Because CLL patients are susceptible to secondary cancers including skin cancers. It is important to have screenings by an Oncology Dermatologist on a regular basis.
The following site gives great visual presentations of 6 types of skin cancer along with some narrative.
On this site follow the Blue NEXT arrow and ignore the other possible sidelines that can get you lost.
NOTE:an unlocked post. If you have a personal situation in regard to skin condition you want to reveal, it would be best to post and lock you post rather than reply here to keep you and any who reply safe to give private info.
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cllady01
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This article insinuates that Sun exposure is a bad thing. However for healthy people who don't eat much fish moderate sun exposure is beneficial because it creates vitamin D by converting cholesterol in the skin. 4 times a week 20 minute full body exposure is about enough, depending on complexion and time of the day, season. The darker the person the more time is needed. Insufficient sun exposure is as unhealthy as too much of it. One should never get burnt and always use common sense.
However, people on Ibrutinib are advised to avoid sun exposure and advice on the amount of time deemed safe is hard to find. I’ve never been a sun lover anyway and living in a colder area in the northern hemisphere, it’s never been a problem. I don’t actively sunbathe or use sun beds but I still got a melanoma 18 months after being dx with CLL. It has to be remembered that melanomas can develop where the sun don’t shine and due to our dysregulated immune systems, active sun exposure needs to be practised very safely. I’d personally be wary of 20 mins full body exposure in very high heat but clearly we do need some degree of sunshine.
Exactly Newdawn, melanomas can develop in body parts and areas where the Sun does not directly shine, and not only in CLL patients. So there are other reasons for their development too. I never bought the idea that the Sun is the culprit and thus Sun exposure is to be avoided. Sometimes it is, but at least as many times it can be vitamin D deficiency. Therefore the mainstream medical advice to always cover up and use factor 50 sunscreens propagated to the general population does more harm than good.
Your ending statement makes me nervous LeoPa. Do you have supporting evidence of this assertion?
This is taken from the American Cancer Society Site;
‘Some melanomas occur in parts of the body that are rarely exposed to sunlight. These melanomas often have different gene changes than those in melanomas that develop in sun-exposed areas, such as changes in the C-KIT (or just KIT) gene.’
However, that doesn’t confirm a theory that the majority of melanomas are not attributable to sun damage. My dermatologist was very clear about that and I’m pretty certain my melanoma related to previous severe sunburn decades earlier. Another reason we should never let children and young people burn!
Some melanomas can even develop on the genital areas and not many people have those exposed to the sun 😳
However, I can’t find evidence for your suggestion that lack of Vitamin D is responsible for melanoma development. As you say in your post;
‘So there are other reasons for their development too. I never bought the idea that the Sun is the culprit and thus Sun exposure is to be avoided. Sometimes it is, but at least as many times it can be vitamin D deficiency.’
Do you have any authoritative references for that theory LeoPa?
I’ve certainly heard that Vitamin D deficiency is associated with a worse prognosis in people with melanoma (as it seems to be with many conditions) but no actual causal link.
The theory you espouse about the benefit of regular sun exposure without protection to boost Vit D levels is a contested one and somewhat hazardous for this particular audience!
Newdawn, if you mean direct evidence that vitamin D deficiency caused melanoma in a a specific case or number of cases, the answer is no. This will never be proved because its impossible to state the particular reason for the development of any specific cancer, melanoma included. I'd like to know what started my HCMBL but I'll go to my grave without knowing it. However in an indirect way: vitamin D deficiency weakens the immune system.
"Research in the laboratory suggests that vitamin D has anti-tumor properties, regulating genes involved in the multiplication and spread of cancer cells, Churilla tells WebMD."
Therefore whatever the trigger of cancer development, vitamin D deficiency (or abundance) can make the difference between the immune system being able to eliminate the cancer cells in the very beginning or let them slip out of control. This goes not only for melanoma but for any other cancer type as well. This is what I meant.
I did not need to see more proof than this because it makes evolutionary sense. We'd have died out as a species if we were so fragile as to having to hide from the Sun. Our ancestors working day long outside certainly did not religiously hide from the Sun but the recent surge in melanoma cases as well as cases of other cancers tell us we are doing something wrong. If someone was to say that tourists from Britain spending two weeks a year in south Spain (and getting sunburnt a few times during the vacation) is the reason, I'd say probably yes, in some cases. But there are other cases too.
As far as genetic mutations are concerned in this melanoma or that, I think those are over rated. It's impossible to connect any specific mutation with any specific cancer. They are random. 50 years of cancer research led to nothing, because cancer is not a genetic disease. People are dying by the thousands every day, because the whole field is simply looking the wrong way.
‘Some studies have suggested a link between low vitamin D levels and cancer risk and progression, but others have not. None has proven cause and effect.’
I’m very nervous about taking melanoma down the vitamin deficiency causation route because as you admit, there is no scientific evidence. The link you provide is from Dr. David Jockers who is ‘a natural health doctor, functional nutritionist, corrective care chiropractor, exercise physiologist, and certified strength and conditioning specialist. He owns and operates Exodus Health Center in Kennesaw, Georgia. Dr. Jockers has developed six revolutionary online programs, including "The Cancer Cleanse."
He therefore would seem to have no credentials in either dermatology or genetic science.
You say - ‘As far as genetic mutations are concerned in this melanoma or that, I think those are over rated. It's impossible to connect any specific mutation with any specific cancer.’
Maybe you’re unaware of the pioneering work that’s been done by Professor Penny Lovat, Professor of Cellular Dermatology and Oncology at Newcastle University and Dr Rob Ellis, Consultant Dermatologist who have researched and identified biomarkers which form the basis of the AMBLor test, namely two protein markers AMBRA1 and loricrin which are normally present in the upper layer of the skin. They found that the loss of these markers in patients with early-stage melanoma is associated with high-risk tumours, whereas if the markers are retained there is a significantly reduced risk of their tumour spreading.
The amazing genetic work they have done and their findings have have developed a test which offers personalized, prognostic information—so doctors will be able to more accurately predict if a patient’s skin cancer is likely to spread.
I’m delighted to say it was Dr. Ellis who treated my melanoma and he was very clear about the impact of sun over exposure but accepted that my immune dysregulation had probably activated a response that a non affected person may not have experienced. He’s a remarkable doctor and pioneer in his field.
I’d never underestimate the importance of cholecalciferol which is why I take a daily prescribed supplement but it’s too much of a stretch for me to hypothesise that deficiency is attributable to the development of melanoma. It also could deter the essential use of sun protection especially for those CLL’ers on BTK’s.
Newdawn, that's right. None has proven cause and effect. On the other hand, is there a study proving that it was Sun exposure that started a melanoma? Can such thing be proven at all?
I think scientific scepticism can be taken too far sometimes Leo. Some things are really quite obvious which is why I don’t ‘toast’ my melanoma scar in the sun for 20 mins a day! 😳
It's not scepticism. It's applying the same standards to those who say it was Sun exposure that caused a melanoma. It's been repeated so many times everybody takes it as fact but its not. Just a reminder,I spoke about healthy people taking a 4 times weekly 20 minute full body exposure. Now I'd like to see a study that proves it's dangerous. No, humans are Not that fragile. Cancer patients are a different story, naturally. Nice weekend to you too.
Five to ten percent of cancers are most definitely genetic diseases, including up to 10% of CLL cases, which are specifically designated as familial: ncbi.nlm.nih.gov/pmc/articl... The risk of CLL development is well known to be higher in Ashkenazi Jews and the genetics of CLL is also known to be different in Asians, where the incidence of CLL is a fraction of that in Caucasians.
So 50 years of cancer research has clearly identified genetic predispositions that put those carrying them at known risks of developing specific cancers, including CLL. With my emphasis- "Inherited genetic mutations play a major role in about 5 to 10 percent of all cancers. Researchers have associated mutations in specific genes with more than 50 hereditary cancer syndromes, which are disorders that may predispose individuals to developing certain cancers."cancer.gov/about-cancer/cau...
Natural selection does not eliminate those carrying a genetic predisposition to cancer, when the cancer typically occurs AFTER cancer causing genes have been passed on. With the median age of diagnosis for CLL being 71, there is negligible natural selection to eliminate any genetic predisposition towards developing CLL.
With respect to immune system surveillance of incipient cancers, we know that CLL drives T-lymphocytes into exhaustion, which is thought to be why those with CLL are at higher risk of cancers - skin cancers in particular, where our risk has been found to be up to ten times higher than normal.
Vitamin D serum levels are known to be lower in lymphoma cases, including CLL, but the etiology isn't known - yet. Mayo Clinic are running a clinical trial based on the findings of this study: ncbi.nlm.nih.gov/pmc/articl...
Thank you, the reasoning is clear, I trust your word without checking the references It was in a different sense that I used the wasted 50 years and not genetic disease term. Are patients that were genetically predisposed to cancer treated differently from those who acquired it randomly? Or do they go through the same chemo and radiation therapy? Can a person's cancer be prevented knowing he has a genetic predisposition to it? (yes, the way Angelina Jolie did it but that's the exception to the rule, right?). I meant to say pursuing the genetic line is not going to help prevent or treat cancer because once a solid tumor develops inside of it there can be thousands of random mutations and its not possible to kill the cancer by studying genetic changes inside it. That's why 50 years and hundreds of billions led nowhere and nearly 2000 Americans die of cancer daily. I'd bet my house that going this route it will still be as untreatable as it is today 50 years from now.
LeoPa, I strongly recommend that you read "The Emperor of all Maladies".
Pursuing the genetic line most definitely provides huge benefits in cancer research. Just ask all those with CML, where research into the cause of this blood cancer identified the common genetic error, which is blocked by the first successful cancer inhibitor drug Imatinib (gleevec). That genetic discovery and resulting successful drug development converted a CML blood cancer diagnosis from a short to near normal life expectancy. It's covered in the aforementioned book.
Started reading your copy of The Emperor of all Maladies" yet? I put off reading it for a while, because I felt it could be too confrontational, but it really does put into perspective the full history of cancer research, along with easily readable explanations of how and why cancers form.
Further on the genetic influence question:Mayo Clinic study finds 1 in 8 patients with cancer harbor inherited genetic mutation.A genetic mutation can cause a gene to malfunction and lead to a cell becoming cancerous. Although many mutations that cause cancer happen by chance in a single cell, the study confirms that nearly 10%–25% are inherited mutations that set off a cycle of events that can lead to cancer.
A strong cognizance of germline testing is becoming increasingly important in the field of oncology, across an array of tumor types, according to Mark E. Robson, MD, who also emphasized the critical role of genetic professionals in terms of interpreting assay results during the 38th Annual CFS® virtual conference.
Genetics professionals continue to play a critical role in variant interpretation [and in making] recommendations for non-therapy–related actions, such as screening and prevention-related actions. With cascade testing, we could maximize the benefits for the family as a whole. The models that do not fully incorporate genetics professionals into this process are unwise and are certainly not taking full advantage of the information that can be provided.
The genetic influence in cancer in recent years has actually resulted in the development of a new path in cancer research that will provide improved outcomes for patients. Historically, we referred to cancers based on where they occur; breast, lung, skin, kidney, lymphocytic and so on. By looking at the underlying common genetic cause for 'different' cancers, drugs for a specific cancer can be found to 'unexpectedly' work well in entirely different cancers where there's a common genetic basis.
I’m a casual observer here, although may be here more frequently as my 67 yr. old husband will start CLL treatment next week, 1 year after diagnosis. (He also, as of today, is a 5 year esophageal cancer survivor after chemo, radiation & esophagectomy & has MULTIPLE, MULTIPLE skin cancers.)
Anyway, your mention of The Emperor of All Maladies caught my eye. I so enjoyed the book for all its rich history, explanation of research, funding, search for a cure, window into the future and main message of prevention.
I just thought I’d drop you a line to say that I always stop to read your posts as I scroll through and to recommend a few other “medical” books that chronicle the fight against disease. All of them are stunning reads:
Polio - An American Story - David Oshinsky
The Great Influenza - John Barry
And the Band Played On - Randy Shilts
The Immortal Life of Henrietta Lacks - Rebecca Skloots
I got a copy already, it's next on the reading list 😊. 552 pages.. . It looks interesting and hopefully pulls me in and if it's more enjoyment than education it won't take that long.
Perhaps the following will encourage you to reconsider your statement that "It's impossible to connect any specific mutation with any specific cancer. They are random. 50 years of cancer research led to nothing, because cancer is not a genetic disease. People are dying by the thousands every day, because the whole field is simply looking the wrong way."
‘Tour de force’ study reveals therapeutic targets in 38% of cancer patients
“The bottom line from this report is that next-generation sequencing is an efficient way to identify both approved and promising investigational therapies. For this reason, it should be considered standard of care for patients with advanced cancers”
From the USA's National Institutes of Health Cancer Statistics - Surveillance, Epidemiology, and End Results: seer.cancer.gov/statfacts/h...
Using statistical models for analysis, age-adjusted rates for new cancer of any site cases have been falling on average 1.1% each year over 2008–2017. Age-adjusted death rates have been falling on average 1.7% each year over 2009–2018."
The SEER site allows you to investigate cancer statistics for all cancers and many individual cancers, including CLL/SLL, going back decades.
Your words which I quoted are commonly used by alternative cancer treatment sites, ironically with no evidence, in an effort to encourage desperate people to try treatments for which there is no reputable evidence.
Thank you, interesting articles. But those findings do not change the fact that advanced cancer is mostly still incurable and metastatic cancer too. If they don't cut it out in time then we can use whatever type of therapies we want the patient is in trouble. Nothing but screening and early detection helps. And lifestyle factors of course. There's much promise in all this genetic research but that was always the case and always will be. But will these be able to cure patients? I have my doubts. Of course those who make their living in the research field have a motivation to always present their findings as promising. But till there is tangible proof I have no reason for much optimism. As far as cancer prevalence and trends go, it's hard to find cause and effect.
You have a point that a bit of sunlight is necessary and can do us good. But I do NOT believe medical advice to cover up and use high factor sunscreens does more harm that good. I suspect that advice has saved many lives and I don’t think we should ignore it.
Agreed that melanomas can develop in skin areas where the sun never shines, but likewise lung cancer can appear in non-smokers but it doesn’t mean lung cancer is not usually caused by smoking/smoke inhalation. I realise that isn’t a perfect comparison, as a bit of sunshine is good for us whereas no amount of smoking is ever good, but the principle is still there.
As you say, it depends on our complexions, seasons of the year and time of day, but I try to err on the side of caution as it’s all too easy to burn. (Like Newdawn, I’d be very wary of 20 minutes full body exposure, 4 times a week.)
CLL folk having treatment, including Ibrutinib, are particularly susceptible to skin burning, rashes, and other problems with sun exposure. I’ve been on Ibrutinib for 3 years and ever since starting it, I’ve had to avoid sunshine as much as possible, as not only does my skin soon go red, but I get headaches and become very nauseated and brain-fogged. The symptoms often last for several days after the sun exposure.
Paula, of course. That's why I wrote about healthy people. There are other ways to make sure one has his vitamin D levels adequate. It's just one of the limitations CLL patients have to live with.
Sunscreen negates the effect of sun exposure, so for healthy people not needed (CLL patients are a different topic of course) if they don't overdo it. There is no universal rule as to how much is ok because there are too many variables. An equatorial African needs more than a milky white Briton ( with me falling somewhere in between 😁 but much closer to the Briton ) . And of course the 11Am to 3PM rule also depends from the geographical latitude, and which hemisphere is it. Plus the season of course...
"Sunscreen negates the effect of sun exposure, so for healthy people not needed (CLL patients are a different topic of course) if they don't overdo it. There is no universal rule as to how much is ok because there are too many variables." I doubt that you would find dermatologists who would agree with this statement. I know many "healthy people" who don't overdo sun exposure and do use sunscreen who, in spite of that deal with skin cancers.
Or maybe exactly due to it. Sunscreen has its own toxic effects and Sun avoidance to the extreme is just as harmful as sunburn. I would not rub chemicals into my skin and wouldn't advise anybody to. What sunscreen does is it prevents the reaction of the skin to the sun exposure, hence no sunburn. But it does not prevent UV rays from penetrating the skin and doing damage. So people spend hours in the sun, all screened up thinking they are protected! I take my moderate exposure without sunscreen and cover up! Because I have an active feedback. I must know how much is enough or I get burnt. Dermatologists are good for identifying problems but preventing them? Not so much. The mantra of " Sun avoidance is good" which seems to be generally accepted as truth did not help to reduce skin problems, did it? I believe it helped to exacerbate lots of other problems like osteoporosis, especially in post menopausal women. Thanks to vitamin D deficiency. The everything in moderation mantra touted by those not being able to give up high carb junk does not apply for sun exposure? Here we are ready to go to extremes? Well, I believe that moderate sun exposure is healthy, sunscreen is not (just cover properly up, long sleeve, straw hat, face mesh, whatever) and eating junk isn't healthy either. Not even in moderation.
You may not advise others to use sunscreen LeoPa but we need to take our advice from credible, professional scientific sources on here. This sounds like balanced advice to me that recognises the concerns you outline;
I forgot, reg. the generally recognised as safe stuff. So is genetically modified soy, corn and high fructose corn syrup, crisco etc. But I avoid those things too.
SNIP There are approximately 500 times more UVA rays in sunlight than UVB rays. Therefore, in addition to protecting your skin from the effects of UVB rays, it is also very important to protect from the damaging effects of the more numerous UVA rays. Traditional chemical sunscreen products have been more successful at blocking UVB rays than UVA rays.
UVA radiation makes up 95% of the all the UV rays that make it to the Earth’s surface. UVA penetrates deep into our skin and can even pass through glass.
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UVA damages your skin, resulting in a tan. It is the primary radiation used in tanning beds. It causes almost all forms of skin aging, including wrinkles. UVA damages the collagen and elastin in the skin and also generates free radicals.
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And recent research shows it doesn’t end there.
“UVA partners up with UVB to cause more serious problems, like skin cancer,” says Saira George, M.D., a dermatologist at MD Anderson Cancer Center.
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What is UVB radiation?
UVB radiation makes up only 5% of the UV rays from the sun, but it is very high energy.
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“UVB does not penetrate as deeply as UVA, but it can wreak havoc on the top layers of your skin.” George says.
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UVB damages skin cells and causes DNA mutations that can eventually lead to melanoma and other types of skin cancer.
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UVB radiation from the sun also can cause cataracts.
Cataracts happen when proteins in your eye lens get damaged. The proteins start to collect pigments that cloud your vision.
Hi Len, thank you for the added details. If chemical sunscreen blocks most of UVB but little UVA then what I wrote is correct, right? I edited the UV part accordingly. People use sunscreen then feel protected and take more exposure than they would knowing that they are not protected and have to be cautious. I see this frequently during seaside holidays. People use sunscreen then they lie all day toasting themselves on the sun. I take my half hour of sunbath and then hide in a shade or dress up. I never get burnt despite not using sunscreen.
While I would agree that using sunscreen and toasting all day in the sun is dangerous. My point is that using your "half an hour" and "not getting burnt" is also a dangerous method to get enough D3.
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Blood testing and supplementing with cholecalciferol-D3 to titrate to mid range of recommended levels is my preference.
And for my psoriasis like skin problems the most effective treatment is phototherapy with a controlled amount of UVB exposure. I know that that will raise my risk of future skin cancer, but both my D3 and UVB are controlled by medically reliable means.
Hi Len, sure, you have your reasons to go for the choices you do and if they suit you, perfect. I disagree about the half an hour being dangerous but we don't have to agree to be on good terms 😊 Medically reliable means were not available till very recently and people had less skin cancer than they do today. Perhaps moderate sun exposure had the same benefit for them. My grandparents worked the fields all their lives and did not get skin cancer. Sure, they covered up because they did not want to get burnt but they did not consciously use sunscreen or avoid the Sun.
Timely post. What follows is a practical example of skin cancers in a CLL patient with a compromised immune system.
I am a 77-year-old American male with fair skin who spent a lot of time outdoors in a well spent youth. My CLL is indolent but my immune system is seriously compromised. I started using sunscreen and wearing wide brimmed hats about 30 years ago, sunblock shirts 10 years ago. But I still wear shorts all summer and still drive a convertible. After a recommendation from a dermatologist at Dana Farber I started taking nicotinamide last year; see ncbi.nlm.nih.gov/pmc/articl....
My history of skin cancer
Malignant melanoma in situ, left temple 2013
Squamous cell carcinoma MOS surgery on left leg Oct-29-2018
Squamous cell carcinoma in situ right leg Dec-4-18
Squamous cell carcinoma in situ left leg Jan-4-19
Squamous cell carcinoma MOS surgery on right leg Jun-29-20
Last week I saw my local dermatologist so she could determine whether a previous MOS surgery open wound had healed properly. The healing had gone well, she then conducted a full body skin check. Long story short, the full body inspection included six shave biopsies on suspect locations on my arms, face, scalp, and back. Monday, she called with the biopsy results, four new squamous cell carcinomas and one melanoma; five out of six biopsies were positive. She also supplied the detailed pathology reports and made recommendations for immediate attention to the melanoma and two MOS surgeries on my face and scalp. I was stunned, and spent the day wallowing in anxiety, then started making appointments to deal with all of this.
Melanomas can be very serious and need to be dealt with quickly. Squamous cell carcinomas are slow growing however they can metastasize in nasty ways if ignored.
The four different dermatologist I have seen in the past two years say the damage to my skin was done years ago by sun exposure and my weakened immune system can no longer suppress the cancer growths.
What I now have to do: be more careful about sun exposure, have dermatology visits every six months, accept the results, do what needs to be done, and move on.
For vitamin D, some short exposure of torso may be useful. To avoid adding more exposure on the face, there are "sun masks" which are very comfortable.
Like SlowCLL, I too have had a number of BCCs and SCCs cut out. Most of them looked quite different from the photos in the link above. So the message is, don't try to diagnose a skin lesion yourself from photos, get a specialist to examine it and do a biopsy if suspicious.
And don't hang around - SCCs in particular can be very aggressive and fast-moving in people with CLL.
Pardon my short cut use of a commonly used label for people of European origin, many of whom also live in the USA, Australia, South Africa, New Zealand and elsewhere outside of Europe.
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It was in a different sense that I used the wasted 50 years and not genetic disease term. Are patients that were genetically predisposed to cancer treated differently from those who acquired it randomly? Or do they go through the same chemo and radiation therapy? Can a person's cancer be prevented knowing he has a genetic predisposition to it? (yes, the way Angelina Jolie did it but that's the exception to the rule, right?). I meant to say pursuing the genetic line is not going to help prevent or treat cancer because once a solid tumor develops inside of it there can be thousands of random mutations and its not possible to kill the cancer by studying genetic changes inside it. That's why 50 years and hundreds of billions led nowhere and nearly 2000 Americans die of cancer daily. I'd bet my house that going this route it will still be as untreatable as it is today 50 years from now.
CLL / Skin Cancer - getting it checked in the UK
CLL and skin cancer
Skin Cancer and Surgery 
Ibrutinib / imbruvica skin cancer
CLL and Skin Cancer
