Hi guys. I thought I'd share a timely warning I received yesterday. During my regular check-up with the hematologist ( treatment in December or January now, unless the WBC plateaus) he noticed I was bare-shouldered. Now I like to go out in shorts and sleeveless shirts in the warm weather (Spring here). He said to cover myself, or my 'skin would be a mess in five or six years'. I didn't know CLL makes us susceptible to skin cancer, and now I do. So I went out and bought some long-sleeved shirts for the summer, put on me old straw hat, and slathered myself in 50+ sunscreen. I'm sure most of you are much wiser than me on this score, but I thought I'd share for the newbies like me.
Take care, everyone!
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Guffy
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See my derm twice a year. I think we’re 8x more likely than the general population to get skin cancer. I’ve learned it all on this amazing site. Glad you’re aware now
Those with Low-Count Monoclonal B-cell Lymphocytosis (MBL) should also be vigilant about regular skin checks and sun safety. A recent study found their risk of melanoma similar to that of those with CLL.
In a Mayo Clinic article, Susan Slater, PhD, a senior author of the study, said, "Our study is the first to show that people with this pre-cancerous stage of MBL have a 92% elevated risk of developing melanoma. The risk of melanoma is similar to what we see among people with chronic lymphocytic leukemia".
This week, The American Journal of Managed Care® (AJMC®) also published an article about the study that said:
"MBL is a premalignant condition that is roughly 500 times more common than CLL, which itself is associated with a 2-fold increased risk of melanoma. It had been unknown whether patients who have MBL had an increased melanoma risk."
“Given that unrecognized MBL is prevalent in approximately 5% to 12% of the US population older than 40 years, these results have meaningful effect on melanoma rates in the population. An estimated 5% to 10% of individuals with incident melanoma could be associated with underlying MBL,” the authors wrote.
"Melanomas in patients with CLL are typically detected at a late stage and belong to a more aggressive disease phenotype compared with melanomas in patients without CLL. It has been hypothesized that the greater risk of melanoma in patients who have CLL is caused by underlying immune dysfunction and genetic susceptibility, and is an adverse event after chemotherapy. Some evidence also links the increased risk of melanoma to patients with CLL with T-cell–activating autoimmune conditions like Graves’ disease and psoriasis. Existing research suggests that some of these immune defects are active at the MBL phase."
I’d say so. One of the first pieces of advice I received from my CLL specialist after my diagnosis was to be sensible about sun safety and have regular skin checks.
I think your hematologist is out of touch with reality. I do regular full body Sun exposure from spring to Fall, every day when the Sun shines, enabling me to do so. 2 days ago the last time. I have been doing this for the last 12 years and I can assure you that my skin is not a mess. Matter of fact my dermatologist told me that I have very few moles and spots compared to others my age. My wife is younger, she doesn't have CLL, she almost never sunbathes and her skin is a mess. So there's that. The hematologist should have told you about vitamin D deficiency and how it increases cancer risk. Also about how sunscreen soaks into the skin, what it contains and whether that is healthy. I religiously avoid sunscreen and I never use it. So this topic is way more complex than the simplistic advice of "avoid the Sun because it will give you skin cancer" goes. I'm sure that a lot of people get skin cancer and other cancers too, exactly because they avoid the Sun at all cost all the time. It becomes even worse when those who are Sun shy from time to time for whatever reason get sunburn. Too much of a good thing is of course a bad thing. But too little of it is bad too. It makes zero evolutionary sense to completely avoid Sun exposure. And everything that does not make evolutionary sense makes no sense at all in my book. So the way I do it - I make sure to never get sunburnt. When my shadow is as long as my height (about half an hour before to half an hour after) I go outside and do my daily exercise routine on fresh air, soaking the Sun in. After that I stay in the shade or dress up to make sure I show no exposed skin to my friend, the ☀️😀. There is no sense in prolonging this Sun exposure because all the cholesterol that collected in the upper layers of the skin during the past 24 hours gets converted into vitamin D by the time I finish. So I need to replenish my skin cholesterol levels first before I go out to Sunbathe again. No Sun, no life. Cheers to lowering serum cholesterol levels (sarcasm). Now this is just me, I never had skin cancer and my immunity seems not to be compromised too much at this stage. The last time I was sick (with a fever and signs of infection) is 6 years ago. And here comes the chicken or egg (or trillion dollar) question. Can I do this because I'm still in fairly good health, or am I in fairly good health because I do this? I wish I knew for sure, but have my convictions 😀 Those who already had skin cancer - please disregard all of this because I have no idea what I would do if I were you.
Thanks for taking the time to speak to me. I appreciate your own experiences, but I think I prefer to take the advice of a physician who has made CLL his specialty. I don't think it's wise to advise patients to ignore the advice of their doctor on such a vital topic.
I agree with you LeoPa, even the Victorians used 'sun therapy' for curing many diseases (including cancers!) and so many are actually deficient in Vitamin D, which greatly increases your chances of getting cancer.......And don't get me started on those toxic sunscreens!!! 😱
Victorians ??? Couldn't have chosen a worse lot for an example, lead, arsenic, prussic acid A.K.A Hydrogen cyanide, and strychnine as ingredients for what ails you?
There is quite a misinformation campaign making the social media circles about sun protection.
Everyone should make their own choice after diligent study of medical facts that weigh all the factors. Make sure the band wagon one jumps on is not a hearse.
If we were designed to stay out of the sun most of the time, we would have been born wearing clothes.
Our bodies tell us when we've had enough sun, but the sun is incredibly healing and we need to get 'enough' un-adulturated sunlight on our skin to be healthy and get good Vitamin D levels.
Brambles_Mum, Ummm our lifespan used to be in the 30's. After the antibiotic revolution, and surgical as well as other techniques to prolong aging, our skin is taking more of a beating than "what was designed."
Just because we managed to evolve without hairy bodies doesn't necessarily equate to "we don't need to cover our skin." We've also spread across the planet & exposed ourselves to different food sources compared to when Homo Sapiens first managed to evolve out of Africa. Those who stayed evolved to get darker skin; those who left the area of constant sun learned to cover up or die from weather exposure, yes? Learning to clean off our teeth led to less dental disease/infection which contributed to longer lifespan, yes? Learning that bathing contributes to less disease contributes to longer lifespan, yes? So it's not true that "leaving our bodies exactly as when we were born" is necessarily a good thing.
Hi Brambles_Mum, yes we all need and benefit from maintaining our vitamin D levels regardless of how we achieve this.
However, as I have lost two close relatives to melanoma caused by sun exposure and in recent years my sister was also diagnosed with a melanoma on her leg which required urgent surgery.
As for myself my own skin cancer diagnosis’s we’re all blamed on sun exposure plus the added CLL element.
We all have different experiences with our own sun exposure’s.
That's a gross over generalization in reasoning. "If we were designed to . . . we would have . . ." One then, must negate any beneficial advances made as well.
Consider also, the latitude one lives at. There are varying degrees of sunlight available thus, vitamin D levels are going to drop farther away from the equator in your way of thinking.
Taken to the same over generalized thinking, all temperate areas should have people running around willy-nilly with nary a stich on while our tropic counterparts are dressed like just so many Victorian sea bathers parasol and all. 😉
"Chemical sunscreen ingredients form a thin protective film that absorbs UV radiation before it penetrates the skin." and
"chemical absorber sunscreen ingredients are usually clear and easy to apply, but these are more likely to cause irritation and allergic reactions." - how so? We all have a dead layer of skin that keeps peeling off at all times. If sunscreen can cause allergic reactions, it sure gets under that layer. Anybody used oily, creamy sunscreen that does not soak into the skin? So does it absorb UV radiation after the skin soaked it up or does the skin soak it up after it absorbed the UV? The skin is an organ through which all kinds of stuff can be taken up by the body. Especially chemicals. So how does sunscreen not penetrate the skin yet can cause allergic reactions?
"For example, physical blocker sunscreens generally do not cause irritation, stinging or allergic reactions, but they can be white and greasy." - I have no problem with these. Maybe hard to wash out of clothes but OK
"the benefits outweigh any potential risk. " - where have I heard that? I know, yeah, same with vaccines too. Mind you I'm no antivaxer, got my three shots like most reasonable people did
"there are carcinogens in nature, and too much UV radiation from the sun is an example of that,” - sure, the key phrase here is TOO MUCH.
"Studies show that the chemical and nonchemical sunscreens available today all appear to be safe" - no guarantees of course. I appear to be a nice guy most of the time but from time to time I'm not
"UV damage plays a central role in the development of most melanomas, basal cell cancer, squamous cell cancers and other less common skin cancers, " - yeah, that's why oftentimes melanomas develop in places that never saw sunlight.
I'll rest my case here. Too many maybes and whatnots for my liking.
My GP and my dermatologist have had a long running feud about this for the past 15 years. I had a vitamin D deficiency in 2009 along with a supplement my GP told me to sit in the sun for 15 minutes a day. My dermatologist said only with sunscreen but GP said no sunscreen and only 15 minutes.
I did this when I worked, sitting outside for 15 min during my lunch break whenever possible. It has no effect on my skin and it did improve my Vit D level. I see my dermatologist every 6 months since CLL diagnosis and have had no skin issues in over 20 years. I am fair skinned with lots of moles ( presents from my parents) and my dermatologist does a great job keeping watch over all of them. Since retiring, I rarely wear sunscreen, only when I expect to be out in the sun for a longer time period. I am an old lady, so I keep most of my skin covered now anyway🤪. Moderation is key.
I’m glad you added your final sentence Leo because given a history of melanoma and being on medication that significantly increases my skin cancer risk if exposed to sunlight, I’m afraid your personal approach wouldn’t feel quite so safe for me.
Re: the long-sleeved shirts ... I have a few UV long-sleeved shirts from Amazon for when the sun does decide to make an appearance up here in Scotland!
😁A certificate purchased for a couple of hundred tells me I'm a laird of a square metre of land in Glencoe! I'm also a Campbell, but whenever I mention it to other Scots, they inevitably tell me my ancestors killed theirs! Never been to the land of the clan, but I have eaten haggis!
The Massacre of Glencoe took place in Glen Coe in the Highlands of Scotland on 13 February 1692
The brutality of the massacre shocked contemporaries .. approximately 120 men from the Earl of Argyll's Regiment of Foot arrived in Glencoe. Their commander was Robert Campbell of Glenlyon.
They were the 'guests' of Clan MacDonald of Glencoe ... on the 13th Feb, the MacDonalds woke to find that the glen had been blocked off to prevent any escape route ... their 'guests' began killing, NO one was to be spared ... houses torched and cattle and goods looted.
Best to sleep wi' one eye open if ye marry a Campbell😴
Wait! ... come to think about it, the terror of our Primary school wis a Campbell, chalk and blackboard dusters were known to 'fly' across the classroom ... on the plus side ... they do make exceedingly good soup 🥫👍
Ha! Oh, my. I'll just go and quietly shoot myself!😂 I inherited a coast of arms from my Dad. It reads 'Ne obliviscaris' - 'don't forget. Now I don't know what we're not meant to forget, but it seems it should be the motto of every clan that's not Campbell!
It is indeed ... Ne obliviscaris ... Campbell soup is world famous ... It might be 300+ years since the Glen Coe incident ... but if you buy said soup in Scotland, best ye go through the self service checkout ... 😎
Guffy, your jovial banter with ygtgo has given me a welcome lift from the daily CLL grind and brings back so many wonderful memories of family holidays in bonnie Scotland over a period of more than 50 years.
It all started with my dear old dad, an honorary “jock”, London born in the 1920s and served in a Scottish regiment during the war, the 8th AS&H.
He was often asked why an Englishman should have served in a Scottish regiment and he would explain and talk of the sacrifice of the 51st Highland Div at St Valery in 1940.
It was they who fought the rear guard during the evacuation of Dunkerque, a disaster that led to the loss of so many Scotsmen, depleting so many Scottish regiments of manpower that led to recruits being drawn from all over UK.
Throughout the years my children and grandchildren have shared the wonders of our holidays and continue to do so to this day.
My grandson is now planning to be the driver for our next trip north of the border, all being well of course.
The only story I remember him telling me that he was a sniper and that his main 'posting' was during the Suez crisis ... well 'posting' was not the best way to describe it ... (due to the political involvement behind the scenes) ... "We sailed up the Med, down the Med and round and round the Med - then they sent us home".
I stay not too far from Stirling and the castle, it has always been my favourite historical place to visit. The Argyll Sutherland Highlanders Museum being a main feature.
Last year my son decided to take us out for the day, and sure enough we ended up at the castle (he remembered days up at the castle from his childhood) ... but ... er ... my mobility is poor, he had loaded me fold down wheelchair in the car and took me to a castle? ... I'm also going deaf wi' 'blind mans' glasses on due to an old eye injury.
So as we entered the castle and he went to pay the entrance fee, I sat there looking like 'a poor wee lamb' in my chair ... a member of staff approached to say that they had wide tyred wheelchairs (better for travelling over the cobblestones) As we went round the site, there was always a member of staff who was waiting to guided us round the best route, even opening parts of the castle that were closed to the public ...
As we were leaving, again, a member of staff approached to ask me if I had enjoyed it ... I pointed to my son pushing the chair " I did, he didnae!" ... Castles weren't built wi' wheelchairs in mind.😎
Stirling castle was the 8th Batt depot. I remember my dad saying how on one winters morning, snow on the cobbles, they were called too parade saying how he slipped and soaked his kilt and whilst marching the wet material was slapping at his thigh.
Over the years we often visited Stirling and the castle was not to be missed. On one occasion my dad was telling some tale or other when this Scottish lady politely enquired asking my dad were you in the Argyles? And asking would the name Fred Scudder mean anything to you?
As it happened, yes my dad remembered him as his Company Sgt Major (also an Englishman) adding in those days the cry would be “scatter here comes Scudder”
It just so happened that Fred Scudder was up at the castle visiting Colonel Woods and a new friendship was established which lasted for many years up until my dad passed in 1997.
What a small world we live in that having CLL and other difficulties could bring to light a common shared interest.
Hi, I’m on watch and wait. I have had 3 areas of skin cancer treated recently. I asked about sunscreen in Boots the chemist and they suggested a product that is for people who have skin cancer on their face. It’s new. Not tried it yet but bought it because we are going on a cruise in November. Eucerin spf 100 Actinic Control MD I got it on Amazon as Boots had run out.
Having had several basal cell carcinomas excised and waiting to have a few more done, my dermatologist emphasises every time I see her to cover up in the sun and protect the exposed bits with a high SPF sun cream. Then again, I am fair skinned and blue eyed so that makes me more vulnerable.
Meas well. Fair haired red head. I’ve had 3 MOHs so far , but I find it so hard to stay in long sleeved shirts when it’s 90F and humid here in the states! My dermatologists recommend daily co symptom of “Heliocare” capsule, a naturopathic type product that helps body rid itself of free radicals. I have NO idea if this works though.
Early studies show this plant extract contains a high amount of several antioxidants, and is effective. The numbers are small for sunburn (40 people total, half getting placebo) but there have been studies for other skin inflammatory conditions where it's also been effective.
no one told me, probably because I was first diagnosed in eastern Washington State where the sun is relatively weak. Three skin cancers later, I have wised up
My dermatologist does not disagree with all the advice. However, she does say that a lot of the damage was done 30+ years ago when a lot of us spent many hours unprotected (and generally unaware) in the hot sun. Best advice is to have you and your partner check for unusual or suspicious spots all over your body on a continuous basis and to go for check-ups with your dermatologist regularly.
Yeah. Aussies have the highest cases of skin cancer relative to population in the world, owing to the lovely sunshine. As you say, most damage is done in our youth, with the beach culture and sun bathing.
I think we need to be mindful of the aggravated risk of sun damage whilst on certain CLL meds however. I’m very aware that Zanubrutinib increases my skin cancer risk significantly if I was unwise enough to subject myself to the sun for any length of time. I’d be unlikely to do this with or without sun protection.
I’ve read the competing literature and ‘research’ on the benefits and evils of sun protection versus moderate sun exposure (factoring in the Vit D component) but having had a scary brush with malignant melanoma, I’m inclined to be extremely sun wary. We are in a different category or risk especially whilst on certain medications.
I can recall suffering quite nasty sunburn on my chest in a matter of minutes whilst on Ibrutinib so at the moment much of my Vit D will have to come from a bottle or nutrition I’m afraid.
Hi Guffy, I’m one of those who learned of this the hard way. I do have yearly skin examinations at the Royal Marsden after having 6 procedures for minor skin cancers, eg BCC, Squamous cell and Bowens and I avoid the sun as much as I can but do use factor 50 sun screen when outdoors.
Since my first chemo I've had 15-20 skin cancers some of which required big surgeries
You should see a well trained dermatologist every 4-6 months, and have a good self check regularly and have anything suspicious checked out cuz in CLL, small cancers can grow very very fast.
I was diagnosed with CLL in 2017. I have been at stage 0 but through blood tests know that I am immunocompromised. I am fair skinned blue eyed of Northern European ancestry. Twenty years ago a spot appeared near my upper lip. It would itch and bleed. I went to the dermatologist who did a biopsy and it was basal cell. I had a plastic surgeon remove the lesion. Since then I do wear sunscreen and sun protective clothing. Last month I was bothered by a spot on my left nostril that would itch and bleed. Off to the dermatologist who did a biopsy. The biopsy came back as basosquamous cell carcinoma. It is supposedly more aggressive that basal cell. I am scheduled for Mohs surgery in two weeks. I have a lot of anxiety about this as I hope my nose won't be too disfigured. I don't care what others might have said about sunscreen I am wearing it. I also have been wearing a makeup that has a rating of 28 also.
The image in this post comes from a SunSmart campaign in Australia that has been very successful in reducing the incidence of skin cancer.
In August 2024, research confirmed that, 20 years into the campaign in Western Australia alone, it "is expected to prevent 300,000 skin cancers, save 1000 lives and return $8.70 to the public purse for every dollar spent over the next 20 years."
Louisa G Collins, Carolyn Minto, Melissa Ledger, Sally Blane, Delia Hendrie, Cost-effectiveness analysis and return on investment of SunSmart Western Australia to prevent skin cancer, Health Promotion International, Volume 39, Issue 4, August 2024, daae091, doi.org/10.1093/heapro/daae091
The article above explains the need to promote awareness of the dangers of UV overexposure and support measures to reduce the risk of skin cancer. It also highlights the high costs of treating skin cancers ($100,000 per patient) and the benefits financially as well as medically that the SunSmart campaign has achieved.
Daily weather information in Australia indicates when the UV risk is expected to be highest each day and it's recommended to follow the SunSmart advice at those times of the day when the risk of skin damage is higher. "When the index hits 3, cover up from UV". There's a SunSmart Global UV app available for Google and Apple phones. sunsmart.com.au/resources/s...
Research continues to seek answers to why some people develop skin cancers and others don't, including why some with CLL do and others don't.
It's a beautiful day here today in Philadelphia and I'm planning on taking a long walk with my friend because, let's face it, living with CLL can be mentally draining at times. Being in the sun is great for my mental health, and I'm gonna put sun screen where I tend to burn, and wear a long sleeve shirt that blocks UV rays. I'm also gonna take a water bottle with me. There is already melanoma in my family. Everyone has their own personal history and situation to consider when making lifestyle choices. I wish you all blue skies.
Thank you. Love the picture. Yes, I'm not going to be a recluse. Love my walks in the sun, listening to the birds, watching people in the park. We can't wrap ourselves in cotton wool, can we? We just have to be a little cautious. Life is too short to cling onto life so hard that we squeeze all the joy from it. All the best to you.
I put on a special cream on my face everyday with an SPF of 50 to try to keep my skin healthy and prevent skin cancer. I see my dermatologist every four months. I was sunburned many times as a child when sun screens were quite unreliable so I am at high risk for skin cancer even before CLL is taken into consideration.
I have learned that what others experience with their health and well being may not be what I experience. So I do my best to follow my doctor’s advice and what works for me.
I recommend everyone, those with CLL and those without a diagnosis, take skin cancer seriously, see a dermatologist regularly and use sun screen without fail for skin exposed to the sun. An alternative is to wear clothes that protect your skin from the sun.
As for Vitamin D, I take a supplement daily. That is less risky to me than sunning myself.
In general, anecdotal evidence is not very useful for determining the best course of action. As an example, the odds of winning the various lotteries are very low and the expected value of a lottery ticket is less than the cost. However, “someone has to win”. So if you only consider the people who win, the lottery looks like a good course of action. It’s only when you look at everyone’s experience that the true picture emerges - buying a lottery ticket can be fun, support charity, make good gifts, but aren’t a good use of one’s money beyond that.
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