Sun sensitivity

[J-girl]

Has anyone found that they are hyper sensitive to the sun? I am doing a higher level of skin protection that I have done in the past and find myself burning fast and easily.

[CLLCalifornia-USA]

Hi J-Girl,

I'm not sure if the sensitivity to heat is CLL or getting older. I'm 65 and have never been a sun worshipper. I have always had a tendency to burn easily. I avoid the sun and layer on the sunscreen daily. It's hard because I love the outdoors, just not the heat. I have had several (3) precancerous spots removed, so I don't take chances. Be careful with sun exposure. Good luck.

Kind regards,

Sally (USA)

[Sepsur]

I was told to be careful of the midday sun especially, CLL sufferers are 10x more likely to develop skin cancer - I slap on factor 30-50 - not worth the risk 😳

[Mijoed]

I wouldn't say that I'm hypersensitive but it is known that CLL patients are more susceptible to skin cancers. BCCs seem to be commonly reported and I have had a couple removed. Certainly use plently of sunscreen and make an effort to avoid exposure. It would seem that days of lazing around in the sun are over.....

[Hidden]

Before treatment, no. They said I'd had CLL for 10+ years without being diagnosed and during that time I lazed by many a pool in Egypt and Greece.

During FCR treatment sun was a no no. As advised by the nurse. So only early morning or late afternoon relaxation in the English garden.

Now post treatment I'm very sensitive to the sun and I use factor 30. I also have to watch the time I can spend in the sun as it is much shorter.

However, I'm back to my light tan as are most of the locals in my south west county.

[RJR1]

I watch it and use sunscreen (30 or 50) especially on my bald head. But that's really more a vanity issue as I dislike the cue ball look. I spend the winter months in AZ and do tan but not to extreme dark, just a glow. Moderation is the key and common sense

[fieldmeadow]

I became hyper sensitive to the sun following FCR treatment. My doctor said this may improve over time - but 4 years on my skin is still super sensitive. Was advised to use factor 50 or cover up and wear a hat that does not let harmful rays through it. My skin breaks out in tiny blisters after 15 minutes unprotected exposure, appearing a day or two afterwards and lasting about 2 weeks.

[cllady01 Former Volunteer]

J-girl, by any chance do you take a thyroid supplement? There may be other meds you are taking that make you sensitive to the sun--I know thyroid meds do.

The words of all re: the need to be cautious because of being more susceptible to getting skin cancer are good to follow.

[J-girl in reply to cllady01]

I'm not taking a supplement. I used SPF 50 and still got a burn. In the past I could use 30 and be ok. I have noticed I am having really strong reactions to bug bites too, with extreme swelling. I thought maybe the skin sensitivity was connected.

[catmad1 in reply to J-girl]

Hi there, The bug bite thing is also a side effect of CLL. It is well documented that sensitivity to various things becomes more apparent with the onset of CLL, Sorry! Just use a lot of insect repellent if you must go out into the bushes!#Catmad1

[cllady01 Former Volunteer]

skincancer.org/skin-cancer-...

The above site should be a good read to help you understand how best to protect yourself from sunburn---as has been said, with CLL you are more susceptible to skin cancer. It appears, there is less protection than we think when we use SPF of whatever level but maybe do not re-cover at points, or we sit by the pool in the sun for the entire time.

The best I guess any of us can say is with CLL we are more susceptible by a factor of 10 to skin cancer whether on treatment or not.

Several on this site have stated they are more sensitive to bites.

[PaulaS Volunteer]

Hi J-girl,

Sorry to hear about your sun problem. It may not be relevant to you, but i thought I'd share my experiences with this.

After I'd been taking Lansoprazole for several years (a med to reduce excess stomach acid), I developed an extreme sun sensitivity. It wasn't just a skin problem, it was nausea, fatigue and aching throughout my body. It would last for several days after I'd been in the sun, even if it was only dappled sun and only for a short time.

No amount of sunscreen, however strong, made any difference to the nausea and aching. So for years I had to cover up completely in the sun, with a wide-brimmed hat, big sunglasses, long-sleeved tops etc. Sometimes I carried a big umbrella on walks, with a special lining to keep out the sun. Those things helped but didn't complete stop the problem, so eventually I was avoiding any sunshine as much as possible. Not much fun for an outdoor type like me...

Eventually a dermatologist (who I saw because of a mole) told me it was a rare side effect of Lansoprazole. So I stopped the Lansoprazole (took Ranitidine instead) and soon I could tolerate sunshine again. It was such a relief! I still have to be careful in the sun, but nothing like before.

You're probably not taking Lansoprazole, but as cllady01 has said, there are many meds that make us more sensitive to the sun. Sometimes it's not till we've been on them for a prolonged time that we get the reactions. Also, the longer we have CLL and it progresses, the more likely we may get strange reactions to things.

I do hope you find some solutions that work for you.

Best wishes,

Paula

[spt5 in reply to PaulaS]

I can relate to this ! I have cll and take lansoprazole and feel nauseous in hot weather, I put it down to age tbh, but as soon as my body temperature rises I feel dreadful, I am actually happy when its a cloudy, cool day.

I will try your alternative, got nothing to lose 😊 thanks for sharing your info x

[PaulaS Volunteer in reply to spt5]

Hi spt5,

Sorry to hear that you feel nauseous in hot weather. I know just what you mean re feeling happier to see a cloudy, cool day.

There are other problems that can come with taking Lansoprazole longterm, not just sun sensitivity, so it is well worth discussing alternatives with your doctor.

I see this is your first post on this forum – so, welcome to the community! You might like to write more in your profile, to give people more background as they respond to other questions you might have.

healthunlocked.com/profile/...

healthunlocked.com/cllsuppo....

Best wishes,

Paula

[MsLockYourPosts Passed Volunteer]

I burned very easily all of my life, until a few years ago - about the time I got my Vitamin D level up. I don't know whether there is a connection, but it's nice to not have to be as careful as in the past. California girl and not the type to sit in the sun, but really minor exposure, in the past, resulted in a burn. I was very surprised when I tested as deficient for Vitamin D. It's worth getting it checked.

[Fant1924]

In general, those of us who have CLL are also a bit older, older than conventional wisdom today about the harmful effects do the sun. it is cumulative. Wear sun protective clothing is a best first choice. Next choice, choose a broad spectrum, blocks both uv a and b, sun screen with an SPF of 30 ( 15 blocks 93%, 30 blocks 97% so there little need to seek higher SPF). Physical block, titanium or zinc dioxide, is best but leaves the skin a little white. If using chemical block, choose Avobenzone indegredient because it is best against uv b. UV B penetrates clouds and sunscreen is necessary no matter the cloud cover.

Dennis, 70, 17p-, Ibrutinib

[sandybeaches]

Also keep in mind that harmful rays penetrate glass, so beware of sitting too close to a window in the house or work environment during 10 am to 4pm from April to October in the northern hemisphere. ( if you cast a shadow, you are too close ) Protect yourself in the car as well.

As other people have said, we are much more susceptible to skin cancers than the regular population. Make sure you wear a wide brimmed hat - four inches - for adequate protection of face and neck. Wear either UV protective clothing or tight weaved fabric clothing with long sleeves and legs/skirt. Even on cloudy days.

I was diagnosed with a grade 0 melanoma last year, which was removed from my forearm, and now have a lovely scar to remind me. Just a few weeks ago I had another removed from my thigh, and another scar. I see a specialist dermatologist every 6 months for skin checks, and we should do one every month. I have had squamous cell in the past treated with a topical cancer cream.

Wear a very good sun screen and reapply as per directions. The ladies can also use a BB cream with a good sunscreen and makeup over it if desired. Also protects from the aging effects of the sun, if that is a concern.

I have always been sensitive to the sun and bug bites, and now they are even worse. Perhaps lowered IvG and IvA are the cause.

All the best for the summer,

Sandy Beaches ( west coast Canada )

[AussieNeil Partner Administrator in reply to sandybeaches]

Good points, to which I can add that the degree to which clothing blocks UV can't be determined by how dark (absorbing) it is to visible light, so as you note, it is better to choose a tight weave or clothing with a stated UV protection rating. (This is particularly important if management where you work aren't able to accommodate a request to move away from a sun exposed window.)

This Sunsmart article provides a few more tips, including information about the Australian and New Zealand standard for UV protective clothing: sunsmart.com.au/downloads/r...

Note that glass does block a significant amount of UV radiation, but it depends on the glass thickness and other factors like film tinting. (Older homes may have thinner glass and double glazing of course gives greater protection). This is why photo-chromic lenses don't work that well in the car or near a window - there may be insufficient UV to trigger lens darkening. But as Dennis Fant1924 points out, exposure is cumulative - that's pretty obvious if we compare our sun exposed skin to skin we keep covered.

Neil

[Lola69 in reply to AussieNeil]

i am presently in punta cana day 5 and burnt my back. i am never taking another carabean vacation again. cloudy too!

[catmad1]

Hi Jgirl, Am I right in supposing that you fit into the general id of someone with CLL, like being more mature (older)? If so, are we not all being advised to use skin protection, shade up and keep the fluid intake up especially during hot weather. With a few more years exposure to UV light etc, our skins are likely to become more sensitive surely? Also, having had breast surgery and radiotherapy for breast cancer, I was advised to keep from deliberate sunbathing anyway. I don't think it is generally advised to spend too much time in the direct rays of the sun, unless you are well protected, and anyway, looking pale and interesting is a far better look than a really bad case of sunburn. Trade on the glamour side instead!

CAtmad1

[scarletnoir]

My own experience is that, after a successful treatment with BR, I soon afterwards got an enormous squamous cancer on the nose (nearly as big as the nose itself!), also thankfully treated successfully... that was 4 years ago. So, watch out!

You've been given excellent advice here... I didn't find that my skin is more sensitive to the Sun than before, but I'm fair and have never liked spending too much time in direct sunlight. I now follow the usual advice - avoid direct Sun when it's strong (usually given between 11am-3pm in the UK, BUT I always check the BBC weather site, which gives a local forecast of likely UV levels. Of course, if the forecast looks wrong I apply common sense!) I wear a nice, broad-brimmed hat (with string, so I don't lose it when the wind blows!); and I use factor 50 on my face and other exposed skin, plus an anti-UV lipstick.

So, be careful, and look out for yourself - especially as you are more sensitive than you used to be.