Hi, I’m seeing my consultant tomorrow to choose between acalabrutinib and V and O as treatment options, which he suggests are likely to be equally effective. Other things being equal I would go for acalabrutinib as the gentler treatment option. My concern though is that I’m am a very outdoors person and want to live whatever years I have left enjoying the outdoors. A listed side effect of acalabrutinib is increased sun sensitivity. I have experienced this with doxycycline where even with full sunscreen, protective clothing, hat sunglasses etc I still got burned and ended hiding from the sun indoors, not what I enjoy at all. I am very fair skinned so am used to taking precautions and have also had a melanoma. I wondered if anyone has experience of the degree of increased sun sensitivity with acalabrutinib and whether this effectively precludes outdoor activities such as walking, cycling and sailing?
sun sensitivity and acalabrutinib : Hi, I’m... - CLL Support
sun sensitivity and acalabrutinib
Regardless of whatever treatment, high UPF clothing/hat and perhaps UPF gloves without fingertips (unless you wear other gloves sailing) may be warranted. With a history of melanoma, this may be prudent. As well as considering other meds you may be taking, including some OTC ones.
webmd.com/skin-problems-and...
thank you
I have been taking Alacabrutinib since 2020. I use broad spectrum spf 45 sunscreen and wear a hat for most sun exposure. I walk almost everyday.
thank you
My long-standing hyper sensitivity to sunlight has become more severe this Spring.
I’ve been on Calquence since November 2021 and was not aware of this side effect.
I do have to avoid the sun and take my daily walks after 5 pm.
Best wishes from Mary
thank you
wow. I could have written this post. Male, UK based , enjoy walking, cycling and sailing( particularly sailing , mostly in Brittany) I am also facing the same treatment options later this year. I was unaware of the particular sun sensitivity risks. Currently I take reasonable (but not excessive) precautions but I just can’t see how covering up completely is possible. I have tried to spend my retirement so far (I’m 71) in shorts and T shirt. Is the sensitivity a risk of burning or a risk of melanoma - or are the two inextricably linked ? I am not particularly sensitive to sun burn presently. Keith
It's a skin cancer risk for sure, regardless of if one burns or not. As we age, our risk also rises, CLL or no.
medpagetoday.com/resource-c...
ashpublications.org/blood/a...
This was noted a good decade ago, too.
pubmed.ncbi.nlm.nih.gov/230...
thanks for this. Useful information, if depressing!
Well IDK. It took a bit to get used to covering up more, but I don't mind it anymore. I actually dislike feeling the sun burning down on my arms nowadays! I like keeping them covered. I sunburned easily anyway, I like not having to deal with that.
thank you for the info and your reply
hi fellow sailor! I’m quite fair but my experience of drugs which make you highly sensitive to sun is that it is another level, so suspect you might burn much more easily using standard sun precautions . As you say, I think melanoma and burning can be linked, and I think both treatment paths also increase the risk of other skin cancers generally.
Thanks for your reply
I’ve been on Calquence for almost a year
I love boating, fishing, diving,hunting, walking and bike riding. I have moved to long sleeves, hats cans daily suntan lotion ( from a dermatologist).
Boating I use hoodies, face masks and gloves and now have a Bimini top.
I see a dermatologist 3-4 times a year as I’ve had squamous in the past.
So far so good!
thank you, sounds like you are on it!
I've been on Imbruvica/Ibrutinib for 3 years and just had a second opinion video conference with a CLL Specialist last week in Toronto. She told me that I have a 2x chance of contracting secondary cancer and 10x chance of skin cancer! I'm very outdoorsy but my parents are from Finland so I have a fair complexion and have always been susceptible to too much sun. Since being diagnosed with CLL I wear sunhoodies and large brim hats, long sleeves and pants and use sunscreen. So far so good.
thank you for reply and hope things stay good!
Good morning wakewatcher , i am a very active 74 and do all of the things you like to do plus we live on a 40 acre farm and that keeps me very busy . i was on calquence for 9 months and it worked great for the first few months ,then it gradually made me have severe cytopenia . it did make me more sensitive to the sun but not much .the hat was the main item for me to wear especially on the water .. the experts say we have to get some sun for the natural vit.D effect .. i had other issues with the calquence also . like petechia from my knees to my toes , lots of purpua on my arms . weird stabbing pains in my joints and muscles .and headaches .. i am now on O&V .. it was a hassle to start with but it is working great . i have almost NO side effects .i am also almost back to normal .i started about 8 months ago . the Lord has blessed me and my dear wife with the O&V working so well .. i have another appointment at the end of the month and i'll see how my blood work looks and post a full report then . ... i have gone from weekly visits to the clinic for O to only taking V now ,with 8 weeks between visits to the clinic . i would definitely go for the O&V since its a time limited treatment .. either treatment is better then having full blown CLL and no treatment ; blessings , james
thanks for your reply James and good to hear that V and O is working well for you
Hello Craterlake, I read your post with interest as you had the same effects from Acalabrutinub that I’m having. I’ve been on it 2.5 months, and Wbcs and lymphs are still going up the highest they’ve ever been for 2 months now, which onc says could be normal as dying cells are entering bloodstream. This may be why I feel like crap, which is frustrating, since after a week or 2 my fairly large nodes went down considerably, my night sweats (which were drenching a couple times a night) lessened, and my energy increased. Yay! Then 2 months in I’m having more muscle, joint pain with needle like zaps, really bad headaches that worsen at night, and lots of big bruises out of nowhere and some petechiae. My stomach aches after I take my doses, I’m fatigued and back to my night sweats (which I fortunately coincide with nightmares, so getting sleep is problematic!) I was worried about the bruising which is a stated side effect, but I can’t seem to find out why (or what causes that effect) since my platelets have remained normal. I see my onc in 2 weeks for more labs, but she always seems unconcerned about my sxs, or at least is unquestioning, only stating this is the CLL or the Rx. My nodes are increasing again too. Wondering if there are ups and downs with the disease with Acala, or if anyone has had this same experience? And as some have questioned, what would be the second line treatment? Could it be that Acala isn’t working or is it too soon to worry? Sorry about the long post. I read these with such interest and am so impressed by the level of knowledge here, and also the experiences you all share. And especially the openness of so many of you to share your own pain and the level of support shown here! Great job, all!
A month ago, I shared with you plots of how absolute lymphocyte counts (ALCs) changed with acalabrutinib/Calquence treatment for 23 CLL patients, so it's not unknown for counts to increase out to 2.5 months. healthunlocked.com/cllsuppo... However, I'm concerned to hear that you are now seeing your nodes increasing in size, because they should be shrinking if your ALC is still climbing. Please ask your oncologist to check if the acalabrutinib is still working for you. If it is beginning to fail, then you should stay on it until you have switched to your next treatment, because it still does keep your CLL under some control.
With respect to why you get bruising on acalabrutinib when your platelet counts are normal, it's because there's some tyrosine kinase in platelets and it's an off target effect whereby platelet clotting efficiency can be affected.
Neil
Hi, I’m reading this with great interest as, after 6 years active monitoring, my bloods and symptoms have reached the stage for needing drug intervention. I’ve had a bone marrow biopsy today and been prescribed Doxycycline antibiotics for my hypogammaglobulinemia. I’ll be seeing my haematologist in 4 weeks time to agree a treatment plan which I believe will be either V&O or Acalabrutinib. From my own research I have been leaning towards Acal due to lesser intervention needed, however as a very outdoorsy person I’m not so sure now and I’m feeling rather confused!
The doxycycline won't reverse your hypogammaglobulinemia, just provide you with greater protection against bacterial infections, now that you are producing less antibodies.
I lived about a mile from the beach when I was in my pre and early teens and spent plenty of time out in the Australian sun. I remember my mother taking me to the doctor after I developed what appeared to be severe sunburn, which puzzled my mother, because I hadn't been out in the sun any more than what was usual for me and I tanned well in the summers. (This was back in the 60s, before the dangers of sum exposure were appreciated.) The backs of my hands were beetroot coloured - something I'd never had before or since. The cause was a course of antibiotics previously prescribed by the GP. I don't remember what type, but it was not prescribed in the Australian summer, because of how it increased sun sensitivity. We'd had a late burst of summer conditions in Autumn, which is why this happened. I recently had precancerous spots burned off the back of one hand and my forearm and I'm scheduled for removal of a squamous cell carcinoma from my other forearm - picked up from 6 monthly skin checks.
I'm careful about sun exposure now, but I still consider we need some managed sun exposure for our good health. I never experienced anything like that childhood experience during the year I was on acalabrutinib. I recommend you discuss your concern about how your sun exposure is influencing your decision with your consultant and whether they consider your CLL presentation will respond best to maintenance acalabrutinib or the fixed term V+O treatment, i.e. how long a drug holiday you can likely expect after V+O.
Neil
Hi, your treatment options will depend on your genetics but mine were updated to V and Ibrutinib as 15 month fixed term treatment or zanubrutin life long (awaiting NICE approval this month). I find the choice very difficult but have gone for V and I looking for at least a 4-7 year treatment holiday afterwards when I can get on with my outdoor activities. I understand Zanubrutib has less sun sensitivity issues than Acalabrutinib. Hth
Given it's the first I've heard that "Zanubrutib has less sun sensitivity issues than Acalabrutinib", and that acalabrutinib has less off targets than zanubrutinib, do you have any reference concerning this?
Thanks,
Neil
should have typed Zanubrutinib, there is good material about it on this CLL forum and it is approved for use in US and Europe, awaiting UK approval. I understand it is as effective as acalabrutinib and has fewer side effects in terms of heart problems and sun sensitivity. But I am only an amateur at understanding it all. Bw Ian
One needs to know IVGH mutation status, FISH, Flow cytometry, and preferably recently beta2microglobulin & LDH trends, TP53 test/which one if mutated, and ideally NOTCH-1 plus recent cell line trends to guess at a "next appropriate treatment" IMO. Some docs might look for a few other markers, depending. None of these are in your profile, I would not hazard any kind of guess.
With CLL being so heterogenous, there's no "do this first then that". Similar to when a doc says "you have heart disease" there are a battery of tests to determine which parts are dysfunctional and exactly what kind of heart disease you have; then depending on the tests, a treatment is selected. It's beginning to get this way with CLL.
Hi Islandjewel23 , i like all posts ,long or short . like you i always learn something on this wonderful site .. i am with Neal . your ALC could still increase through the second month but i would think that your lymph nodes and night sweats should not .even though i had my ALC double my CLL symptoms went way down by the second month especially my huge spleen .. thats why my ALC went way up because the calquence was making my spleen dump the cells it had stored there into my blood stream ,....but i did feel yuuuckky till the blood stream was clear of dead cells ... if the calquence has failed . you can start on O&V like i did .it has been considerably better for me even though my clinic is a 5 1/2 hour round trip ... please keep us posted and keep looking up 😊 .. blessings , james
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