Acalabrutinib and Skin Cancers: I began taking... - CLL Support

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Acalabrutinib and Skin Cancers

spanish36 profile image
18 Replies

I began taking Acalabrutinib three years ago as a participant in a clinical trial. I have enjoyed excellent success.

However, recently I began breaking out in skin cancer lesions on various parts of the body.

Particularly on my legs, ankles and feet. I have been prone to sun damaged skin converting to both basal cell and sqamous skin cancers for several years and have had many surgically excised.

But until the past six months never in the quantity and speed at which they are now appearing. Current count of suspected skin cancer lesions is 23.

Three more lesions have since appeared on my front scalp.

Currently treating these with efudix before further biopsies taken in a month or so with surgery to follow findings of positive results.

I am aware that Acalabrutinib might be resonsible for encouraging skin cancers to develop?

I would appreciate it if others taking Acalabrutinib who are also running into rampant appearance of skin cancer lesions might let me know their situation please?

Thankyou.

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spanish36
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18 Replies
bennevisplace profile image
bennevisplace

Hi. Can I suggest that you make your post visible only to this community? That way you should get more responses.

spanish36 profile image
spanish36 in reply tobennevisplace

Oops...I thought I WAS only posting to the CLL community. Thanks.

cajunjeff profile image
cajunjeff

I have been on acalabrutinib about two years now with no skin cancer problem. I see a dermatologist for screening at least once a year.

Your post made me curious so I looked up info on acalabrutinib and the skin cancer warning it carries, reportedly about a 6% risk. That seems a substantial risk to me.

“New cancers, including skin cancer, have happened in people during treatment with BTK (Bruton tyrosine kinase) inhibitors such as CALQUENCE. During clinical trials, skin cancer was reported in 6% of 1029 patients exposed to CALQUENCE. It’s always important to use sun protection and follow sun safety guidelines when outside in sunlight. Your healthcare provider or dermatologist will check you for skin cancer during treatment with CALQUENCE, and can help answer any further questions you may have”.

cllsupport.calquence.com/hc...

But was it the acalabrutinib or the cll or both that caused the skin cancers? I dont think they know.

This study suggests people with cll carry as much as a 20% risk of getting skin cancer:

Results: Of the total cohort of 377 individuals with CLL, 251 (67%) were male. Median age at diagnosis of CLL was 65 years (range 36 - 93 years of age). Median follow-up from the time of CLL diagnosis was 6.5 years (range 0.27 - 30.98). Of these, 80 individuals (21.2%) developed at least one skin cancer after their diagnosis of CLL, with an age-adjusted incidence of 16.96/1000 patient years (95% CI 12.5 - 23). Among the 297 who did not develop skin cancer post-CLL diagnosis, 13 individuals who had documented skin cancer pre-CLL diagnosis only, are included in the non-skin cancer group (Figure 1).

ashpublications.org/blood/a...

So I dont see how anyone can say with certainty your skin cancers were made worse due to acalabrutinib, your cll, or your natural genetics. Maybe there is a way to know, it’s a god question for your doctor for sure.

Since I assume the treatment for your skin cancer will be the same, no matter the cause, one might argue the causes makes no difference. But the cause could make a difference if your doctor though getting off acalabrutinib might help. Along with that solution, however, comes the problem of getting on a new cll med which likely carries some skin cancer risk too. Since most all Cll treatments are immunosuppressive, I would guess most all carry some risk of skin cancer.

If I were you I might consider letting both your dermatologist and your Cll doctor know of your concerns. I would then ask them if it would be at all beneficial for then to consult with each other to see if they can agree on whether your acalabrutinib should be stopped or paused or whatever other options you might have.

It’s a good question you ask, but since old age, cll and Cll drugs can all elevate risk for skin cancer, it might be a hard question to answer. Of the 6% who got skin cancer after acalabrutinib, how do they know it wasnt the cll that caused it? Good luck, I hope you can report back what solution your doctor suggests.

spanish36 profile image
spanish36 in reply tocajunjeff

Thanks. Yes I am fully aware of all that information. I had been advised that this treatment might increase the incidence of skin cancers developing.

The reason for my post was to find out if others on this treatment are experiencing similar large numbers of tumours developing after two to three years on treatment..

Many thanks for your input.

Vizilo profile image
Vizilo

I suspect that the skin cancer is not a result of the treatment but a result of the cll itself. I have probably had at least a dozen cancerous lesions removed from my face, hands, arms, legs and even my lips. They all had one thing in common, occurring in areas exposed to decades of sun. I was not a big fan of sun screen until after the damage had been done. The first lesions were removed a couple of years before I started on Acalabrutinib so it is likely not the culprit

But have positive thoughts!! At my last quarterly visit to my dermatologist, she couldn’t find one cancerous spot or even a suspicious one. According to her, my scalp which had produced numerous cancerous spots (removed) and suspicious spots (frozen off), was now clean as a baby’s head.

spanish36 profile image
spanish36 in reply toVizilo

Thanks.

spanish36 profile image
spanish36 in reply toVizilo

Thanks. My various CLL markers returned close to normal levels 2 years after my treatment began with Acalabrutinib for which I am eternally grateful.

I've been on treatment now for 3 1/2 years.

For the past year my CLL markers have remained at almost normal levels. I continue to take Acalabrutinib.

These masses of lesions only began appearing recently.

I have a review coming up in two weeks time with my clinical trial doctors and the matter of my new, numerous lesions will be investigated.

My only reason for raising the topic is to find out if other people taking Acalabrutinib for 2 to 3 years, or longer, in similar circumstances, are undergoing a similar experience.

It is a complex subject. No easy answers.

Thanks for your input.

LeoPa profile image
LeoPa

Do you have to wait that long for biopsies and surgeries? Can't they burn them off right away? Take action first ask questions later.

spanish36 profile image
spanish36 in reply toLeoPa

Thanks. "Burning" not an option with this lot. Too large. I have had numerous small lesions "burnt" off.

Brucex100 profile image
Brucex100 in reply tospanish36

Hi - I have been on ACAL for 2 years and I was getting cancers growing quickly

I am now on Plasma IVIG to boost my immune system and the rate of lesions has reduced a lot - I get any burnt of and see my Dr every month for this - ask your specialist about getting IVIG - my health fund pays for it here in Australia

Teemed profile image
Teemed

I had squamous and basil prior to dx of CLL and since starting Calquence 2 years ago have actually now had less precancerous spots to burn off

I’m in the sun a lot as I love the outdoors, hunting and fishing etc. I did go to long sleeves, pants and hats plus sunscreen and I go 3 times a year to the derm to get inspect ed. She says 2 x is enough to go to get screened but my thought is why not as it’s not a big deal to get them burned off before it’s a problem

spanish36 profile image
spanish36 in reply toTeemed

Thanks

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

I had two skin cancer surgeries in 2011 while in wait and watch. I’ve been on Acalabrutinib for 13 months and just had a lesion removed from my nose. My doctors have said that skin cancer can take years to show up. The cancer is due to our previous exposure to the sun. I’ve also been told because of our immune systems we have to take all the protection we can to help protect ourselves. I’m not a doctor but there must be a connection between our immune systems and skin cancer showing up from all the past sun exposure we had as kids. I’m sorry that you’ve had to deal with so many surgeries. I see my dermatologist twice a year. She has frozen a few spots during the past few years. I hope for the best for you with this. I wear clothing that has sun protection in it. One site is Coolibar to look at. I just ordered sleeves from Farmers Defense to wear in the sun if I have a short sleeve top on. Wear a hat and cover what you can while in the sun. It also may be partly genetic. I have two sisters that are twins that have had skin cancer and my father, who lived in AZ for over 40 years had bouts of skin cancer. I’m lucky to live in the northeast and I’m actually happy when we have cloudy days!!!😂 take care!🦋

bennevisplace profile image
bennevisplace

Hi. Think of it in terms of risk factors and where you stand in relation to each. I can't quantify them for you.

Cumulative UV (sun) exposure, especially from childhood through to 30s/ 40s.

Fair or freckly skin.

Chronic immune deficiency e.g. CLL.

Immunosuppressive medication e.g. FCR, anti CD20, BTKi.

I have the full house. CLL Dx 2006, melanoma 2010, numerous BCCs, a few SCCs. Tx 2019-20, they keep coming.

My wife and I are invited on holiday in Zanzibar this summer. I think not.

Keep on top of it and skin cancer can be managed. All the best.

spanish36 profile image
spanish36 in reply tobennevisplace

Thanks

skipro profile image
skipro

hi

That’s a lot

I’ve had a melanoma and 13 sq cell Ca’s and a handful of AK and Basal cell Ca since starting FCR in 2018. The further out from that treatment I’ve calm, the less frequent the incidence.

I have not had an increase following relapse and starting V +0 .

After the first I saw treatment from a skin cancer specialist. I have since completely covered up with a zinc, plus titanium, sunscreen, called blue lizard, wear special, UV protection, hats, long sleeve, shirts, gloves, long pants and socks, etc., and stay out of the sun during peak sun hours.

My skin cancer nicotinamide, that is purchased over-the-counter 500 mg twice a day. Studies show that this decreases the incidence of skin cancers by 33%.

My doctor also has me use something. Cope called five fluorouracil a chemotherapy cream periodically over areas of suspicion. It apparently kills any pre-cancers.

One theory as to why is the T cell function is damaged by either the CLL itself, or treatment. The specific cell line is called a T surveillance cell or another term is NTK killer cells. Mine were low during and for about two years after my FCR treatment.

Ultimately, no one knows for sure, but I also have a predisposition, because I have fair skin, freckles, and red hair

god bless you and good luck.

Skipro.

spanish36 profile image
spanish36 in reply toskipro

Thanks

thompsonellen2 profile image
thompsonellen2

No guidance to offer. Just wanted to say I'm sorry you are going through this. I burn so easily I've always avoided the sun like the plague because I got burned like crazy when I was a kid.

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