CLL Global Alliance January Newsletter - CLL Support

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CLL Global Alliance January Newsletter

AussieNeil profile image
AussieNeilPartnerAdministrator
7 Replies

This newsletter contains the following CLL Global Alliance Meeting Highlights, which I'm sure will be welcome news to us all!

"On January 15-16, 2016, CLL Global hosted our semi-annual Alliance meeting in Houston, Texas. The Alliance meetings provide a unique opportunity for the unhindered exchange of ideas and the development of collaborations among CLL experts from around the world. The focus of the January meeting was "How can our research accelerate the cure of CLL?". Included in the meeting were sessions on immunology, genetics, pathways and signaling, drug development, the complexity of the "stromal jungle", and how these topics relate to CLL. Presentations highlighted several areas of relevance to CLL, including:

1) the role of viruses in cancer

2) the recognition of the importance of what was once called "junk" DNA in regulating normal and abnormal cell function

3) the recognition of the ever-increasing complexity of the immune system, how it prevents cancer, and how cancer evades it

4) the development of novel targeted therapies that are revolutionizing treatment options for high-risk and relapsed/refractory CLL patients, and

5) other cancers, including melanoma and non-melanoma skin cancers that are prevalent in CLL patients, as well as mutations that are associated with disease clusters.

The meeting ended with an exciting discussion of the development of vaccines against cancer that have the potential to transform treatment options in much the same way monoclonal antiboides have since the advent of rituximab."

Interesting articles from previous newsletters are available from the CLL Global Tidbits archive page:

archive.constantcontact.com...

Those interested in receiving this newsletter can join the mailing list by clicking on Join our Mailing List! at the bottom of the above page.

Neil

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AussieNeil profile image
AussieNeil
Partner
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7 Replies
David73 profile image
David73

Having had a small cancer removed from my lip, squamous cell and basal cell melanoma treated I've wondered if CLL is linked to skin cancer. Or maybe too much sun exposure can be a CLL trigger. It's pure supposition I am totally non-technical just interested in the phrase above "skin cancers that are prevalent in CLL patients".

AussieNeil profile image
AussieNeilPartnerAdministrator in reply toDavid73

Hi David,

CLL protects itself from our immune system and in doing so, makes us at higher risk of a range of secondary cancers unfortunately. We are reportedly at an 8 fold greater risk of skin cancers, so need to take extra care not to over-expose ourselves to the sun.

Neil

Cllcanada profile image
CllcanadaTop Poster CURE Hero in reply toAussieNeil

Much of the sun damage was done years ago when we were younger and you can certainly have skin cancers were the sun has never shined, if you get me...

A recent study at the Mayo has found high rates of CLL patients had or developed skin cancers during the study, so surveillence for skin cancers in CLL patients is manditory...

In conclusion, we documented a low compliance with guidelines to screen for skin malignancy in a community-dwelling cohort of patients with newly diagnosed CLL. Of the patients who underwent full-body skin examinations within 6 months of their diagnosis of CLL, 22% were found to have an active malignancy of the skin, and 21% of patients with CLL had developed a malignancy of the skin by the end of the study.

Referrals for screening skin examinations at diagnosis in patients with CLL could have an immediate impact for this at-risk population. Standardized and systems-based approaches are likely to increase compliance with skin cancer screening guidelines in patients with CLL.

jop.ascopubs.org/content/10...

~chris

helenolton profile image
helenolton in reply toCllcanada

Mayo Clinic also says that we need Vitamin D. The people with low vitamin D were more likely to need treatment. I lay out for 15 or 20 minutes in the spring and summer. Sometimes it is so confusing on staying healthy during the Wait and Watch.

Thanks

Helen

Hershey profile image
Hershey in reply tohelenolton

Helen,

Laying out in the sun might not be advisable due to the risk of inducing a skin cancer. As noted above, we are certainly at risk of ultraviolet light induced damage. Furthermore, it is now known that the prior recommendations for 15-30 minutes of sun exposure are far inadequate to achieve adequate 25-OH D levels especially given skin coverage by clothing. Finally, with aging our ability to synthesize vitamin D in the skin wanes. So it really is best to supplement with vitamin D3.

The amount that one needs varies widely in part due to skin pigmentation, the rather involved vitamin D pathways which are more complicated than previously thought and which link into cholesterol metabolism, and are impacted greatly by genetic variability.

Fortunately, a simple 25-OH D level will provide dosing guidance. For every 1,000 IU of D3 the serum level should increase by 6-8 ng/ml. For those in Europe that would need conversion to nmol/L I believe.

Cllcanada profile image
CllcanadaTop Poster CURE Hero in reply toHershey

Yup.. simple blood test... while you are at it get your B12 and folate levels checked.. surprising how many people blindly supplement without these tests as a guide...

Newdawn profile image
NewdawnAdministrator

I absolutely agree with the points Chris makes about prior sunburn reactivating in later years in CLL. I remain convinced that's what happened to me. It's why I'd urge people not to be take false reassurance in the fact that they're now 'sun savvy'. Whilst that's vitally important, I'm convinced DNA changes resulting from sunburn in my teens may have caused my malignant melanoma once I'd been dx with CLL. I've never been a sun worshippers and haven't been in a tanning booth in over 35 yrs (and then only twice!).

As it's known CLL'ers are at much greater risk of skin cancer, it seems obvious that a weakened immune system has compromised surveillance and is unable to eliminate damaged cells and to defend the body as effectively, resulting in a larger number of malignancies. It must surely follow that this must extend to other skin conditions reliant on robust immunity?

CLL'ers don't routinely receive skin screening but I believe they should.

Just a little reassuring note to David. You mention having both basal and squamous cell skin cancers but thankfully they're not actually malignant melanomas (though serious enough and can turn messy).

Newdawn

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