Brukinsa

[Silvafoxe]

The oncologist prescribed this for me. My WBC is high but he’s mostly concerned with my anemia plus one lymph node has swollen more and is sore. Has anybody been on this med ?

[AussieNeil Administrator]

Hi Sllvafoxe and welcome to our community, which I see you have just joined. Thank you for completing your bio, where you have shared that you became aware of your CLL diagnosis after you "got the Covid vaccines and booster. After that I got enlarged lymph nodes in the armpits that didn’t disappear. Later I noticed same in the groin area. After two ultrasounds.biopsies and PET scan it was confirmed that I have CLL."

While there are these 18 posts specifically about Zanubrutinib (Brukinsa) healthunlocked.com/cllsuppo... your proposed treatment is actually an inhibitor of B lymphocytes, including CLL cells, not "chemo" in the traditional sense. While Brukinsa has only recently been approved, it's a second generation BTKi (inhibitor) drug and this class of drugs revolutionised the treatment of CLL. Yes, you are right that "there’s side effects with all meds.", but the side effect profile with the second generation BTKis is significantly lower than what patients experienced with the first BTKi ibrutinib (Imbruvica), for which we now have just over a decade of patient experience. There was even a book written about ibrutinib and the first second generation drug, acalabrutinib (Calquence), "For Blood and Money". The side effects on BTKi treatment generally improve over time, with the notable exception of blood pressure, which can increase over time, so should be checked regularly.

With respect of how you became aware of your CLL, this is a chronic disease of which many of us are unaware prior to being diagnosed. One of the recognised side effects of vaccinations, including COVID-19, is a temporarily swollen armpit node. That's because the B lymphocytes learn about the disease in node germinal centres near the injection site (that is our armpit of our vaccination arm). A couple of weeks after a vaccination or booster, those B cells mature into circulating plasma cell antibody factories, providing us with protection from illness and the node should then return to its usual size.

A few of our members have also observed that they became aware of their CLL after a COVID-19 vaccination, so the big unanswered question is whether this was coincidental or causative. I know many members will be interested if you were aware of any indication that you might have had CLL developing prior to your first COVID-19 vaccination? For example, you've mentioned your anaemia, so do you have by chance, any earlier blood tests showing a drop in your haemoglobin?

I expect you'll do well on treatment and find that your painful node fairly quickly improves, but don't be surprised if your white blood cell (specifically your lymphocyte) count initially worsens, as that's where the Brukinsa banishes them from your swollen lymph nodes to eventually die.

You haven't said when you will be starting treatment, but be aware that not only does CLL compromise your immune system, but treatment can further reduce your immunity, so it's a good opportunity to now get up to date with vaccinations covered in this post. I'd strongly recommend the shingles (Shingrix) and pneumonia (Prevnar20) shots if you have the time (two weeks prior to starting treatment).

healthunlocked.com/cllsuppo...

Wishing you well on your treatment and don't hesitate to post again should you have any further questions.

Neil

[Silvafoxe in reply to AussieNeil]

Thank you for the information. I am supposed to start the med this week but doubt that I will because I haven’t received it yet.,I will ask the oncologist if I can wait until after I get the recommended shots. I won’t take them all together as it’s recommended that I not do that. I planned to get flu shot this week and maybe I could try and get ire bar at same time? I’ve had shingles years ago but if I start the med next week inwoukdnt have time to get the ahi grid until after the med is started. Another delay will be that Brukinsa has a reaction with the bp med I’m taking as it is a calcium channel blocker so I need to find out about that. I’ve been anemic since I was in my teens and oncology thinks CLL is making it worse. I’m learning quite a bit from this group.

[AussieNeil Administrator in reply to Silvafoxe]

You can generally somewhat defer the start of CLL treatment, but preferably not to the extent that you'll increase your likelihood of needing blood transfusions. See what your oncologist says. Likewise your BP med interaction. I've found hospital pharmacists to be great at suggesting changes in medication, which might involve switching to a different BP med or reducing your Brukinsa dose. At least that's easier to do than with the reasonably equivalent option of Calquence, which only comes in 100mg capsules/tablets taken twice per day. As I said, "The side effects on BTKi treatment generally improve over time, with the notable exception of blood pressure, which can increase over time, so should be checked regularly", so you have an extra reason to carefully monitor your blood pressure and the effectiveness of your BP medication control.

Combining vaccinations can generally be done (a shot in each arm), but it seems preferable to have them separately where possible. We don't have much clinical trial evidence specific to CLL, so tend to rely on studies including immunocompromised folk.

Given you've previously had shingles, you'll be at increased risk of it recurring while you are in treatment for your CLL, so I would expect that your oncologist has also prescribed an antiviral (valacyclovir or acyclovir). Some CLL specialists even prescribe it when their patients have had Shingrix vaccinations, because our response to vaccinations is so uncertain - but still worth doing for the potential benefit. You really don't want to risk another bout of shingles!

Neil

[Silvafoxe in reply to AussieNeil]

Let me tell you that the shingles were horrible. No the oncologist hasn’t prescribed an antiviral at all. I got shingles about 15 years ago. I hope to never get that again. I know the oncologist is mostly worried about my anemia but hopefully a two week delay won’t kill me. If he sgeees maybe I can get all shots in within a week and then start the med. I am going to have to get with primary care or my cardiologist to change me from the calcium channel Blocker. I will reach out to the oncologist or his assistant tomorrow. I figure I can get a couple shots like flu and prevnar at same time and then wait a few days and get shingle shots. I’m finding that all oncologists have different opinions and approaches. He recommended some shots but not the shingles shot. Glad you mentioned them.

[Silvafoxe in reply to AussieNeil]

Well the oncologist wants me to start taking the Brukinsa next week so I won’t have two weeks for getting the vaxs. I did get my flu shot because I get it annually. I previously had two pneumonia shots but also got prevnar20. I will get up to date withbirher shots later. Had I known while on watch and wait I would have gotten them. Thanks again for the info.

[DriedSeaweed]

been on it for 8 months. So far so good!

[Silvafoxe in reply to DriedSeaweed]

Thank you for sharing. Glad to hear that it’s working fine for you. I already have high blood pressure. Is it affecting your blood pressure?

[DriedSeaweed in reply to Silvafoxe]

So I can’t clearly answer that yet… My blood pressure has been higher since I’ve put weight on in the past few months. I’ve started exercising more recently so if my blood pressure stays high then it might be the drug.

My understanding is that high blood pressure could become an issue with long term use. So you could always switch to a new agent if you can get a couple to a few years out of zanu.

[Silvafoxe in reply to DriedSeaweed]

My understanding is that all of the BTK blockers have similar side effects. Brusinska is reported to have least side effects . I imagine if it works for me otherwise they’ll just increase my bp med. My bp has been running higher since I was diagnosed anyway. Thank you . Have a good day.

[gardener58]

I've been on it since 9/14/23 with no serious issues. I have arthritis and it seems like the pain is worse - of course it could just be "old fogey-itis". Stay strong.

[Silvafoxe]

Hi Gardener

I’ve been in it two weeks. Numbers immediately improved but I have noticed I’m having sone aches in my bones and didn’t have them before. Hope they’ll stop soon.

[MaxSmart]

I’ve been on it for a couple years. no side effects. No high blood pressure.

[Silvafoxe in reply to MaxSmart]

Hi MaxSmart

Glad to hear that you’ve had no side effects. My blood pressure is higher she lady’s but I’m supposed yo Monitor it and if it gets too high I have a smaller dose to take. I have gained weight and seems my allergies are more bothersome but I’ve always had allergy issues. I’m just thankful that there are meds for this cancer and praying that I can get several years of it doing its job on me. There’s new beaming to life for me. I thank Hod for each day he blesses me to see. Take care and thanks for replying.

[MaxSmart in reply to Silvafoxe]

Actually, I’ve had weight gain issues, but I’ll take it as part of the deal. I also get allergy issues more but I take Zyrtec and drink a lot of water and that makes it better

[Silvafoxe in reply to MaxSmart]

I take Zyrtec also but since I have GERD the two together keepS me coughing. I have rhinitis all year long and that’s not fun. I had these conditions already. I drink lots of water too but maybe not enough.

[MaxSmart in reply to Silvafoxe]

I hear you, we’re getting older. For my cough, I take fisherman‘s friend. Have you ever tried it? Best cough drops ever

[Silvafoxe in reply to MaxSmart]

I’ve heard of it but never tried it. I will try it. Thanks. Yes we are getting older. I’m 78 years old. I usually feel younger but no denying the mileage is there. Take care