Calquence First Week

[helenolton]

I just started taking calquence, after three days my blood test showed my White Blood Count went from 95 to 253. Has anyone had their White Blood Count go up so high?. I am having headaches and terrible pain throughout my body.

Thanks Helen

[cajunjeff]

Helen, a big jump I’m wbc after starting calquence is normal. The medication is chasing cll cells from lymph nodes into the bloodstream where they can be killed. Your wbc should eventually move back towards normal.

But I am not a doctor and this is just my layperson understanding of things. Your concerns are best addressed with your doctor.

[helenolton in reply to cajunjeff]

Thank you so much for your reply. I just seen my Dr. and he said to give it two more weeks.

[Fowey2009]

yes my husbands doubled in the first week and then settled down

Good luck with your journey.

Beryl

[helenolton in reply to Fowey2009]

Thank you. Enjoy your evening!

[CycleWonder]

Others have noted drinking regular coffee in the morning relieves the headaches.

[helenolton in reply to CycleWonder]

Thank you!

[Panz]

What you you say is going on for you is exactly what happened to me and those were killer headaches, however, coffee did the trick….if you don’t drink caffeine pils are available. I had other minor side effect and they came and went off and on for aboyt 6 months but now at the end of my 9th month today my WBC was 5.8 and I had hit 300 just 9 months ago. I have never felt better so I implore you to hang on!!! I am here for you all the way….you don’t need to do this alone. So happy you found our community it is a good place to be. Hang in there!

Panz 🙂🙏☘️💕🌈👍

pills are available

[helenolton in reply to Panz]

Thank you, Have a great evening.

[Shepherd777]

My wife has just finished her 3rd month on Calquence. Her absolute lymphocytes tripled in the first couple of weeks and presently have stopped climbing and are stagnate. Her CLL doctor is expecting the numbers to start slowly dropping now.

The discomfort and headaches are probably due to the inflammation/cytokine release from dying cancer cells. We found Tylenol took care of the headaches and they only lasted a couple of hours each day before disappearing after a couple of weeks.

[helenolton in reply to Shepherd777]

Thank you.

[kitchengardener2]

Hang in there lovely, it should settle down. Have you been given Allopurinol as well? If so have a good strong cup of tea/coffee first thing, that sorted my headaches out. I was also told that paracetamol was fine. My white count halved in the first 4 weeks of Acalabrutinib.

Stay strong, Alice x

[helenolton in reply to kitchengardener2]

Thank you

[helenolton in reply to kitchengardener2]

Did Allopurinol help lower your white blood count? My dr. just gave me this drug three days ago.

[AussieNeil Partner Administrator in reply to helenolton]

The purpose of allopurinol isn't to lower the white blood cell count, but to lower the levels of uric acid resulting from the death of so many CLL cells. It should be commenced 2 to 3 days before you start treatment, if that treatment is considered likely to cause the rapid death of a large number of CLL cells.

Neil

[helenolton in reply to AussieNeil]

Thanks Aussie

[kitchengardener2 in reply to helenolton]

Please see Neil's reply below. I was taking it for 3 months. I know have the Acalabrutinib, Aciclovir and three days each week I take Co Trimoxazole.

Good luck

[helenolton in reply to kitchengardener2]

I am on Allopurinol, does that help with bringing down the White Blood Cells. Also, did you have low platelets mine right now are 58. Dr told me I might start on Gazyv, that has lots of side effects. My Dr. is not a Cll Specialist but I am seeing another Dr. who is but is 6 hrs away. I will be seeing my Dr. at Ohio State next month. Right now I am getting all the information from all of you, and I will be giving it to my Dr. here. Want him to know it is common for your white blood count to go up high. Thank you for all the information.

[AussieNeil Partner Administrator in reply to helenolton]

Hi Helen,

Consolidating the answers to your questions:-

1) You need to monitor your white blood cell differential, not your WBC count. That's because you need to ensure that your neutrophil count doesn't go too low while your absolute lymphocyte count - ALC (and hence your WBC count) goes up. Your doctor will want to see your neutrophil count kept above 1.5. If it drops below 1.0, he should be looking at supporting your neutrophil production with subcutaneous G-CSF shots into the skin over your abdomen, or delaying (e.g. obinutuzumab infusions) or reducing the dose of your medication. Only about two thirds of people on BTKi drugs like acalabrutinib see their ALC rise. Mine more than tripled until obinutuzumab infusions took care of the CLL cells.

As I mentioned earlier, allopurinol protects your organs from the high uric acid levels caused by the die off of so many CLL cells. It doesn't change your ALC/WBC. You only need to stay on allopurinol for the time when you are experiencing that massive die off of your CLL tumour. It helps prevent Tumour Lysis Syndrome.

2) Your bone marrow blood cell production may be impacted by acalabrutinib briefly - until the acalabrutinib takes care of enough CLL cell infiltration for your bone marrow production to improve. So your Red Blood Cell count and hence your haemoglobin may fall. If your haemoglobin drops below typically 80, then anticipate being given packed red blood cell transfusions. Platelets infusions are recommended if platelet counts drop below10, (below 20 if you have an infection). Platelets don't last long in your blood- about 10 days. Platelet transfusions last a shorter time - about 4 days.

Hang in there. Three years after starting treatment, my CBE counts are the best they've been in over 16 years - from before I was diagnosed with CLL/SLL.

Neil

[helenolton in reply to AussieNeil]

Thank you

[Handley]

Hi Helen - I am in the same place as you. 3 weeks into acal, blinding headaches and occasional dizziness plus the brief but extreme pains you mention. Mine tend to be in my upper arms and somewhere in my torso (!) and last around 5 mins. You and I need to make a pact to stick with it because others have done so and emerged feeling better and with better blood counts to prove it. It is hard going, but let's keep going like others have done. My very best wishes to a fellow warrior! Handley

[helenolton in reply to Handley]

I am going to stick with it. I have lots of prayers coming my way, and are very thankful. Hope you get better soon.

[helenolton in reply to Handley]

Hello...Do you have low red blood cells and platelets? My pain starts up 30 min after taking the medicine. My knees, arms and headaches lasting for three hours.

[AussieNeil Partner Administrator in reply to helenolton]

Handley and Helen. see my answer to Helen's question: healthunlocked.com/cllsuppo...

[SERVrider]

Mine did the same to the extent my GP rang me with concerns about the sudden spike in WBC count on a normal DM2 blood check. When I told him the haematologist had started me on a BTK inhibitor, he was relieved.

[helenolton in reply to SERVrider]

Thank you.

[whmk]

yes - it should come back down in a few weeks.

[helenolton in reply to whmk]

Thank you.

[Sushibruno]

Hi helenolton, I just want to thank you for sharing your journey with acalabrutinib and your experience when it comes to side effects on acalabrutinib. I can relate to almost all your symptoms. Thank you. I hope you're doing better.