I have a great report on how well Acalabrutinib is working. Start date for Acalabrutinib treatment was May 28 and today on October 28 (5 months later) I had a CT Scan and there has been a significant interval positive response to the treatment. Very happy!!! As most of you are aware, a couple treatment goals for Acalabrutinib is to decrease the size of lymph nodes and decrease the size of an enlarged spleen. Below are the results comparing size today (October 28, 2020) to that on CT Scan taken on May 28, 2020 showing how it worked with me. The treatment is working!
The spleen is decreased in size measuring 13 cm [previously 17 cm]. 13 cm is close to normal.
Left para-aortic lymph nodes today measure up to 14 mm short axis [previously 34 mm].
Left iliac lymph nodes today measure up to 8 mm [previously 23 mm]. Right pelvic lymph nodes measure up to 9 mm [obturator internus] , previously 23 mm]. Right iliac lymph nodes measure up to 9 mm [previously 29 mm].
Left axillary 8 mm [previously 22 mm]. Right axillary 6 mm [previously 15 mm] . Subcarinal 7 mm [previously 14 mm]. Right hilar 8 mm [previously 16 mm]. Right paratracheal 4 mm [previously 9 mm]. AP window 6 mm [previously 9 mm].
I’m surprised and totally pleased with the results and hope this will serve to encourage others who just got started taking Acalabrutinib.
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Drago1941
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Thats very heartening news. I started Acalabrutinib this week - on day 4- and desperate for it to work. Do you have any side effects? I haven't had any yet and so wondering if they are still to come.
I had only headaches and strangely, blood blisters inside my mouth. Very minor. Currently, I have experienced no side effects for the past 2 months. As others have advised, coffee clears up the headaches. Also, we all have different side effects. I'm very pleased that the reward of the treatment working is far greater than few side effects that I experienced.
Absolutely thrilled for you!!! The strides that have been made in blood cancer medication is astonishing. Fantastic results such as this gives hope to everyone in our CLL community.
You must feel great about how well Acalabrutinib is working for you Drago. I am on it for 8 months and even though my CT was not as exciting as yours, it did show Acalabrutinib is doing it’s work slowly. I don’t mind the speed, as long as they are shrinking, I am happy.
That is terrific news. I started my A treatment approx 2 months ago and my Petscan showed a 50% decrease from previous Pet. Oncologist may be switching me to VenG next year - depending on COVID. Is Acalabrutinib the only treatment your oncologist recommends for you? So happy for you - and for all of us that are so fortunate to be treated with these breakthrough treatments.
I've been on Acal for 30 months and doing great. Blood work is all within the normal range except for IgG. My CLL specialist has chosen not to do CT scans as it does expose one to a small amount of radiation and that's the last thing a cancer patient needs.
I'm not aware of any Acalabrutinib specific reason for abstaining from drinking alcohol, other than the fact that you are putting an extra demand on your liver when it is already busy dealing with the additional demands of processing the Acalabrutinib and what's being released into the blood stream by the dying CLL cells.
Results from an early Ibrutinib maintenance trial found that after 4 years, only 10% reached uMRD, which meant that perhaps those patients could stop taking Ibrutinib. So for most on maintenance therapy, it's a matter of staying on Ibrutinib to keep their CLL under control, or perhaps switching to a newer generation BTK inhibitor such as Acalabrutinib, if side effects are a concern.
Some may elect to switch to a combination drug approach, usually by the addition of Venetoclax, hoping thereby to reach uMRD and hence go back onto a hopefully very long watch and wait. We are still accruing long term data so we can determine who is most likely to benefit from the combination approach.
I believe we are already increasing the proportion of us for which this is the case, in addition to those who already will not need treatment. Treatment naive folk and those with good markers will be the first, followed by those of us who have been previously treated and/or who have more challenging prognostic markers. Our diminished immunity is going to be the more difficult, long term challenge, but we've all learned how to reduce our risk of infection thanks to the coronavirus pandemic!
I will not know until November 17th at which time I will have the results of blood work done on the 16th. Last one was about 3 months ago and the hematologist was quite pleased. I'm thinking of posting the results once available.
Great news on the results! The blood count is normal except for the leukocytes (WBC) and lymphocytes. However, with them there has been a dramatic drop. The leukocyte (WBC) count on July 16, 2020 was 129,830 cells per mm3 and is now at 12,870 cells per mm3! (Normal in Canada is 4,000 to 11,000). The lymphocyte count on July 16 was 98,670 cells per mm3 and is now at 6,350! (Normal in Canada is 1500 to 4000). Prior to starting treatment on May 28th with Acalabrutinib, my WCB was 57,660 on May 16 and lymphocyte count was 43,820. Acalabrutinib is doing its job and with very little in the way of side effects. Call it a "gentle" treatment for my CLL problem.
No problems. Good question about fatigue. Initially when I started the treatment, there was muscle soreness and tiredness, but not severe. Right now, I am not experiencing any side effects.
My mom’s been on Acalabrutinib for a little over a year and all of her blood work is in normal range except for her IgG. Her nodes have shrunk tremendously, but are still there. She gets an occasional headache still (drinks coffee to cure it) and had some random nights sweats/fatigue, but nothing like before she started treatment. We’re hoping she keeps going in the right direction! We are so excited for her progress and truly hope that this gives her a normal life expectancy.
Wonderful news! And thanks for sharing. It's going to be a year at the end of May for me. Same results although I don't get IgG blood work done here in Canada. Can't comment on this. With all the alternatives for treatment, I think there is hope for us to have a normal life expectancy. I also hope your mother keeps moving in the right direction!
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