symptoms of CLL

[RockymtnTexan]

I was diagnosed w CLL in Dec 2019. I’m on a watch and wait protocol with blood work every 6 months. My question is if I’m not on any meds yet, can I still have symptoms of occasional extreme fatigue, recurrent infections and sometimes feeling like I’m always fighting off something? Is this caused by CLL, or just a coincidence?

[Snakejaw]

Hey there, so I’m not sure where your lymphocytes are at these days, but if they get high enough, you generally see some symptoms (other key numbers tend to go down as a result of the surge).

I had around 200k and had some fatigue along with swollen nodes before treatment, Immune function can also be impaired.

I would talk to a cll specialist about how your feeling, and if starting treatment could improve your quality of life. Maybe it’s not time yet, but don’t suffer quietly.

[DRM18]

Hell yes, RockymtnTexan!

I nearly died (infection, blood clots, pneumonia) prior to treatment, largely in part due to the hit my immune system was taking from the CLL.

Once I started treatment, I got healthier!

--Dave!

[AussieNeil Administrator]

Most definitely, even if your lymphocyte count is perfectly normal as is the case with the Small Lymphocytic Lymphoma presentation of CLL/SLL. The CLL cells in your blood are in the dormant phase. It's the actively growing CLL cells in your nodes, spleen and bone marrow that interfere with your immune system and cause fatigue.

Particularly when your neutrophils are low, even more so when you have low immumoglobulins, you can indeed be constantly fighting off infections and regularly feel like you are coming down with the flu. That's how I started my journey with CLL/SLL. Actually the fatigue began well before my diagnosis. I remained in watch and wait for 11 years before treatment mostly improved my blood counts. Importantly, I was no longer neutropenic and my haemoglobin was better than at diagnosis.

Neil

[Guffy]

Hi there! I'm on W & W too, five years since diagnosis. I do feel that doing the normal stuff is harder, and my mobility and strength is not what it was. I was advised these may be because of the CLL. When I get a cold or a cough it takes longer to get over. But don't let it frighten you. It doesn't necessarily mean treatment is imminent. Strength and peace!

[CoachVera55]

Absolutely, the answer is Yes, I felt extreme fatigue 1yr prior to being diagnosed & those symptoms were the reason I was on my doctors. I knew something was wrong & I needed a name to focus my arsenal on. My enlarged Neck Lymph Node had to literally pop out & wave at my doctors before I got a diagnosis.

When I look back, my labs were out of wack at least 5yrs before my symptoms. I completely ignored stage 0 when my WBCs were spontaneously elevated, or even blaming heavy menstrual cycles for my anemia. I was on a life mission & would not slow down to even entertain the notion of being sick since I had college to complete, a marriage & then kids to raise.

But I also credit my beautiful state of denial on the 13yr 8mos of W&W lol. And I categorically disagree with treatment making you feel better, just take the best care of yourself now & maybe you’ll never need treatment. Bottomline, enjoy your W&W period as long as possible #GODSPEED🙏🏾

[RockymtnTexan]

thank you all for your replies. I so appreciate it! I’m just trying to understand and refuse to accept my declining health! I’m fighting it!

[Guffy in reply to RockymtnTexan]

That's the way! 👍

[Phil4-13]

Rockymtn Texan, in my mind, I don't say "refuse to accept my declining health"(though it is!), I say, " I can do this. I can manage this by accepting I simply do things differently now." I'm 74, in W&W 5 yrs and have not had any treatment. But, I do deal with annoying sinuses, some new aches and some hot flashes, very little fatigue. I manage all these with over the counter medicines, no prescriptions AND I do coffee AND chocolate AND tea! I've learned the importance in relaxing! You will do great because you are seeking knowledge and wisdom(this is the place!) to guide you on this "journey". I would be a "basket case" without this group of friends. 🙂 Sandra

[kitchengardener2]

I was diagnosed in 2018 but didn't start treatment until 2021. I was still getting frequent UTIs and foot fungal outbreaks which wouldn't clear. Once treatment started, I have only had a couple of UTIs.

[JLJC]

good morning. I am a female in the US and one year older than you when I was also diagnosed in 2019. I got pneumonia and that led to me finding out about my CLL. My symptoms slowly increased with time and I started Calquence Jan 2022. My symptoms crept up slowly and fatigue was one my biggest symptoms prior to starting medication. Most CLL symptoms start prior to medication, that is how it worked for me and now that I am on Calquence I have little to no symptoms. Good luck. I was scared to start medication but once I did I felt so much better. Try not to be scared. You have lots of support here so reach out anytime 🍀🌺

[Skyshark]

2016 I went to the doctor complaining about frequent short illnesses. Got blood, HIV test and some antibiotics. 2020 had persistent cough, went to doctor. Also mentioned again frequent illnesses like hay fever. Got a steroid nasal spray.