Need advice on Acalabrutinib will start treament next month

[zitchie]

My oncologist had taken me off of Ibrutinib after 10 weeks due to untolerable side everyday. I was advised to rest for one month and will start Acalabrutinib on Oct.

[lankisterguy Volunteer]

Hi zitchie,

I see you joined us today, welcome.

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While we don't have any background information from your profile and your posting is not locked ( healthunlocked.com/cllsuppo... ) your word choices and spellings suggest you are in the USA.

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What you describe is a fairly common sequence - assuming that Ibrutinib was effective in reducing your nodes and starting to lower your ALC / Lymph#. Most experienced CLL doctors would take that as a sign that the BTK inhibitors will work well, and switching to Acalabrutinib might reduce the side effects for you.

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If you want to read the experiences of other members that started Acalabrutinib / Calquence please look for the box on this page labeled: Related Posts

*Starting Acalabrutinib

healthunlocked.com/cllsuppo...

*3 months Acalabrutinib at NIH

healthunlocked.com/cllsuppo...

*Starting Acalabrutinib- my experience

healthunlocked.com/cllsuppo...

*Started Acalabrutinib Yesterday

healthunlocked.com/cllsuppo...

*Starting Acalabrutinib for SLL healthunlocked.com/cllsuppo...

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Again, welcome to our group, and as we learn more about you and your situation, we may be able to help you with more specific experiences.

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Len

[zitchie in reply to lankisterguy]

Thanks Len.

[country76]

I had many side effects with Ibrutinib and switched to alacabrutinib. I just went right into it no waiting. Almost all my side effects are gone. Still some bruising however less and the rash on my legs and tops of my feet still there. The rash doesn't bother me.

[zitchie in reply to country76]

I am still feeling the side effects of Ibrutanib and I lost almost 14 lbs since I started treatment. My nausea, dizziness, feeling of faint, bloatedness, insomia and chest pains still persist. I used to weigh 138 before cancer diagnosis now I am down to 106. Hope acalabrutinib will be better meds for me. Thanks

[country76 in reply to zitchie]

Almost all my symptoms were gone immediately. My hypertension slowly has gone down. I am still on BP meds, still have my leg and feet rash and less bruising.

I hope you saw a doctor regarding your chest pain. Alacabrutinib has worked great for me and I hope it does the same for you.

Ibrutinib did it's job and works great. Many people take it without side effects.

I had problems right from the start so I think I was sensitive to the medication.

The best of luck to you.

[zitchie in reply to country76]

It is good to know that I can get support from this site. I am 56 years old and never have problems with my heart until now. I am going to see my gastoenterologist and cardiologist before my acalabrutinub treatment just to make sure. Do you get back from your normal activities after taking the acalabrutinib? What is your dose and when do you take it. Thanks for takin g time to reply.

[country76 in reply to zitchie]

I take 100mg twice a day, 12 hours apart. 7 am and 7pm. It has taken my blood pressure a while to go down. I still take medication which was adjusted.

It is scary to have heart problems, hope they aren't serious and can be resolved.

Since I noticed I had no cramping or knee pain so I started walking again. It has taken a while to get my legs in shape again. They felt tight and a little weak in my thighs, I figured they were just out of shape. Before getting sick 2 years ago I walked 2.5 miles a day as well as other activities.

Because of COVID I stay home and just walk up and down my street which has a slight hill. Smoke from the fires and COVID has certainly changed our lifestyle. I am learning to make quilts since I am stuck at home.

Sometimes I feel slightly dizzy. I thought it was from my BP pills. I never felt nauseated, I gained weight, no chest pain however heart palpitations which I always had. Now they are less. I did have some bloatedness, not now.

I had different side effects than you. We are all different. I can't guarantee how you will react. This is my experience.

I hope you feel better and your side effects go away.

[zitchie in reply to country76]

I have enlarged spleen and I eat slowly and small portions because I feel breathless. I also need to have my AC at 66 degrees to make me feel comfy. Does CLL does this?

[country76 in reply to zitchie]

I am not a doctor however Cll did enlarge my spleen. It can push on other organs. Your doctor has to answer why you're breathless. I ran the air conditioner in my car constantly however I don't know if related to Cll.

Keep a list of all your symptoms and questions for your appointments. This will help you and your doctor.

[zitchie in reply to country76]

Thanks soo much for your advise. I called my GP today and he said that I should stay indoors because of the smoke cause by fires here in Cali that triggers my asthma and allergy that makes me breathless.