Acalabrutinib is working!

[Drago1941]

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.

[MsLockYourPosts Passed Volunteer]

Great news!

[LovelyLilyGirl]

Wonderful news!!!

[Solentgirl]

Great News !

[Eucalyptus22]

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.

[Drago1941 in reply to Eucalyptus22]

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.

[SOLLYTHEGOLLY]

That's great news. As a fellow Acalabrutinib taker since last month, it gives me hope and confidence.

[Smac29]

Great news!!

[ClassyLady3]

Thank you for posting. I am on day 7 of Acalabrutinib and can “feel” the lymph nodes shrinking 😊

[Eucalyptus22 in reply to ClassyLady3]

Me too! I'm day 5 and the lymph nodes on my neck are barely detectable already!

[Pacificview]

Sure is good news, congrats and thank you for sharing that.

[Rhythmauthor1]

Congratulations! That’s really positive news!

[Sojomama13]

Drago1941,

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.

Best,

Sandy

[studebaker]

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.

So, 🥂to you Drago.

Dana

[Corgiluvr]

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.

[Drago1941 in reply to Corgiluvr]

Thank you. Yes, Acalabrutinib was the oncologist's strong recommendation. The other alternative was Ibrutinib.

[uihwki]

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.

[showdog]

That is what I will start soon. I feel more comfortable with that med. Did you get headaches?

[Drago1941 in reply to showdog]

Yes, I did initially; however, not too severe. Coffee took care of the headaches.

[showdog in reply to Drago1941]

Thank goodness I hate headaches lol

[deblen]

Does anyone know of we have to stay on alcohol for good

Thanks deb

[AussieNeil Partner Administrator in reply to deblen]

I think you meant 'off alcohol'?

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.

Neil

[deblen in reply to AussieNeil]

Hi i meant does anyone know if you have to stay on acalabrutinib for the rest of your life

[AussieNeil Partner Administrator in reply to deblen]

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.

Neil

[J_88 in reply to AussieNeil]

If we have to take medication or be treated every 5 or so years i think thats ok. As long as it keeps the CLL in check.

[J_88 in reply to AussieNeil]

Neil, do you think that with all the medication we have today that we will have a near normal life expectancy with CLL?

[AussieNeil Partner Administrator in reply to J_88]

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!

Neil

[Test_Tech]

Hello Drago1941, Congratulations on your progress. I am still on the fence about Acalabrutinib. How do your labs compare now to then?

Thank You

Test Tech A

[Drago1941 in reply to Test_Tech]

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.

[Test_Tech in reply to Drago1941]

Good luck on your labs. Hopefully you can post them.

Thank You

Test Tech A

[Drago1941 in reply to Test_Tech]

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.

[Test_Tech in reply to Drago1941]

Great news on your labs Drago, I hate to nickel and dime you with questions so the last one is, has your fatigue subsided yet?

Thanks Test Tech A

[Drago1941 in reply to Test_Tech]

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.

[Test_Tech in reply to Drago1941]

Thank Goodness.

Everett

[Nikki4470]

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.

[Drago1941 in reply to Nikki4470]

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!