatment....FCR for 6 months or Ibrutinib 3x a day forever. Does anyone have any thoughts, pros or cons of the two treatments?

Jump to this post

@ssid, thank you for updating us. You had mentioned that you were previously on wait and watch protocol, but your numbers must have changed. I think anxiety with these treatments and diagnosis is understandable. How did your blood draw go?

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adriano | @adriano | Jul 27, 2018

I supposem but I do not know about cases. But it is very good good to read that the CLL in your case is in remission!

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marcie555 | @marcie555 | Jul 29, 2018

I have been diagnosed with CLL and neutropenia. Went to Mayo atwo weeks ago for their opinion on tratments of each. Still waiting for all analyses to be completed. Mayo did some tests and are now relooking at bone marrow tests done at U of M. So far doctors at both institutions have said I have early stage CLL. But I am not sure what kind of curve ball neutropenia throws into the mix.

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katerose | @katerose | Jul 30, 2018
In reply to @adriano "I have CLL and thus far just in "wait and watch", but your information is very..." + (show)
@adriano

I have CLL and thus far just in "wait and watch", but your information is very interesting. Thank you !

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I’m newly diagnosed March 2018 and in wait and watch as well. It’s helpful to hear the status of others and receive more education and suggestions. Thank you

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katerose | @katerose | Aug 3, 2018
In reply to @adriano "I have CLL and thus far just in "wait and watch", but your information is very..." + (show)
@adriano

I have CLL and thus far just in "wait and watch", but your information is very interesting. Thank you !

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Dear Adriano, I'm newly diagnosed with CLL in March. How have you been managing the fatigue so far? Hope this is a good day for you. katerose

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Moderator
Justin McClanahan, Moderator | @JustinMcClanahan | Aug 6, 2018
In reply to @adriano "I have CLL and thus far just in "wait and watch", but your information is very..." + (show)
@adriano

I have CLL and thus far just in "wait and watch", but your information is very interesting. Thank you !

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Hello @katerose, thank you for sharing your diagnosis of CLL. Although the following conversation is about Lymphoma, I thought the topic might be relevant to you because it is about being in the Wait & Watch protocol. You may find it worth your time to check out the discussion and learn how other members are handling a blood cancer while in the wait and watch approach, https://connect.mayoclinic.org/discussion/non-hodgkins-lymphoma-watch-wait-approach/.

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katerose | @katerose | Aug 7, 2018
In reply to @adriano "I have CLL and thus far just in "wait and watch", but your information is very..." + (show)
@adriano

I have CLL and thus far just in "wait and watch", but your information is very interesting. Thank you !

Jump to this post

Thank you Justin. The information you provided gives me a wider perspective and glimmer of how the challenges are being met.

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