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Concerned: CLL in remission, but feel lousy, what to do?

Posted by layala @layala, Jan 22, 2023

I was diagnosed with CLL in 2017, i’m on Imbruica. I was at my doctor inDecember.
My Dr. Told me i was in the beginning stages of remission. I asked him then why do i feel so lousy and why do my bones hurt. He didn’t have an answer for me. Not sure what else I should do

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Colleen Young, Connect Director | @colleenyoung | Jan 25, 2023

Hi @layala, welcome. That does sound confounding to hear that you are in the early stages of remission, but no answers as to why you might be feeling lousy. I'm tagging fellow CLL-ers like @kegraves @pieter1961 @carl50 @rlybolt @mabfp3 @sandiegostu @annieg87 @teddytwo @raye @shirlpat @alliefair @dimcdee @carl50 @wmisyr @minnesotajim to join this discussion.

Layala, could it "simply" be the side effects of Imbruvica that are making you feel lousy? Common Imbruvica side effects include muscle and bone pain as well as general tiredness. How long will you continue to take Imbruvica?

REPLY
2 replies
sandiegostu | @sandiegostu | Jan 25, 2023

Hello - You might have me mixed up with someone else. I'm in stage zero of Leukemia, class B. I take no medication - so far. I do feel tired often but I think that's a normal reaction to a lack of red blood cells.
Just a footnote- the Veterans Administration has determined the cause of my Class B Leukemia to be exposure to Agent Orange while in combat in Viet Nam. Guess it took 50 years to appear ??
Stu Strebig, San Diego, CA

REPLY
layala | @layala | Jan 25, 2023
In reply to @colleenyoung "Hi @layala, welcome. That does sound confounding to hear that you are in the early stages..." + (show)
@colleenyoung

Hi @layala, welcome. That does sound confounding to hear that you are in the early stages of remission, but no answers as to why you might be feeling lousy. I'm tagging fellow CLL-ers like @kegraves @pieter1961 @carl50 @rlybolt @mabfp3 @sandiegostu @annieg87 @teddytwo @raye @shirlpat @alliefair @dimcdee @carl50 @wmisyr @minnesotajim to join this discussion.

Layala, could it "simply" be the side effects of Imbruvica that are making you feel lousy? Common Imbruvica side effects include muscle and bone pain as well as general tiredness. How long will you continue to take Imbruvica?

Jump to this post

They have cut back on my imbruica. But i’m still fatigued and my body hurts

REPLY
shirlpat | @shirlpat | Jan 25, 2023
In reply to @colleenyoung "Hi @layala, welcome. That does sound confounding to hear that you are in the early stages..." + (show)
@colleenyoung

Hi @layala, welcome. That does sound confounding to hear that you are in the early stages of remission, but no answers as to why you might be feeling lousy. I'm tagging fellow CLL-ers like @kegraves @pieter1961 @carl50 @rlybolt @mabfp3 @sandiegostu @annieg87 @teddytwo @raye @shirlpat @alliefair @dimcdee @carl50 @wmisyr @minnesotajim to join this discussion.

Layala, could it "simply" be the side effects of Imbruvica that are making you feel lousy? Common Imbruvica side effects include muscle and bone pain as well as general tiredness. How long will you continue to take Imbruvica?

Jump to this post

I do not have Leukemia. I m have B Mantle Cell Lymphoma.

REPLY
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