Sores from calequence : Has anyone else gotten... - CLL Support

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Sores from calequence

gymbunny1 profile image
11 Replies

Has anyone else gotten sore from acalebrutinib ( calequence) they are round and feel like burns. What do you put on them ?

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gymbunny1 profile image
gymbunny1
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11 Replies
cajunjeff profile image
cajunjeff

I had rashes with ibrutnib, but not calquence. I would think just from what I have read, that the sores you describe could possibly come from calquence, but its not one of the more common side effects.

The cause of skin rashes and sores can be terribly hard to pinpoint. My dermatologist did a biopsy of my rash and even then, he could not determine what kind of rash it was or what caused it. My rash persisted after I stopped ibrutinib, so who knows.

The go to treatment for most rashes is some sort of steroid cream. I would see a dermatologist if I were you though, because anyone giving you treatment advice on here would only be guessing.

I know you had asked for advice on here before and I know how troublesome rashes and sores can be. Do you not want to see a dermatologist?

gymbunny1 profile image
gymbunny1 in reply to cajunjeff

I guess I need to go. Thought someone on here may have had a similar reaction and could tell me what help them

cajunjeff profile image
cajunjeff in reply to gymbunny1

I can tell you I had a really bad rash while on ibrutinib. Neither my cll doc or dermatologist could be sure if it was meds related or not. My dermatologist prescribed me a steroid cream which did help calm the rash down. I am not sure if your sores are a rash or not. Either way, and even with the very best advice on here, I would still see a dermatologist. I hope it clears up for you no matter what course you take.

gymbunny1 profile image
gymbunny1 in reply to cajunjeff

Going to see a dermatologist. I have round sores on my body from the drug. Not a rash. Just don't know what to treat them with

flyhigher profile image
flyhigher

I'm on Calquence. Probably not the same situation as you but I've been having six-month check ups by Dermatology following three SCC removals (believed to be triggered by my CLL). Each time I am encouraged to use moisturiser, especially on my arms which regularly have spontaneous bruising or 'spotting'. On the last check up I was given a thing called Doublebase Once for "24hr hydration" "a highly moisturising and protective gel".

My left arm (only) soon bubbled up with little blisters (1mm dia) which later burst and then the skin peeled as in sunburn. Because these were sample tubes, the writing was tiny-tiny and I was very much taken aback when I eventually was able to read that (a) it musn't be stored above 25C (b) the cream is a serious fire hazard 'clothing and bedding can catch fire easily'. Wow! That's not what you intuitively expect from a moisturiser! Since the ambient temperature at the time was 30C (south of England) I can't help but wonder that my shirt-sleeve-covered arm was cooked - burned - by the Doublebase Once rather than the sun itself.

I reverted to the other sample they gave me - ZeroAQS - and after a couple of days all has settled down although there's still some 'peeling' left. I obviously unwittingly travelled into dangerous territory with this Doublebase Once.

Kyler08 profile image
Kyler08

I am on Calquence but I have had rashes before taking medicine. The rash comes and goes in short periods of time. When it flares up I use Hydrocortisone and Clobetasol Propionate spray. Like one of your other post suggest I would go see a Dermatologist. I go to MSKCC and my CLL doctor was able to send me to a Dermatologist specialist that is in house there. I recommend depending were your CLL doctor is see if they can link you to specialist there. My Dermatologist said my rash is linked to my CLL. I seen a Dermatologist on the outside and did not get good feeling with them linking my rash to CLL or even understanding. I find having as many of my Doctors under one roof is a good thing for me. When something comes up or any testing is done they can all see it and it is easy for them to discuss strategies.

Good Luck.

JDG45 profile image
JDG45

I'm on acalabrutinib. From the small number of sores I've gotten my hemo suggested benadryl creme. Works nicely taking away the itch.

Katie-LMHC-Artist profile image
Katie-LMHC-Artist

Is the sore on your skin or in your mouth. In the beginning of taking Acalbrutinib I gargled with baking soda. Unsure if this helps. Take care!

Panz profile image
Panz

I have been on Calquence for almost 2 years and from the very start I have blood blisters in my mouth. They vary in size from the size of a corsage pin to the size of a marble..they only last a day or two and are not sore. Plus I have constant bruising but then I carry a low platelet level 70-100. Those bruises last for days and are from a quarter in size to the size of small orange. However, they are not painful just a bit ugly! ButCalquence has my labs looking almost normal so it is all good! I do receive IVIG every 4 weeks and iron infusions as needed. So life is pretty special!

All the very best to you!

Panz 💕🙏👍🙂☔️🌈☘️🌴

gymbunny1 profile image
gymbunny1 in reply to Panz

I have sores not a rash they are round and feel like burns

zsuzsiB profile image
zsuzsiB

I have been on Calquence for four years. Last summer I developed a rash which covered most of my lower arm. The dermatologist could not identify it, called it a subcutaneous bleeding. My GP prescribed steroid crème. Nothing helped. Until with my oncologist’s consent I went off Calquence for three weeks. The rash cleared up completely. I restarted Calquence and have been. fine, the rash did not return. A very unusual but apparently possible occurrence. zsuzsib

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