I don’t know what to expect or do 🤦🏽‍♀️

[CoachVera55]

I am 9 weeks on Acalabrutinib 1/2 dose. My starting labs 4/17/23; Hgb 10.8, Plts 76,WBC 81 & ALC 78 & today 7/17/23; Hgb 11.2, Plts 72 (max 118 -> lowest 40), WBC 32 & ALC 30.

So the Hgb is stable but not normal, WBC/Lymph are dropping like we want but what’s up with the Platelets Dropping??? Is it working, do I need to go to full dose or will that just make things worst? Any advice, opinion or experience would be greatly appreciated.

I am also feeling palpitations & this new right side abdominal pain that I never had before so I demanded a CT Scan of my Abdomen. I am still searching for a nearby CLL Specialist & still feeling mistreated at this cancer center😓 thanks in advance🙌🏾

[AussieNeil Partner Administrator]

You've said your haemoglobin is stable, but not normal, but an increase in haemoglobin from 10.8 to 11.2 is actually more encouraging news than this slight drop in your platelet count. That's because it's considerably more difficult to achieve a tight repeatability tolerance with platelets than haemoglobin, because platelets naturally tend to clump together. A variation of 4 with a platelet count in the 70s is less than the variation you'd see in retesting the same blood sample.

Relax

Neil

[CoachVera55 in reply to AussieNeil]

Yes Relaxing would be nice but highly doubtful 😞 Platelets have been low normal for years. Zanubrutinib brought the Plts up to 118 & Acalabrutinib brought them up to 98. I need them 3 digit numbers to relax. Plus I am bruising like never before, so not cool 😓 It is good to see the WBC/ALC dropping & Hgb stable tho.

Frequent Bruising 😩

[kitchengardener2]

I have been taking Acalabrutinib for two years now I have tolerated it very well. I did notice nighttime heart palpation and a bit of discomfort in my lower right side. That was probably a year in and despite investigation, nothing untoward or linked to the Acalabrutinib was found. Possibly AFIB was diagnosed last year but nothing definite. I added Apixaban to my daily medication but a cardiologist wasn't concerned. My white count started falling within weeks and now all my numbers are considered within normal ranges.

I suppose (and I am) lucky in that I have never felt ill or displayed signs of CLL, other than raised lymph nodes. That was how it was diagnosed.

[CoachVera55 in reply to kitchengardener2]

So they added a blood thinner, sounds like Afib. I never had right side cramping pain, very unsettling because I think of Richter Transformation because my brain is just wired like that. I am feeling the 2 steps forward & 5 steps backward merry go round😩 I wish the headache & body aches were just it!!!

[Alex830]

I see a CLL specialist at a cancer center. Hemoglobin 10.8 or above is considered within range there. I am on Venetoclax and rituximab since February, my hemoglobin is still under 10.8, last it was at 9.7. My doctor isn’t too worried. Interestingly while on acalabrutinib my hemoglobin was fine.

[Eucalyptus22]

I have been on Acal for nearly 3 years and in last month have developed anxiety and heart palpitations. Have had ECG and nothing untoward. I think the anxiety and palpitations are linked as I can control them with meditation breathing and lavender oil. I feel fit and healthy so think the anxiety is the outcome of 3.5 years of living life on the edge and being on hyper alert due to covid.

[SofiaDeo]

I think we often have "adjustment periods" when starting new meds. So numbers may fluctuate a bit until bone marrow learns to live with the meds. IMO it takes a while to see if a "downward trend" is clinically significant or just random fluctuations, especially with neuts and platelets that can fluctuate even in normal people. Some here have easy bruising throughout the time of their treatment, others adjust. Even with all my BTK problems, some symptoms (like nosebleed) cleared up once my body adjusted. I know you are mindful of nutrition, but maybe consider even more protein/micronutrients temporarily (assuming it's OK to do so) in case the drug is irritating GI tract and you aren't absorbing well? Not to mention how "stress" negatively impacts nutrient absorption, and can contribute to an inability to absorb nutrients.

We get this diagnosis, and "starting treatment" triggers a bunch more stress.

apa.org/topics/stress/body

[CoachVera55 in reply to SofiaDeo]

Yes thanks, I do believe its an adjustment period or maybe where I will stay 🤦🏽‍♀️ I am also thinking that if so many continue to bruise easily then maybe the Platelets notoriously stay low 🤷🏽‍♀️. I feel good, energy is good, the aches & pain are easing up, digestion/elimination is good so maybe this is it for me. I panic & then logic fuses in lol. I hope I can stay here & stabilize for awhile. Definitely not ready to jump onto another treatment!!! Also with the palpitations I felt it happened when under extreme stress altho I will follow up with Cardiology. Plus I am still recovering from a near death experience with the lungs collapsing. So my efforts are focused on providing the best internal & external environment for my mind/body/soul I am still healing… TLC to Max🎉🎉🎉