Hi everyone,

My dad (53) has Rai stage III CLL and has been on acalabrutinib 100 mg for ~1.5 months. His oncologist says his CLL response is good.

The main issue is a persistent, fairly intense headache that has been present almost daily since starting the medication. His oncologist knows about it and suggested a painkiller SOS.

One thing we noticed: he missed acalabrutinib for one day, and he says the headache wasn't there that day. It returned after restarting, although we're obviously not sure if that's connected.

His BP has generally been normal (around 120–130/80), sometimes lower than his usual, and he feels the headache may be worse when his BP is lower or when he has indigestion.

For anyone who has taken acalabrutinib:

• Did you have persistent headaches for the first 1–2 months?
• Did they eventually improve?
• Did yours seem related to taking the medication?

Not looking for a diagnosis—just trying to understand whether this kind of persistent headache is something others experienced. Thanks ❤️

Hi everyone,

My dad (53) has Rai stage III CLL and has been on acalabrutinib 100 mg for ~1.5 months. His oncologist says his CLL response is good.

The main issue is a persistent, fairly intense headache that has been present almost daily since starting the medication. His oncologist knows about it and suggested a painkiller SOS.

One thing we noticed: he missed acalabrutinib for one day, and he says the headache wasn't there that day. It returned after restarting, although we're obviously not sure if that's connected.

His BP has generally been normal (around 120–130/80), sometimes lower than his usual, and he feels the headache may be worse when his BP is lower or when he has indigestion.

For anyone who has taken acalabrutinib:

• Did you have persistent headaches for the first 1–2 months?
• Did they eventually improve?
• Did yours seem related to taking the medication?

Not looking for a diagnosis—just trying to understand whether this kind of persistent headache is something others experienced. Thanks ❤️

Hi everyone,

My dad (53) has Rai stage III CLL and has been on acalabrutinib 100 mg for ~1.5 months. His oncologist says his CLL response is good.

The main issue is a persistent, fairly intense headache that has been present almost daily since starting the medication. His oncologist knows about it and suggested a painkiller SOS.

One thing we noticed: he missed acalabrutinib for one day, and he says the headache wasn't there that day. It returned after restarting, although we're obviously not sure if that's connected.

His BP has generally been normal (around 120–130/80), sometimes lower than his usual, and he feels the headache may be worse when his BP is lower or when he has indigestion.

For anyone who has taken acalabrutinib:

• Did you have persistent headaches for the first 1–2 months?
• Did they eventually improve?
• Did yours seem related to taking the medication?

Not looking for a diagnosis—just trying to understand whether this kind of persistent headache is something others experienced. Thanks ❤️

My dad (53) has Rai stage III CLL and started acalabrutinib 100 mg about a month ago.

His TLC before treatment was around 35.6, and his latest CBC shows:

TLC: 121.1

Absolute lymphocytes: 113.4

Hemoglobin: 10.9

Platelets: 162 (previously 111)

Absolute neutrophils: 6.54

He's otherwise doing okay. His earlier LDH was normal.

I know acalabrutinib can cause temporary lymphocytosis early in treatment, but seeing the TLC go from 35 → 121 has really scared me.

For anyone who's been through this: Did your lymphocyte count rise this dramatically during the first month of acalabrutinib? How did your doctor interpret it, and when did it start coming down?

We'll obviously discuss it with his hematologist, but I'd really appreciate hearing from people who've experienced something similar.

Hi everyone,

My dad (53) has Rai stage III CLL and started acalabrutinib 100 mg about a month ago.

His TLC before treatment was around 35.6, and his latest CBC shows:

TLC: 121.1

Absolute lymphocytes: 113.4

Hemoglobin: 10.9

Platelets: 162 (previously 111)

Absolute neutrophils: 6.54

He's otherwise doing okay. His earlier LDH was normal.

I know acalabrutinib can cause temporary lymphocytosis early in treatment, but seeing the TLC go from 35 → 121 has really scared me.

For anyone who's been through this: Did your lymphocyte count rise this dramatically during the first month of acalabrutinib? How did your doctor interpret it, and when did it start coming down?

Hi everyone,

I'm posting about my 53-year-old father, who was recently diagnosed with CLL Rai stage III. He started acalabrutinib 15 days ago, and we're still adjusting to everything. This is all very new for our family.

Since starting treatment, he's had:

• A constant headache (almost every day since starting)
• Indigestion
• Moderate fatigue
• Some knee pain

Today we weighed him for the first time in about 2–3 weeks and noticed he's lost around 2 kg. Before today, we had been monitoring his weight regularly after diagnosis but hadn't checked it since he started the medication.

I'm wondering:

1. Has anyone experienced weight loss during the first few weeks of acalabrutinib? Could it be from the medication itself or from eating less due to the side effects?
2. Did the headaches eventually improve? If so, how long did they last?
3. Did anyone find anything that helped with the indigestion or appetite?
4. When did you begin to feel that the treatment was working? I know blood tests and follow-up appointments are the main way to assess response, but I'd really appreciate hearing about others' experiences during the early weeks.

We will definitely be discussing these symptoms with his hematologist. I'm mainly looking to hear from people who have gone through the initial weeks of acalabrutinib treatment, as it's been a worrying adjustment for us.

Thank you so much

Hi everyone,

I'm posting about my father (54 age) , who was recently diagnosed with CLL Rai stage III. He started acalabrutinib 15 days ago, and we're still adjusting to everything. This is all very new for our family.

Since starting treatment, he's had:

• A constant headache (it's been there almost every day)
• Indigestion
• Moderate fatigue
• Some knee pain (this seems less concerning than the headache)

Today we weighed him for the first time in about 2–3 weeks and noticed he's lost around 2 kg. Before today, we had been monitoring his weight regularly after diagnosis but hadn't checked it since he started the medication.

I'm wondering:

1. Has anyone experienced weight loss in the first few weeks of acalabrutinib? Was it due to eating less because of side effects, or can the medication itself contribute?
2. Did the headaches eventually improve, and if so, how long did they last?
3. Did anyone find anything that helped with the indigestion or appetite?
4. At what point did you start feeling that the medication was "working"? I know blood tests are the main way to assess this, but I'm curious about others' experiences.

I know everyone responds differently, and we will definitely discuss these symptoms with his hematologist. I'm mainly looking to hear from people who have been through the early weeks of treatment, as it's been a bit worrying for us.

Thank you so much.

Hi everyone,

I'm posting about my father, who was recently diagnosed with CLL Rai stage III. He started acalabrutinib 15 days ago, and we're still adjusting to everything. This is all very new for our family.

Since starting treatment, he's had:

A constant headache (it's been there almost every day)
Indigestion
Moderate fatigue
Some knee pain (this seems less concerning than the headache)

Today we weighed him for the first time in about 2–3 weeks and noticed he's lost around 1.5 kg. Before today, we had been monitoring his weight regularly after diagnosis but hadn't checked it since he started the medication.

I'm wondering:

1. Has anyone experienced weight loss in the first few weeks of acalabrutinib? Was it due to eating less because of side effects, or can the medication itself contribute?
2. Did the headaches eventually improve, and if so, how long did they last?
3. Did anyone find anything that helped with the indigestion or appetite?
4. At what point did you start feeling that the medication was "working"? I know blood tests are the main way to assess this, but I'm curious about others' experiences.

I know everyone responds differently, and we will definitely discuss these symptoms with his hematologist. I'm mainly looking to hear from people who have been through the early weeks of treatment, as it's been a bit worrying for us.

Thank you so much.

Hi everyone.

My dad was recently diagnosed with Rai Stage III CLL, and I'm having a really hard time processing it. The last few days have felt unreal, and my anxiety has been through the roof.

I know no one can predict how an individual case will go, and I'm not looking for a prognosis. I think I just need to hear from people who've been through this themselves.

If you have CLL or cared for someone with it, what were those first few weeks after diagnosis like? Did the initial fear get any easier to manage? Is there anything you wish you or your family had known early on?

I feel really overwhelmed and pretty alone right now, so hearing your experiences would honestly mean a lot.

I am from India btw.

Thank you. ❤️

My father has recently been diagnosed with Rai Stage III CLL. Our whole family is in shock. I'm his daughter and I'm struggling to process everything. I cannot stop crying and Its like very crucial for me to study rn but I just can't with everything going on. If you've had Stage III or cared for someone with it, what was the first year like? What do you wish your family had known?

My father has recently been diagnosed with Rai Stage III CLL. Our whole family is in shock. I'm his daughter and I'm struggling to process everything. I cannot stop crying and Its like very crucial for me to study rn but I just can't with everything going on. If you've had Stage III or cared for someone with it, what was the first year like? What do you wish your family had known?

Edit: I am really sorry I forgot to mention but I am from India(idk if this helps but seeing the replies I thought to provide this info)

My father has recently been diagnosed with Rai Stage III CLL. Our whole family is in shock. I'm his daughter and I'm struggling to process everything. I cannot stop crying and Its like very crucial for me to study rn but I just can't with everything going on. If you've had Stage III or cared for someone with it, what was the first year like? What do you wish your family had known?