Increased fatigue levels / Breathlessness and Petechiae

[The_simple_life]

Hello again...

I have another appt today with the doc as I have been feeling really grotty lately. Since my last appt I have developed Petechiae on my stomach, increased levels of fatigue and breathlessness. I'm still working a 45 hr week currently but it feels like I'm dragging myself through the week from Wednesday onwards... 😢

I was diagnosed in Dec 2022 as having CLL (Stage A and W&W) but since that diagnosis I have noticed the symptoms mentioned above and I have also been off work twice (once in Feb and once in early March) due to flu symptoms. I'm just concerned that the symptoms have happened all within 3 months and my WBC has increased from 29.2 in Dec to 36.0 now.

I know I'm probably overthinking this but can't help thinking that I am further along this journey than when I was diagnosed? I appreciate my BC (below) only show elevation on my ALT, Total WBC, Lymphocyte and Cholesterol below, as far As I can see?

I have a telephone appt today but hate them as I find it so hard to articulate how I feel in relation to these. I certainly think my ALT level is cause for concern ? And whilst my Total WBC is lower than the group in some instances, it's risen since Dec ? Am I overthinking or is there anything you'd press for given these results and you knowledge of CLL?

My recent bloods that were shared with me as are as follows:

Total WBC - 36.0 10*9/L

RBC - 4.2 10*12/L

Serum ALT - 52 u/l

Neutrophil - 4.2 10*9/L

Basophil - 0.16 10*9/L

Eosinophil - 0.2 10*9/L

Monocyte - 0.4 10*9/L

Lymphocyte - 28.0 10*9/L

MCV - 95.0 f/L

MCH -32.3 pg

MCHC - 339 g/L

Cholesterol 5.20 mmol/L

Thank you all again

Gareth (UK)

[MisfitK]

Did you ever get tested for Covid or the flu? Breathlessness was a symptom I got from my 1st bout with Covid (pre-vaccine) and I felt awful for 2-3 months afterward for energy.

Right now, I agree - I don't see anything "in the numbers" that would explain the ongoing fatigue except that a 45 hour work schedule in the midst of a flu/Covid recovery is tough for a normal person, let alone one with CLL. We just usually feel worse and take longer to get better from regular illness, and if you don't take enough time to get better, the illness might linger and just make you feel continually bad.

[The_simple_life in reply to MisfitK]

Thanks MisfitK. I've been tested for CV19 just last week and it was -ve. Thought that might have been the issue too given I was displaying symptoms but nope. I've since spoken to the doc and she's requested to see me in person on Monday. Hopefully that with the Haematologist appt in April and I should get to the bottom of this. I certainly feel terrible at the moment. Hope you're ok and keeping as well as possible.

[MisfitK in reply to The_simple_life]

I'm doing well. My recent appointment went really well this week.

For the illness, don't discount that you could have had Covid/flu in Feb and you got a follow on bacterial infection a few weeks later. That happened in my 2nd bout of Covid last summer, and funny enough, I felt worse with that infection (til I got a 10 day antibiotic) than I had with the Covid bout.

[Donnamccll in reply to MisfitK]

I agree. My numbers are quite similar, W &W. And I still work full time. Naps and rest have become a high priority for me. I get all the vaccines but I still take longer to recover from the variety of bugs that travel through my workplace.

[esn1967]

Hello, there- we are CLL cousins as I was just diagnosed in November 2022.

I am wondering if your recent WBC and lymphocytes increase is due to having a viral or bacterial infection?

I was similarly freaked out as my WBC had risen from 16,000 to 23,000 in my blood draw on 1/31/2023. My lymphocyte numbers had also increased somewhat dramatically! Lymphocyte abs went from 8.5 to 15.3!

However, on 1/31, I had a sinus infection and was on antibiotics.

My blood was re-drawn on 3/09/2023 and my numbers were back down:

WBC- back to 16,000

Lymphocyte Abs- 7.74.

On 3/09, I saw a CLL specialist at Dana Farber who said that its normal for these numbers to go up when I have an infection.

Regarding Fatigue: My fatigue was really intense for about four weeks while I fully recovered from the sinus infection. The fatigue has since lessened. It's there, but I can work around it.

Sincerely,

Emily

[The_simple_life]

Thanks for the comment esn1967. Hope you're feeling better (🤷‍♂️) now? I really don't know, I'm going to see the doctor in the practice on Monday so I can speak to her properly about everything. I guess anything is possible when we are immunosuppressed? It will be interesting to see what the blood draws are in a few more months. I'll certainly let you know. Hope you have a great weekend. Gareth

[Pacificview]

Gareth

I do not view you as over thinking it. Your WBC/ALC are higher than mine. I start treatment next week due to symptoms! I would not want my symptoms to get worse!

Your symptoms are more than likely due to your CLL. Conveying all of this to your specialist is the prudent way to go. You have to be your best advocate. If your not feeling right, saying so and doing something about it is prudent.

Let us know how it goes, all the Lords best to you!

John

[The_simple_life in reply to Pacificview]

Thanks John. Appreciate your message. I wish you well on your treatment... Likewise, please let us know how you get on with it.

I'm going to press for it ASAP as like you say, I know how I'm feeling and I know it's not right.

Take care John.

Gareth

[AnneHill]

I imagine your doctor will do blood tests. Its worth checking B12 levels. When I was first diagnosed there was a minute change in my blood. I had been very tired and had headaches. I changed my job to one with less hours and less stress. It made a huge difference. You are working a lot of hours and its no wonder you are tired. It leaves you less hours to do other things and I imagine its hard to have quality time to relax or do pleasurable things.

Cll is possibly the cause of the fatigue and we think treatment is the answer but it isnt if you dont need it.

I have loads of ailments and take meds that make me tired. My cll is in remission but after all these years I accept that I have fatigue.

My advice is to look at your lifestyle. Do you need to work all those hours and could you cut them? I always wanted any work and money going. I could have afforded to work less. I have back problems and should have got a cleaner.

I have days when I doze and am a waste of space. If its the cll we can only make life easier.

I hope things improve, Anne uk

[Pearlpink]

Hi. You are not overreacting. Purpura and breathlessness important to investigate particularly. We can’t be much help as it’s not clear when you had the blood tests, and they don’t include Hb (tells us about anaemia), or platelets (important re the purpura).

You haven’t said, but the review needs to be with a consultant specialist in CLL. Despite your white cells not being that high, there can be progression in other ways. The spleen can be enlarging without increases in white count.

Some rare things can happen with CLL which just happen out of the blue, but can easily be treated, but need to be picked up. Two are autoimmune haemolytic anaemia (sudden anaemia)and idiopathic thrombocytopenia (platelets drop).

I wouldn’t worry as most things are easily treated, but make sure you get blood tests asap, and that your dr is cll specialist. It might be your Gp you are speaking today but mention some of the above to whoever you speak to, and definitely say to them about the purpura, shortness of breath, and fatigue, like you have to us. You do need to see your specialist or talk to them.

My memory is not as good so I have had a few very unsatisfactory consultations where I can’t remember what I wanted to ask or tell them. It’s helpful to write it down in bullet points so you can tell them.

good luck!

[CRC4747]

Somewhat similar for me and have to say not sure if this is the new norm or something else. 67 years of age and diagnosed back in September of 2022. Short of breath was my first symptom that lead to diagnosis. Keeps returning along with periods of fatigue. I am in W&W and happy to be there. Had all the COVID shots and had COVID so wonder it it might be long COVID, Very similar. Also imagine a mild flu or cold just might be more noticeable now. And of course my age. I live in a very remote part of BC, Canada so access to a doctor bit of a stretch and feels a bit like crying wolf when your mind perks up at each symptom. Still live a very active lifestyle but I have to say there has been a noticeable change.

I suppose I just wanted to echo some of my confusion re the disease. My first post. I read the web articles but probably leaves me more confused than enlightened. Not really sure what the right thing is to do AS THE PATIENT, what questions to ask and similar to you, how to describe how I physically feel. Bit like trying to describe not quite normal.

[The_simple_life]

Update:

Thanks so much for all of your comments and insight into your experiences so I can relate it to my own for context. Really useful! I'm so glad I found this group.

I'm off to the docs today (again) and off to the Haematologist on Wednesday this week. The ALT serum level, and WBC increase along with my other symptoms (fatigue etc etc) are what's causing my doc the concern. I'm happy that's she on it and pushing for an answer for me.

Thanks