Acalabrutinib three weeks appointment

[studebaker]

I don’t know where my previous post went. Very likely, I did something wrong, so here it goes.

The only side effect was bad headache for one week after which it became dull and I don’t even need to take Tylenol. Some fatigue and less energy and that is all. 👍🏻

My results are: WBC low at 3.9, urea High at 6.6, sodium Low at 130, chloride Low at 93, total bilirubin High at 23.

My doctor was concerned about my sodium and is going to watch it.

My question is should I see my GP to see if any investigations for my liver and kidneys are needed? Any advise is appreciated.

Overall it was a good visit and I like my specialist now.

Having a CT to check on lymph nodes in 6 moths. They must have shrank a little as I am more comfortable when sitting and bending.

Dana🤗

[Canuck901]

Are you taking alluprinol ?

[studebaker in reply to Canuck901]

Yes.

[Big_Dee]

Hello studebaker

The ideal solution is to have your CLL Specialist and GP work together. My CLL Specialist monitored both my liver and kidneys during W&W, treatment and post treatment. My GP also does same and has made med changes which effected my liver. Blessings.

[studebaker in reply to Big_Dee]

Thank you for taking time to answer and take your advise and I will talk to my GP about it.

🤗 Dana

[bhayes84]

As long as your ALC continues to drop I don't know why your doctor would expose you to the radiation dose for a CT scan (though it's admittedly low).

[studebaker in reply to bhayes84]

Because of the size ( some 18cm lymph nodes in my abdomen) to see the progression and justifying the need for treatment.

At the original diagnosis 2 years ago it was ultrasound for something else, which found the multiple huge nodes. I think, I had it for years before that though. There were two small pelvic nodes found about 15 or so years ago. They were followed by a CT for 4. months and then I was told not to worry about it and that I think was my beginning on this journey.

There was uninterrupted uninvited nodal party going on until two years ago when my GP panicked and personally phoned the specialist to see me. After more testing and two biopsies (neck and abdomen) the diagnosis CLL/SLL was confirmed and the treatment started immediately.

My CLL/SLL is hiding in my lymph nodes. My blood is not the best indicator of my progression . My blood was never terrible enough to justify the treatment.

We all have different journey with this and I am so happy with my new specialist who is explaining everything and discussing options and reasons for treatment and need to have occasional CT as there was question of transformation twice.

Sorry for the long reply and Thank you for reading this if you are.

🤗

Dana

[bhayes84 in reply to studebaker]

Thanks for the explanation Dana. Sounds like your specialist has it under control. It's good he's explaining what and why he is doing each step.

Good luck on your journey.

[studebaker in reply to bhayes84]

Thank you and the same to you 🤗

[Canuck901]

That’s great you are tolerating the acalabrutnib well , it’s the Gen 2 version of BTK inhibitor and it will replace ibruntnib in the coming. Years.

Apparently the same drug researcher that invented Ibruntnib switched companies and then invented Acalabrutnib.

Please Keep us posted on your results !

I assume you’re on the full dose ?

1 pill twice a day ?

[studebaker]

Yes two pills a day 12 hrs apart.

I hope it will work.

Thank you for replying

Dana

[country76]

I am taking Ibrutinib however my sodium went down with my Cll and I was taken off hydrochlorothiazide .

[studebaker]

I will be talking to my cardiologist when I see him in two weeks about stopping hydrochlorothiazide.

Thank you for your suggestion.

Dana

[bayside64]

Just curious. Why do they give Alipurinol with Acalabrutinib?

[studebaker]

My doctor said to prevent gout and TLS. I can stop taking it next week.

Dana

[Canuck901 in reply to studebaker]

How’s acalabrutnib so far ? Any stomach issues ? What time. Of the day are you taking it ?

[studebaker in reply to Canuck901]

No problems with Acalabrutinib. Headache is gone 👍🏻

I am taking it at 9 am and 9 pm 12 hours apart.

How are you doing ?

🤗