So, three weeks on Acalabrutinib and a visit to the haematologist. Results are looking good. After an initial rise, WBC is now on the way down. Platelets are up, as is haemoglobin. The spleen, which at the start of treatment would have won prizes at the county fair, can now not be felt.
So feeling pretty pleased.
That all sounds positive. You have given me hope. I have a CT scan booked for 24th and bloods for 26th and 5th before seeing doctor on 9th. I have been told that if bloods are ok then I may expect to start Acalabrutinib. Will you keep in touch so we can perhaps compare notes?
Happy to do that. Good luck with your CT scan and blood work.
Thank you, very grateful.
May I ask if you are in a clinical trial. Is that why the CT scan?
Jeff
Hello Jeff, no not in a trial. I was diagnosed two years ago and have continued to feel well. However, with the current situation I haven't seen my consultant since March but have had three telephone consultations. My WBC has increased and I appear to have some anemia. My nodes in my neck are no different but my consultant wanted to do a CT scan as a routine to check on my abdominal nodes and spleen. She has requested two lots of bloods to see if my CLL has mutated, she says she needs to check this point because if there is mutation, I cannot have Acalabrutinib. As I said, I feel extremely well most of the time.
Alice
Alice,
I can’t grasp the need for a CT scan for a “mutation “ as your doc calls it. Symptoms and blood tests would suffice for most Cll experts. Please read this from Dr Furman, I posted this last week
patientpower.info/chronic-l...
I strongly suggest a second opinion from a Cll expert.
Jeff
Hi Jeff no she said the CT scan was check lymph nodes in my abdomen and also to check my spleen. I had one two years ago as part of my original diagnosis.
Alice
Wow, that was fast!
Certainly was. Surprised me. Expected to have to wait a few months to see any positive results. Not complaining though.
I like you, Solly. You seem healthily comically absurd. CLL can bring that out in a person, I suppose. ... How’s the mouth?
Thanks for asking DRM. The mouth is now fine. All the blood blisters have now cleared. They weren’t painful, just irritating.
Wonderful news and very heartening. I start Acalabrutinib on Thursday. I shall follow you to see how you get on.
Good luck with your startup. We are all different and will react to medication differently of course. But s far the side effects have been mild. Headaches at the Day 3 point (still getting those), oral blood blisters that were irritating but not painful and lasted about two weeks, some areas of petechiae that are now fading and some muscle aches in my calves.
But none, and I stress none, of the above were debilitating. Headaches disappear after a large cup of coffee. The Petechiae are painless and do not itch. The muscle ache is a very minor niggle.
I wish you all the best and will follow your progress. You give those of us who are scared sh*tless of what our future holds, a calm reassurance. Thank you.
Thanks Hilomom. Much appreciated. Will keep you posted on progress.
Hi, Sollythegolly, I am very happy for your results. Can you pls give us the ball park numbers of your CBC test. You can see mine on my profile. I am 7 weeks on acalabrutinib, being only on 1 pill because of the side effects, mainly digestive problems, bloating and constipation. I am trying to adjust my diet and I started the second pill two days ago. I do not feel much improvements in my spleen condition, which was 21cm before starting treatment . Everybody reacts differently... I will have my blood tests in a couple of weeks. I will post my updates...
Sending all my best wishes...
I’ll post them when I get them Belkin. My consultant gives me a broad brush idea of what’s going on with my bloods, and then a week or so later I get a letter with the details. Only had the consultation yesterday.
Many thanks for the good wishes.
So, have just received the usual letter from my haemotologist with the results of my blood test. The first figures are the results from two days after starting Acalabrutinib, and the second is three weeks later;
Hb 109 115
WBC 139 123
Neutrophils 3.2 4.2
Lymphocytes 134 Not reported
Platelets 49 75
Keep in touch. Thanks
Very good news👍🏻 I am also on Acalabrutinib for 8 months now and doing well.
After the headaches disappeared my only side effects are occasional heamatomas on my forearms and fatigue.
Dana
Good to hear Dana. Long may your progress continue. 👍👍
Yay for you!!! So very happy to read such a positive update. Wishing you continued success!!!
Nan
Thankyou Nan.
SLL and Acalabrutinib 
Switching from acalabrutinib to ibrutinib
Acalabrutinib treatment going well
