CLL and skin cancer

[kitchengardener2]

The CLL webinar yesterday was all about various skin cancers and early warning signs. With blood cancer, we are more vulnerable. It was very interesting with different people discussing the treatment they had had. Something which came out was that it's important to obviously get treatment quickly but also to watch more carefully any incidences near our eyes. One lady had had a melanoma removed very close to her eye and now her vision was really bad, something to do with the nerves being damaged. Another man said that his eyes watered more after his surgery. There was a discussion about summer and what was best to wear. Obviously we must use high factor suncream but covering up is also important. Personally, I wear long sleeved cotton garments and a hat but keep out of the midday sun.I think the recording may be available later and really worth watching.

[Jetliz]

Thanks for that information very valuable will look out for it! I highly recommend a Sun Block umbrella we walk a lot like yourself and it completely protects you obviously in addition to creams and long sleeves etc. I bought it from Amazon and its been priceless especially when it's very warm it keeps you constantly sheltered from direct sun. Couldn't do without it but still avoid midday sun when possible.

[Vlaminck in reply to Jetliz]

Yes, an occasion for a parasol!

[AnneeNor]

thanks will watch this when published

[kitchengardener2 in reply to AnneeNor]

Worth signing up to the Leukaemia Care webinar service, I get a lot from them.

[mrsjsmith in reply to kitchengardener2]

Alice agreed and I found the advocacy very helpful when I needed advice.

Colette

[venturak in reply to kitchengardener2]

Where can I sign up for the webinars?

[kitchengardener2 in reply to venturak]

If you go to the Leukaemia Care website you should be able to join and then they will send you emails etc. A very useful resource.

[StAsaph47]

Good quality sunglasses are also important, even in the winter sun. 3 years ago I experienced frequent ingrowing eyelashes on a lower eyelid and eventually a basal cell carcinoma on the eyelid was diagnosed and successfully removed.

[CLLerinOz Administrator Volunteer in reply to StAsaph47]

A very successful sun protection public awareness campaign in Australia used the slogan "Slip, Slop, Slap". It's recently been updated to become "Slip, Slop, Slap Seek and Slide" and the Slide picks up on your point as it refers to wearing sunglasses.

The five protective measures of Slip, Slop, Slap, Seek and Slide are:

- Slip on protective clothing that covers as much skin as possible

- Slop on sunscreen with a high SPF

- Slap on a hat that has a broad brim

- Seek shade and

- Slide on sunglasses; close-fitting wrap around ones are best

Now, a new app has been released by SunSmart which tells people, depending on where they are in the world, what the sun's UV rating is at a particular time of the day at that location and what times of the day protection is recommended. During those times, people are advised to follow the 5 steps above.

I don't know if the app can be downloaded by those outside Australia but here's a link with more information:

sunsmart.com.au/about-sunsm...

youtu.be/Uy6_csWyYL4(Not working as expected?)

[kitchengardener2 in reply to CLLerinOz]

That's brilliant, will see if we can get it in UK.

[CLLerinOz Administrator Volunteer in reply to kitchengardener2]

🤞

[Kmegood in reply to StAsaph47]

Yes I had basil cell on eyelid removed around 2 years ago that was positive. 4 days later had reconstructive surgery on the eyelid. I was uncomfortable for at least a year then had 2 cataracts done last year. So now my vision is very good but sensitive to indoor florecent lights so I wear sunglasses just to cut down the glare. This past 6 months had something on top of my arm which became itchy. After a second visit to my dermatologist he had it cut out and few days ago got a call from the hospital to tell me it was cancer but since it was removed not to worry. So all I can say now is when you have CLL expect to have skin cancers happening but not all will be positive.

[kitchengardener2 in reply to Kmegood]

It was an incredibly useful webinar and made me aware of things that I wouldn't otherwise have thought of. I strongly recommend joining Leukaemia Care and making use of their services. I volunteer as a Buddy and really enjoy my chats with a lovely lady. I would also ask people to join in with the annual Spot Leukaemia campaign.

[Rocky0181]

Hi, that was very interesting to read. My husband has CLL and is about to start treatment. He also has had quite a few melanomas removed. He now has one on his eyelid as well as one behind his ear. He is waiting to have them removed. I think I will now get him to call his consultant and try to bring his appointment forward. Thank you for posting.

[Sunshine2422]

when I was reading information on some of the treatments, some said that your skin would be checked during treatment. Don’t know if this is being done ?

[kitchengardener2]

My skin has never been checked. I had a suspect mole,which thankfully turned out to be just that and nothing nasty. Hope you're ok. Alice x

[Pinkcar]

Thank you for that information, I'll look out for the publication. Off to hospital on Wednesday for suspected SCCs. Had a couple of BCCs in the past and do try to avoid the sun/wear hats/cream. I suppose some damage done in our youth!

[kitchengardener2 in reply to Pinkcar]

Yes quite, we never had suncream as children, just calamine lotion when we got burnt. As a teenager we plastered coco butter on to get a tan ..... oh the horrors!!

[Sandlot]

My CLL has unfortunately shown up as bumps under my eyes. I was able to somewhat level them out with a cream from my dermatologist, Tacrimolus. My oncologist checks them every time I have an appointment. These bumps are misdiagnosed frequently as cholesteromas.

[Mochachino]

is the webinar series for CLL available in Canada? Do you have a link to register?

[kitchengardener2 in reply to Mochachino]

Really don't know but I imagine if you contact UK Leukaemia Care, they should be able to advise you. I join in with anything and everything to gain knowledge.

[Mochachino in reply to kitchengardener2]

Thanks for that suggestion. I will reach out to UK Leukaemia Care

[LadyLuckyLuna]

Thanks for this post. I've long dealt with facial solar keratoses with liquid nitrogen, Efudix, etc. & now have frequent suspicious spots in areas sunburned in my youth.

I heard 5-10 years ago about an eggplant-based, non-melanoma, skin-cancer treatment developed in Australia—it's finally available over the counter (!) and online as Curaderm BEC5 cream (called Zycure in U.K.). Quite expensive though probably good.

Luckily I found this nurse's blog on making an easy eggplant tincture with apple cider vinegar. Sounds too good to be true but it's worked well. I've dabbed it carefully around my eyes when my skin is dry. I'm sure it's more high-maintenance than Curaderm, but a lot cheaper. Here's the blog post, followed by good comments. Following that is an Irish site explaining Curaderm, including a video by the people who developed it.

vanessamarsden.com/2017/05/...

cancerireland.ie/tests-and-...

[kitchengardener2]

Thanks for that information, I will read and digest it.