Hydroxy and The Sun

[AgnethaF]

Hello everyone. I am newly diagnosed and still in denial that I am that special 1 in 100,000 - like many of you - with ET. I started hydroxycarbamide a week ago - so far so good (apart from insane fatigue!). I understand my skin will be more sensitive and that I could be more susceptible to skin cancer. Does this mean I need to slather on factor 50 even if I am just pegging out the washing? Or does it mean that if I am in the sun for a period of time e.g., on holiday, then I need high factor sun lotion (which I always use anyway), must stay in the shade and wear head to toe protective clothing? Or provided I have high factor sun lotion, could I wear swimwear so long as I stay in the shade? Can you swim in the pool/sea provided you are wearing a high factor? Of course, I do not want to risk skin cancer but would be good to get an idea of exactly how I manage the sun - as I don't want to become nocturnal! Many thanks to anyone who takes the time and trouble to respond. Best Wishes

[Mostew]

Glad you found This forum . It’s a mine of good info. And lovely folk.

I know just what you mean about the sun.

We will all do things differently.

It’s taken some time for. Me to get used to even using cream . Never did before taking meds a few months ago.

My advice would be to keep using high factor cream , wear a sun hat and don’t sun bathe . If there is shade sit in it but don’t worry for short periods.

Swimming is fine . We need To enjoy life.

Pop hat on while pegging out washing .

I suspect we can do more harm than good by being obsessed with staying out of sun obsessively!

Warm wishes to you

Carolyn

[Otterfield]

Don't overthink it. Just use sun cream and live your life.I had a couple of holidays on Greek Islands when I had ET and was on Hydroxycarbamide. No problems at all if you take normal precautions.

[AgnethaF in reply to Otterfield]

Thank you so much for your reply. You say you 'had' ET - may I ask if you still have it now?

[Otterfield in reply to AgnethaF]

I progressed to MF I'm afraid and am having a stem cell transplant.

[AgnethaF in reply to Otterfield]

Wishing you all the very best for your treatment.

[Otterfield in reply to AgnethaF]

Thank you

[hunter5582]

Hello and welcome to the forum.

As out friends suggested there is not reason to be excessive in caution with sun exposure. Just use a bit of caution and avoid overexposure, Sun screen is a good idea when you re going to be out for much time.

Since you are new to hydroxycarbamide (aka hydroxyurea) there is some information to know about it. Unfortunately, some of this is not always given to patients,

drugs.com/monograph/hydroxy...

online.epocrates.com/drugs/...

oralchemoedsheets.com/sheet...

ethrombo.blogspot.com/2017/...

All the best to you as your start on this journey.

[AgnethaF in reply to hunter5582]

Thank you so much for your reply and for all the very useful information.

[Rem31]

It may be best to follow your haematologist guidance as they will have seen a history with their hydroxycarbamide patients and will know you.

I’ve taken hydroxycarbamide for 9 years, not a high dose but I have Type 1 skin and lived many of my much younger years in a sunny climate. Recently I had a SCC removed from the back of a hand and it required a largish full thickness skin graft which is taking a while to heal.

It’s been a shock as I believe I’ve always been very cautious in the sun and I’m in no doubt hydroxycarbamide, along side my skin type, has had much to do with it.

[Grum1]

I am on HU and now live in an Australian coastal town and we also have a pool. Thus I use 50 SPF daily, wear a sun hat and both short and long sleeved swimwear. I do try to avoid outdoor swims and walks during the hottest part of the day. 18 months after starting HU I had an SCC excised from my nose with the incision approximately 2.5cm long. Yes, I was a 1970’s teenager when sunscreen was not heard of, but coconut oil was. My skin is now showing all the signs of sun damage. Just be sensible and take sun protection measures… but you also have to balance this with enjoying your life and outdoor activities. Good luck

[AndyKay]

Hi. I'm so glad you brought this up. I was very skeptical about staying out of the sun after I started taking Hydroxy. I live in New Mexico and we have a lot of UV rays. We have very few cloudy days. When my doctor told me to stay out of the sun I was a bit upset because I loved to walk everyday. He told me that I could only be in the sun for 15 minutes, long enough to get out my car and go inside a store. Recently I have started purchasing UV protected clothing so hope this helps me to be outside a little more.

[Tyray123]

Thank you for your post AgnethaFas I was diagnosed June this year with ET & Jak 2

and though I have stayed out of the sun here in the South East UK

I was wondering myself, how much sun you can have and stay safe from skin cancer

So thank you

and thank you to everyone who replied

Your answers have helped me too

X

[KLCTJC]

I am a dermatology PA. Medications like hydroxyurea puts you at higher risk for skin cancer. This risk increases after 8-10 years. Sun exposure is cumulative so sun you got when you are younger can still affect you. My advice is live your life and enjoy but when outside wear sun protective clothing, hats and I usually recommend 50 or higher SPF. And you should start having regular dermatology visits. And the longer you are on it the higher the risk. So they may want to see you every 6mos. This med like many others increases you risk for non melanoma skin cancers. Just like transplant patients and many others that take similar drugs, even meds like humira. So my advice is be more conscious but live your life! I tell my patients go out looking like a bee keeper! Wide brimmed hats are super important. I hope this helps!

[nightshadow]

Southern California chiming in here. I bought and have made several poncho like garments made of either UV protected cloth or natural materials that have some degree of UV protection (silk is fairly high). I work as a gardener so am in the sun alot and having the loose cover keeps me cooler than the long sleeved shirts. I also added buttons at the neck line so that I can shorten up the arm area when I go indoors to help cool down. I also make sure that my hat has a cover for the back of my neck.

But sunscreen is still critical. I have used more sunscreen since diagnosis 2 years ago than I have in my entire life. 🙄

[Janis12]

Hi, I am in the UK and have taken Hydroxy for just over two years now. I lead an outdoor life being a cyclist, walker and equine person. I have never been a sun worshiper or used sun beds but I have recently noticed sun damage on my forehead for which the dermatology dept prescribed a cream to treat. Many of my cycling and farming friends have sun damage and skin cancers and they do not take Hydroxy. I use factor 50 everyday to go out both summer and winter and it has been hard to find a brand which does not give you a white hue when wearing it. P20 is good but it stains your clothes yellow which does not come out. I get Uvistat factor 50 prescribed by my GP because of my medical need (so that cuts the costs down) and also vit D to compensate for the constant use of sun block. If I go out for the evening with friends and I wear make up I do not put any sun bloc on. I try to wear a hat with a brim when out walking or in the garden working and always wear a cap with a peak under my cycling helmet. I raised my concerns with the dermatology nurse and she told me to live my life, wear the shorts and just put the cream on. I have also purchased some outdoor clothing from Mountain Warehouse which was reasonably priced. Initially I panicked but now I just use my common sense and keep an eye on any skin changes (not easy when you live alone). There is no system where I live in Newcastle for a regular dermatology review because of overwhelming the department so it is pretty much up to the individual to 'be on guard'. it's a true saying 'worry yourself to death', don't do it just be sensible. ps. I also bought a handbag umbrella with uv protection which I used when attending an outdoor lunch time concert, I was not alone!!

[Aquinas in reply to Janis12]

Thank you for your post, which I found especially helpful. I live in N. Wales and medical access/ help from any G.P. is sparse to say the least. My own local medical centre is served exclusively by locum doctors and one never sees the same one twice, ever.

[EPguy]

I was just at Derm yesterday. He said it takes many years on HU to make trouble, as KLCTJC noted here. I noticed more skin activity since being on it for just a year, but Dr said that is coincidence. I'm olive skinned so not extra risk, but less risk is always better.

I figure more protection when on HU is a good policy. But HU is not usually associated with the most serious skin category, melanoma.

I'm now on Besremi so I won't get to test HU long term.

[ainslie]

You’ve had some great replies already, I am in Scotland and I am on Rux and have fair skin. My dermatologist suggested I wear factor 30 in winter and 50 in summer. I wear a sun hat when out most of year, never sit in sun, in shade or under umbrella, on holiday long sleeves UV protection shirts but still under umbrella.I bought a UV meter to monitor level of UV. One thing to watch is temperature and UV do not correlate, eg, the temp in the canaries is roughly 23c in winter and the peak UV is approx 4. In the summer it can be 28c temp but UV can be 13 which is extremely dangerous. UV levels is shown on iPhone . One of the sunscreens my dermatologist suggested was La Roche Posay. I use the fluid one in the range Anthelios UVMUNE 400,

50+. It dries quite well and doesn’t look white.

My only slight concern is we are rubbing chemicals in to our skin which will go in to blood stream, who knows if that is harmful. Hence I tend to cover up and only put lotion on what I can’t cover. If I am out for 10 mins in Scotland I just put a hat on, if I do put lotion on , I wash it off in the evening once back in out of sun so I am not absorbing it all night. It’s a hassle but no skin probs yet and that’s after 10 years of daily UVB for itch. My mother died of melanoma spreading to brain which I unusual but it should be taken seriously.

[Mostew in reply to ainslie]

There are some natural sun creams . I agree all the chemicals can't be any good