Acalabrutinib treatment going well

[sandybeaches]

I have been on one dose daily of Acalabrutinib for 4 weeks now and am doing quite well. The fatigue has improved quite a lot, although I won't be running any marathons, and I don't feel sick every day. So a good response in my opinion.

Headaches and some muscle discomfort daily but Tylenol dampens down these symptoms. Just a bit of nausea at times but this goes away with some ginger or a ginger ale.

Blood work stable except for a slight drop in platelets, and will be monitored monthly for awhile. My prescription is on a monthly basis for now. Will see my doctor in 2 months.

Sandy Beaches

[Sushibruno]

Hi, I was wondering, is there a specific reason for the 1 dose. It’s supposed to be taken twice a day. Tell u the truth I would love to be on 1 dose myself.

[albie58 in reply to Sushibruno]

Hi Sushi!

I started at 2 a day. Around the middle of the 2nd month I became so fatigued it was hard to do daily activities. I also broke out in a rash , my red cells, platelets and neutrophils kept dropping, and my liver enzymes started to climb. So my doc took me off for a week which reversed alot of those symptoms and then put me on one a day. The fatigue is gone. My cytopenias are reversing , however my liver enzymes are being stubborn. Not climbing any more just stable. But I feel so much better on just one a day. And at this point my spleen and liver are normal and my lymph nodes are gone. Hopefully, one pill a day continues to work.

[Sushibruno in reply to albie58]

Hi albie, good to hear you’re stable on 1 pill a day. I read somewhere here in the forum that some people do well on acalabrutinib once a day. I also read that it should be tailored for each individually depending on weight and circumstances. In my opinion this makes allot more sense and doctors should put more emphases on this.

[sandybeaches in reply to Sushibruno]

It was started at 1 dose per day to see if it would help the fatigue. This will be re-evaluated at the beginning of October, depending on blood results and how I am feeling.

Hope you are doing well.

Sandy Beaches

[Sushibruno in reply to sandybeaches]

Thanks Sandy. Wishing you well.

[albie58]

They should but trials would need to be done to determine what does would work. Then to go further researchers should divide does into more than just two tablets a day for reduced dose so say 50 mgs a day instead of once at 100. But work has to be done on this and that takes money.

[Skyshark in reply to albie58]

After they did all that work for GAZYVA, they found that weight and gender both affected the titration levels but not to the extent that a modified dose was thought necessary.

[kitchengardener2]

Oh well done, it is a wonder drug as far as I am concerned. I take two doses but after two years, have good partial remission.

[CoachVera55]

The medication pamphlets say as much to tailor for the individual. Zanubrutinib specifically has a clause ‘Manage Toxicity using treatment interruption, dose reduction, or discontinuation’.

You are fortunate to have a doctor to listen & without one I had to get very familiar with this information myself. Plus I love one persons response to my question about ‘am I being a baby for not jumping into treatment after 13y 8m of W&W’ & he said ‘don’t let them Over Medicate You’. Definitely words to live by.

If its a chronic disease like HTN or Diabetes then the cure can not be worst than the disease in my humble opinion. If I wind up in the ER 3X in 3 months then Dammit Houston we have a problem & you don’t need a MD, PHD or GED to figure that out. That is if you are paying attention or give a damn. So good for you CLL Sis, I don’t follow the crowd no way. I am on 80mg of Zanubrutinib until this Lung Issue clears up periodt😠

[SLLJOHN]

I’ve been on Alcalabrutinib for a couple of years now, very quickly reduced to one tablet for similar reasons to yourself. I had 3 years on Ibrutinib prior to moving to Alcalabrutinib which did the trick too but in my opinion is an inferior older cousin. Loving Alcalabrutinib and back to normal life. I should say I had AFIB most likely caused by Ibrutinib (although some debate whether a 65 year old might get it in anyway), that was cured with a cardio inversion and then an ablation.

[BobbyFour in reply to SLLJOHN]

It is nice to read that your heart problems were treatable!

[Unglorious]

Thanks for sharing your experience. It will help others who think of doing the same due to the extreme side effects that some individuals have to deal with because of the 2 pills a day dosage. At this time blood tests are vital. Wishing you continued success.

[BobbyFour]

Great news!

[Louis33]

I am so happy for you!! Soon you will be back to your old self ( fit and all) as you were before being ill. You'll see. Take great care of yourself.