Relapse of CLL

[Jvander11]

Has anyone who had relapsed CLL had strong CLL symptoms prior to that diagnosis? I have blood work in a few weeks but my CLL symptoms have been very prevalent for a month now, and was curious if those were signs of having the CLL diagnosis again?

[rafew]

Yes, unfortunately symptoms indicated that my remission(s) had ended and was needing additional treatments. It’s not always the case, depending on how CLL has effected you in the past. You may want to give your doctor a heads-up on what is happening before you go for your blood work. Best wishes

[Jvander11 in reply to rafew]

Thank you very much!

[SofiaDeo]

Yes.

[Jvander11 in reply to SofiaDeo]

Thank you!

[HopeME]

Hi Jvander

My understanding is CLL relapse can come in many forms. So what you are experiencing may in fact be a relapse? Exactly what are your symptoms?

I’m four years in remission but my hemoglobin and neutrophils are starting to decline. My lymph nodes aren’t easily palpable but the physician has been able to feel them. My disease seems to be starting to advance slowly. What was your first line of treatment, how many years in remission are you?

Stay focused on the positives.

Best,

Mark

[Jvander11 in reply to HopeME]

My symptoms have been very tired, bad pain in my spleen area and have lost some weight fast, similar symptoms from before I went through chemo the first time. I just finished only 2 months ago so being this quick with symptoms again has me questioning the relapse.

[SofiaDeo in reply to Jvander11]

I have had treatment work, then fail shortly afterwards. It's awful to have to consider treatment again so soon, but it can happen. Sometimes remission can be long, but not always.

[thompsonellen]

I wear a fitness tracker and a decline in VO2 max and a rise is resting heart rate proceeded my relapse as well as my need to be on a higher dose of my trial drug. I've mentioned this to Dr. Byrd's team several times because I think someone should study this. I also present as CLL/SLL, so my nodes swell, too.

[W00dfin]

My deteriorating lab counts were the determining factors in the hematologist recommending treatment after a 5 year remission. I was feeling all right.

[Doggoneit101]

Yes, I relapsed 6 months after finishing my 2nd treatment. I'm have CLL/SLL so my symptoms may be different than yours. I had night sweats, elevated WBC, low grade fevers, frequent infections requiring multiple antibiotics to clear up, and swollen nodes and spleen. Good news is I did very well on Venteclax (3rd treatment). Been in a partial remission since December 2021. Hope this helps.

[craterlake in reply to Doggoneit101]

Glad to hear you are doing so well now .. which 2 treatments did you have prier to the venetoclax .

[Doggoneit101 in reply to craterlake]

Thanks, I did Rituxin and Ibrutinib.

[craterlake in reply to Doggoneit101]

thanks

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