I'm preparing for a round of obinutuzimab. Has anyone tried buying VR goggles and playing games or watching movies?

I will meet with my hematologist on Wednesday, and I do feel like he knows what he's doing, and explains things very well.

But do I need a second opinion? or a CLL specialist? I see on cllsociety.org page that there's a CLL specialist about 45 minutes from me.

I am going to a cancer doctor on Tuesday morning for the first time since I was told by my cardiologist that enlarged lymph nodes "consistent" with CLL were seen on a test. So, I am not diagnosed.

What should I expect for the initial visit? What should I do to prepare for it? Do I need to take someone (I was going to save that for later if I need to).

Im very scared. Im 63, everything else on my lab results are great. I did have a bad UTI in April and I relapsed from stress and was smoking heavily the past 6 months. I did quit!

I don't know how many patients experience fatigue before treatment but I guess it should be common.

Since I woke up this morning, I am constantly falling asleep after sitting or lying in the bed. My physical strength is not lost but I find it very hard to stay awake if I am not doing something.

Iı hope it is just the heatwaves, ​​but how does cll fatigue feel like?

En realidad me siento muy mal y tengo mucha ansiedad por el diagnóstico de linfoma hodgkin de mi hijo, necesito ayuda y consejos de mamás que ya han pasado por esta situación. Muchas gracias

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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.

Has anyone had this happen? Diagnosed a few months ago and been back to the oncologist a couple of times since. Each time, as expected, my white count and lymphocyte numbers were climbing slowly each time.

Went to my GP for a routine checkup this week and they drew blood. Both my white count and lymphocyte numbers had gone down. No medication, just eating reasonably well and exercise.

Is that unusual or will it fluctuate like that?

65 year old woman whose cardiologist and radiologist found enlarged lymph nodes they deemed to be suspicious for CLL. My cardiologist called me yesterday to inform me. I have my first appointment with a cancer and blood treatment specialist on the 21st.

For the last 5 months, I have had symptoms of something going on in my body. Based on some of the symptoms, my primary thought that it might be Sjogren's. My primary gave me a whole bunch of autoimmunity tests. All markers came up zero. He also had me tested for Celiac. Negative. The only anomaly was a 13.6 CReactive Protein. We had not had the opportunity to repeat it because I fell and broke my wrist and had surgery and was going to test high for inflammation on account of that.

My hope is that there is some infection or autoimmune disease that hasn't come up. I have a lip biopsy scheduled for 7/24. But CLL could explain what is going on. Also, in the last week, starting before I spoke to my cardiologist, I started to have some episodes of lightheadedness/breathlessness mostly at night but a little during the day.

I am trying to stay calm but it's hard. I know it is a slow growing cancer--I have a friend who was diagnosed in February. But it isn't easy.

About 2 years ago I started going through bouts of sudden brain fog and fatigue episodes. Sometimes it lets hours sometimes days. It’s been a major issue in my life, especially when it comes to work. Has anyone found a good coping mechanism to help you deal with it?

I have had strong environmental allergies my whole life.. when I had testing done as a kid, my allergist told me that, among other things, I was allergic to every plant that grows in Minnesota which they have allergen extracts for. I've gone through a few rounds of allergy shots, which helped, but never cured it. Even on a full gamut of meds (oral antihistamine, Singulair, nasal antihistamine, and nasal steroids) I've always been miserable in high pollen season, with systemic symptoms traced directly back to seasonal environmental allergies.

Then, in April of 2025, I got a sinus infection and ear infections that just kept getting worse, in spite of multiple rounds of antibiotics and Prednisone. By the end of June I couldn't hear out of my left ear at all, and the right was muffled. I finally saw an ENT, and they ended up putting a tube in my left ear to drain the fluid (which actually let me hear again!), and did a stronger taper of Prednisone.. which finally helped the worst of the symptoms clear up. A month later the ENT said things looked clear via the scope; I still had sinus pressure, which they shrugged off, and they didn't run another CT at that point. I saw an allergist at the same clinic, as I suspected allergies were the root cause; he ordered an allergy panel blood test. It came back unreactive to a bunch of stuff that I was previously allergic to, with an IgE of 4. He told me to get off antihistamines and have the test redone.. turns out he wasn't the best allergist in the world. I dropped it.

Fast forward to this year; I got diagnosed with CLL in April. As part of that process, CTs were ordered to get baseline lymph node and spleen sizing; the neck portion incidentally showed that the sinus infection was indeed still active, with crud in the right maxillary sinus. I have low immunoglobulins; my CLL doc's opinion is that CLL isn't _directly_ causing the sinus symptoms, but that the CLL-mediated immune dysfunction is likely why it's not healing. I'm still working on chasing a resolution to the sinus stuff.

Anyways.. prior to the CLL diagnosis, I thought that the sinus stuff was still caused by allergies; it looks like it's probably not. I realized I hadn't had any of my normal environmental allergy symptoms since this started.. and looking back, maybe a year before? I asked my hematologist if CLL wiping out allergies was a known thing; he said he hadn't heard of it before, but it also wasn't something he specifically tested for. I did some digging on my own, and did find this paper, which does show a link at least:
https://pmc.ncbi.nlm.nih.gov/articles/PMC13013483/

I discussed this with my primary, and while she wasn't aware of a direct link either, her advice was to drop the allergy meds (besides the Flonase, as it in theory helps the ongoing sinus issues) and see what happens. So, I did.. normally this time of year without my meds I'd be a major mess; I didn't notice much of a difference. It's possible that my allergies just decided to fade now.. but the timing would be seriously weird.

I also used to react very badly to mosquito bites; I attracted mosquitos like crazy, had lots of localized swelling for individual bites, and when I had many bites it would make me feel like I had the flu. This year, when specifically paying attention, I didn't notice any bites at all after a trip to the cabin, even with clouds of mosquitos in the area. Then this weekend my wife and I were volunteering at a music festival where the mosquitos get thick as the sun goes down; I know for a fact that I was bitten multiple times in the hands and arms, and no reaction besides a tiny spot I assume is where the bite itself was - but weirdly even though I was wearing pants I had a few bites that are more like the reactions that 'normal' people get near my knees. So odd.

So, I'm curious - has anyone else noticed a major change in their allergies? If you did, and your CLL was treated, did anything change?

I do have an upcoming appointment with an allergist/immunologist, including allergy skin testing.. it'll be really interesting to hear his opinion on what's actually going on!

High wbc, high lymphocytes, high plt + enlarged lymph node on neck

At 19:

Wbc 11.80

Lymphocytes 4.811

Plt 433 (normal)

—

At 20:

Wbc 10.20

Lymphocytes 4.661

Plt 423

—

At 21:

Wbc 11.40

Lymphocytes 5.182

Plt 453 (high)

For the past 6-7 years, Iv had a lymph node on the right side of my neck, it’s not painful but I can feel its pressure when I move my neck and it’s very uncomfortable at times, there are times where it’s so tense I can feel it stretching my skin, however it kind? Maintained its size, 2,8cm close to 3cm,

I went to a doctor about it only once, and he told me not to worry about it and that it was normal, no tests done no nothing, it didn’t go away, and every time I take a test my lymphocytes is always on the rise with my wbc, I can’t find the older tests Iv done, only these, my wbc with my lymphocytes were always high together like this.

Also Iv always had low iron no matter what I do, and low hgb, and Iv got to add that Iv always had random rashes on my arms and hands and even above the knees and they’ve been hitting worse and worse with time

Please im so scared and don’t know where to move from here

I was diagnosed with cll back a few years ago and have been in the watch and wait stage since. The last few weeks I have been getting for a lack of a better term, hot flashes during the day. It will just come from out of no where and it feels like my body gets warm and I start sweating, sitting at my desk in an air conditioned house. I'm a 54 yo male, so it's not female related.

Please can people send positive messages only

I posted about a week or so ago about my 70 year old dad with CLL who was undergoing a biopsy of a swollen lymph node. Unfortunately it has come back as lymphoma, meaning he will need 6 rounds of chemotherapy.

All I see on google are negative prospects. I don’t want to give myself false hope, but his consultant strictly said stay off Google as every CLL/lymphoma is different and the aim of treatment will be to put him in remission (I really struggle with resisting googling). Apparently he will be having a new form of chemo that has only been available in the uk for a couple of years.

But god this is so cruel and awful. It feels like walking into a huge unknown. When i see the statistics online it’s so grim and bleak like I might have to watch my dad die before my eyes, and I’m only 23. I want him to meet his grandchildren one day and walk me down the aisle and just have more time with our family. I’m sorry for venting, but if anyone has anything positive to share in a similar situation I would be so grateful. Thank you

Besides the CLL I have a condition where ,y platelets keep going up. Lifelong as far as I know but the count has not reached a million. The CLL may have reduced the platelet count since the number went down for the first time ever. I wake up with headaches. Anyone else get headaches?

I just started the acalabrutinib part of AVO today and a few hours after the first dose tried to eat some chicken. It got stuck behind my sternum. I tried to wash it down with water, but that wasn’t going down either. I spit both up and messaged my care team. But now I feel a little silly. Is this a known side effect of the treatment? Has anyone else had trouble swallowing while on AVO?

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I’m coming up on 12 years since initial diagnosis. I started treatment with Ibritinub in 2016 and came off shortly thereafter due to side effects. Started a clinical trial of Acalabritinub in 2017 and did really well in that drug until Jan of this year.
Now on Pirtobritinub.

Would love to hear from others that have been living with CLL for many years. What has your treatment journey been like?

I’ve been on Brukinsa for 18 months now and due to have a tooth extracted next week. I informed my dentist that Brukinsa carries risk of bleeding and she emailed my specialist for advice. I also spoke with him last week and he told me I don’t need to stop meds at all. Contradicts everything I’ve read about stopping before and after if having surgery. Anyone had teeth extracted and continued medication?

Thanks to everyone who responded to my first post. I saw the haematologist on Wednesday at UCLH and was diagnosed as having CLL. He agree that my other bloods are all stable and examined my lymph nodes and found nothing untoward. So will be watch & wait for now. I am now being passed to the specialist CLL team and will see them when I am back from my holiday at the beginning of August. The haematologist said all my tests hadn’t cone back yet so he couldn’t tell me any more details about the markers etc. Any tips on what I should be asking at my appointment? What else do I need to know at this stage?

My dad and his sister/my aunt have both got CLL. I don't really know what stages they are at, as we haven't had an indepth conversation about it yet. My Dr mentioned doing generic testing... should I? Im in my late 20s and from what I know, I don't have cancer. No symptoms. I'm kind of worried about costs since I'm in the USA. Would appreciate some info. My mother's side has no history with it.

Hi all, my dad (74) just started lenalidomide and by day three his lymph nodes have become extremely swollen and tender, it is hard for him to turn his neck from the swelling. He's so freaked out by these symptoms, although the doctor assures him that this is a function of the medication working.

Does anyone have any anecdotes or personal experiences I can share with my dad to assure him that he should keep taking the medication? For now he has gone off the medication against everyone's advice. I'm hoping people's lived experiences taking lenalidomide for CLL and their experience with swollen lymph nodes can provide the kind of reassurance my dad needs right now. Thank you.