Hello....I have developed a horrible rash on my face, it loos like I was laying out in the sun for days.
Went to the dermatologist and they said I had Rosacea. I have never had Rosacea, I believe it is a side effect from Calquence. I am still coughing and losing my voice for over two months. I am scheduled for a CT scan on my chest. Thanks
So sorry helenolton, these side effects come out of no where. It's the hardest thing about taking these meds. One symptom starts the next one comes after. I've noticed doctors don't seem to think some of these symtoms are related to the meds.
My two cents is that the BTKs don’t cause the skin problems but make them much worse. I’ve had skin issues since I was diagnosed with CLL and they got worse as my disease progressed.
I am hopeful that once I’ve been on the BTK medication for awhile and my lymphocyte numbers go down, these symptoms may subside.
Loved your reply, CycleWonder🙂.
That's my hope.
I like to be hopeful!
Oh I definately think BTKi's can indeed be the direct cause of various side effects. BTK is found throughout the body, it's not specific to the CLL only. This phenomemon is referred to "off target" effects of the BTKi's. Much like Venclexta is used because CLL cells tend to have many many more BCL2 receptors than "normal" cells. And of course, if one already has a problem with, say, skin, then the effect may be aggravated even more by the med.
Many peoples "normal" cells do eventually adjust to there being a BTKi on board, and the side effects decrease or goes away, while the med preferentially goes for the CLL. Acalabrutinib induction headaches are the first that come to mind. And even if one drug doesn't work well without side effects, another might. I had problems on ibrutinib, but not really on CG-806. Since the CG-806 was the "dose escalation" part of that trial, and I wasn't anywhere near the maximum dose, it eventually stopped working for me. But if it comes to market at a higher dose, I might try it again. I would try pirtobrutinib. My consideration at this point tends to be "what can I get for free/reduced cost that also affects the del17p subset?" As long as my other organs work well and my other cell lines are OK, I will continue to do trials. Not everyone qualifies for clinical trials, and I figure if I can't actually do what I trained to do, I can contribute to medicine in this way. It's one of the thoughts that has allowed me to not be so distressed at this diagnosis. "Someone" has to be in these trials, and if God made it so that I am able to contribute because my traditionally awful disease is stable enough to let be a guniea pig, then that's what I need to do.
The skin conditions I am experiencing now from being on Pirtobrutinib already existed when I started but being on the BTK made them worse. For most of my life, my skin and I co-existed but I didn’t spend much time worrying about it. I put on sun screen when outside and in the winter would use cream for dry skin on my hands and feet.
CLL changed all that. I have to be very careful not to get rashes. But in my case, I think it is linked to the lymphocytes in my blood. At least, there seems to be a correlation between my ALC and my skin issues.
As far as side effects go, these are pretty mild and I’ve found products and actions I can take to minimize the effect on my life. And it’s nice to be hopeful about life again.
The various rashes and such that are immune system regulated, can be affected by CLL as well as the various drugs, I am sure. If you are having skin problems that fluctuate with CLL activity and infiltration, it's totally understandable IMO.
Really did make me fume when an ex hem-onc tried to convince me my GI and skin problems could not possibly be related to the drug. Wait, what? It's right there, in the package insert....
Long ago when I was young, my mom had me play with a friend who had the measles. This was recommended at the time to have measles while still young. I didn’t break out in the outside. Rather, the measles affected my throat, stomach and intestines. I was a sick little 3rd grader. I was out of school for a month and lost 50% of my weight!
Just because side effects don’t happen for everyone doesn’t mean it’s not happening for you! My measles presentation was very unusual but still happened.
Sadly, this rationale is used for the "Covid parties."
And for parents who don’t want their kids vaccinated for childhood diseases and don’t have a healthy respect for these same diseases.
I'm sorry to hear that you were so ill with measles. Unfortunately, you had plenty of company, as measles has a reputation for causing serious illness in some people, such as pneumonia and encephalitis, sometimes causing permanent damage
cdc.gov/measles/symptoms/co...
Measles also massively damages the immune system newscientist.com/article/22...
We are learning that COVID-19 can also cause serious long term impacts on the health of some people
healthline.com/health/covid...
bhf.org.uk/informationsuppo...
Neil
I have had bouts of rosacea triggered by two things only :
1) Hormonal changes/hot flashes at 51
2) Gut inflammation following antibiotics, this I resolved by discontinuing the antibiotic and following up with a careful diet that included a lot of bone broth. Bone broth is anti-inflammatory and rebuilds the gut. Pharmaceuticals can cause gut inflammation, microbiome imbalances and in some cases lesions. That said, calquence did not seem to bother my gut (but Obinituzinab did).
This doesn't mean that these are causing your rash, but this was the case for me. The etiology of rashes can be puzzling.
Hello, I was curious, do you use any probiotics (before or after antibiotics)? Gut health is getting so much attention these days. They say all diseases start in the gut…
I used probiotics mostly after the antibiotics, also throughout my entire AVO treatment. They are a regular part of my diet now, I make my own sauerkraut, beet kvass and yogurt.
Me, too, I have had skin issues since taking Calquence. I have a red face too and my whole body is itchy. Two weeks ago I had a lump under my skin on face cheek, red and hot, swollen. Went to dermatologist. Said it was a skin infection. Gave me antibiotic cream to use. Never had this before, although my skin was changing before the meds, but like CycleWonder said, I think the meds have made my skin worse. I have been on Calquence since September. Like you I hope as my numbers improve that my skin issues do as well. Could be worse I suppose. Just worry that some other side effects might rear their ugly heads . I was hoping that after a few months whatever side effects we had initially would disappear and no others would be forthcoming.
Hi . I have Rosacea and I am not on treatment. Not sure if having CLL makes it more susceptible to getting it but it is fairly common I believe. I have just been to the Dr's and he prescribed Metrosa gel which is the treatment for Rosacea. Rub on skin twice a day for four weeks. Hopping it works for me.
If you are having skin flora imbalance issues such that Metrosa/metronidazole is being prescribed, I wonder if a simpler "anti/bacterial anti/fungal" like coconut oil or kukui nut oil may help.
Have you assessed your diet for how many processed foods, or how many allergens it containe? Do you use stuff like a perfumed laundry detergent, or any kind of fabric softener, even the sheet dyer things? And unless you have a construction or other really dirty job, or play sports putside where you get muddy, I find that half the recommended amount of laundry soap, shampoo, etc. is needed. Does your body soap contain any kind of "smell"?
Also, if your area has heavily chlorinated water, a shower head filter that removes it plus other trace ions may help. I remember I got a rash on my legs & butt one year from getting out of a jacuzzi and not immediately rinsing off. I put my towel around my shoulder area, and just dried off "naturally" without rinsing. The chlorine and whatever else in that pool dried on my skin, and my skin did Not like it.
Hi Sofia. To be honest I haven't tried anything else as I didn't think the marks on my face was much more than getting older. The Dr noticed that I had Rosacea when seeing him for something else. I will continue with the med he gave me and hope it works. But thank you so much for the info you gave me. Kind regards Steve.
I never had any skin reaction to the Calquence, but it definitely gave me lots of big headaches. I took it for 3 months and it brought my numbers down considerably
What are you taking now? I am curious about the drug progressions🤔 I started with Zanubrutinib & after 1 week off, I am 3 days into Acalabrutinib (100mg/24hrs) now. I don’t feel anything drastic, finger tingling, joint pains, feet pain & the ‘you going down’ fatigue. I pray this one works for a very long time🙏🏾🙏🏾🙏🏾
Two Months on Acalabrutinib - Still Underwhelming
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Bruised and swollen arm from Calquence.
