Acalabrutinib

[kitchengardener2]

Saw consultant this afternoon. All still good and on track. White count down again to 33 (normal being anywhere between 4 and 11. When I started treatment, mine was 250! Heamaglobin still the same but still fine, kidney and liver function both good. Neutrophils are 4.5. She will see me in another six weeks, would have been eight but that would hit Christmas. I feel so much better now that the appointment is over. Still no antibodies because Acalabrutinib being a targeted drug affects the immune system. So no mixing still, all in good time.

Stay safe and well.

[Mtk1]

Sounds like you are doing well, I don’t see my consultant for 12 weeks so won’t know if we are still on same path, but I’m taking encouragement from your numbers, 8 weeks on acalabrutinib and I’m feeling good.Keep safe Dave x

[kitchengardener2 in reply to Mtk1]

Stay strong and stay safe xx

[Walkingtall62]

Well done. Take care

[JLJC]

Thank you for sharing your updates. I have an appt Wed and feel Dr will want me to start Acalabrutinib soon. Hemoglobin creeping downward with each visit. Thanks again for sharing and glad all is positive news (except antiibodies) i guess us not mixing and practicing be careful is our new normal 👀

[1ofakind]

Enjoy the good news - and continued good health!!Thanks for posting and letting us enjoy with you!!

Stay Healthy!!

[stevesmith1964]

Question, why no mixing ? If you take precautions etc. I am on acalabrutinib in remission, no antibodies after 2 jabs and 2 covid infections. Living life to the full....with some caution..Stay safe.

[kitchengardener2 in reply to stevesmith1964]

Consultant just said better not to mix because there is still so much covid about, it's quite rife here on the east coast with all the visitors.

[MovingForward4423]

BTK inhibitors are amazing. One year on from starting of Ibrutinib my bloods are completly normal. WBC is 5 and Lymphocytes are 1.9 I would suggest you will be very normal very soon. I lost 100 off my Lymphocyte count in the first 18 days, then it slowed and took about 6 months to get to a count of 4.

[kitchengardener2 in reply to MovingForward4423]

You give me great hope, thanks 😊

[MovingForward4423 in reply to kitchengardener2]

Side affects may hit you a few months in. Push through them as things settle down. Acalabrutinib has less side effects than Ibrutinib.

[kitchengardener2 in reply to MovingForward4423]

What kind of side effects can I expect? Just noticing much drier hair and skin. x

[MovingForward4423 in reply to kitchengardener2]

Yes I get dry skin, mostly joint pains for me. It passed after a year.

[kitchengardener2 in reply to MovingForward4423]

Can cope with that. Wonder if anyone has had pain on lower right side of abdomen? Not so much pain more discomfort. Had CT scan in January and nothing nasty showed up. Try as I may, I can't get to see a GP only a selection of support assistants and nurses. Waiting results of stool samples tests but I scared myself after reading that CLL being treated with Acalabrutinib can sometimes lead to enteritis colitis and neutrapenia. Going stop looking at Dr Google.

[MovingForward4423 in reply to kitchengardener2]

Probably good to have bloods regularly for your bio chemistry. When you call the GP you have to enforce you have cancer, are at risk of infection and need a physical appointment.

[MovingForward4423]

I’ve been on Ibrutinib for a year now. My bloods are normal, no side effects ( at least at the moment Heading into year 2 of treatment from December. I worry about resistance, I worry about transformation, but I am healthy right now.

[Wetumpka]

calquence is a wonder drug

[kitchengardener2 in reply to Wetumpka]

It certainly seems so, fingers crossed 🤞