Some clarification on just how much cover I need from the sun please?

[Pachena]

Hi, I know that that Hydrea says to keep protected from the sun tho I wondered to what extent.

I’ve seen on this forum that some people completely cover up with sunscreen any time that they are outside.

I know that having the sun on your skin also has health benefits and the nurse at our doctors practise here in Queensland, Australia, said just be careful not to get burnt. She said time in the sun is important and the best time is between 10am-2pm.

I wouldn’t stay in the sun for hours without protection and in summer wear long sleeves and always a hat all year around.

I have a tan just from my walks and I don’t sun bake.

I just wondered if my skin is more vulnerable to burning now I’m on Hydrea or is the importance on just not getting sunburned where I will increase my risk of skin cancer with Hydrea? I know burning will increase my risk of skin cancer.

So just wondering how others manage the benefits of the sun and avoid the risks ☺️

Thank you 🌸

[ainslie]

Hydrea and sun will increase risk of skin cancer, if in doubt consult a dermatologist who understands hydrea. My expert dermatologist told me factor 50 in summer and 30 in winter but I am in Scotland where the UV is max 6 for a few months in summer and near zero the rest of the year. I cover up plus hat when out in summer. I keep my Vit D up near max by taking 4000iu per day. Sun may have benefits over taking Vit D but I haven’t seen that evidence to date, anyone?. I have a UV meter to check how high it is on holiday, what most people don’t realise that temp and UV do not increase or decrease equally. The temp in winter in Spain can be 25c in winter or summer but in winter the UV max is 5 but in summer it can be 13 , ie highly dangerous. Your nurse means well I am sure but better check with a dermatologist if poss.

[Pachena in reply to ainslie]

Thank you, Ainslie 🌸

Good to know 👌🏻 I guess growing up in the sun all my life, it is easy to be casual with it. I take care not to be in the sun long enough to burn. Tho it’s good to be more aware that Hydrea will make my skin more vulnerable to the sun, therefore cover up 👌🏻and avoid any risk. Thank you for your time in replying.

[Scottishterrier]

Yes it is hydrea makes your skin photo sensitive first time I went out in it my arms blew up like balloons like puppy arms have been told to use factor fifty sunglasses and a baseball cap also wear dark colours and if you don't want to put factor fifty on arms wear cotton long sleeve shirt or blouseStay safe in sun

Scottish terrier

[Plate in reply to Scottishterrier]

I live in Texas where almost all farmers and outdoor workers wore brimmed cowboy hats. Then everyone is wearing baseball caps. The incidence of ear cancer has sky rocketed. Please keep that in mind!

[Pachena in reply to Plate]

Thank you Plate, that is right, the caps only give minimal coverage. I was googling yesterday for broad brim hats.

Appreciate you sharing that with me.

[Pachena]

Thank you, ScottishTerrier 🌸

Now I know that it’s more the HU making my skin more sensitive, I’ll be sure to take care. Rather than the length of time I’m in the sun.

Thank you for sharing with me 🤩

[April-May]

Being fair-skinned I have always had to be extra careful in the sun. Recently I became aware that clothing only gives a small amount of protection and there is a company in Australia which sells factor 50 clothing protection- has anyone heard this? Apparently skin cancer is so prevalent there. (Exchange rate not favourable to Brits) but interesting- has anyone heard of this problem?

[Pachena in reply to April-May]

Ah, thank you for bringing this to my attention, April-May 😃 You are right about Australia - ‘Australia has one of the highest rates of skin cancer in the world. About two in three Australians will be diagnosed with some form of skin cancer before the age of 70. Non-melanoma skin cancer is the most common cancer diagnosed in Australia.’

I’ve grew up in Queensland, Australia, one of the sunny states. As an adult I have spent over 20 years in Victoria which is like the UK, so I missed a lot of the suns rays there. It was a bonus for me as I’m the only one in my family not to yet be diagnosed with a melanoma.

I assumed wearing long sleeves was enough protection from the sun. However on investigating after reading your post above, I found out that only certain clothing is protective 😮

Thank you, I have looked up some UPF50+ brands and yes some are expensive in our money for me too 😆

I found this link which explained the subject to me. It’s from Columbia.com columbia.com/sun-protective....

Maybe their clothes are better priced for you.

I’m so pleased to be able to learn from other members here 👌🏻

[Plate in reply to Pachena]

Thanks for the link. Sounds perfect for me!

[Pachena in reply to Plate]

you’re welcome 🌸

[Wyebird]

hi having recently visited Australia I was shocked to find it difficult to get less than factor 50 sun screen. I’m the uk I wear factor 30. I love dabble shade. full strong sun I’ve found is too much. We need vit d.

So I think some weak sun is needed. Just be sensible.

I have ET.

[Pachena in reply to Wyebird]

Thanks Wyebird for replying. I too think a bit of sunshine is good for us. I wanted to be sure what the issue was before I totally blocked it out.

We didn’t realise about SPF 50+ till I read about it on here. We don’t use sunscreen really as my husband has had quite a few things cut out of his skin and also 2 melanomas. So he dodged the sun, sits in the shade and covers up with long sleeves and a hat when he walks. Gloves and sleeves when he drives, so I naturally don’t sit in the sun as I used to when I was younger. We have learnt to be ‘sun smart’ 😊

So this all is an education to me.

I did get sunburnt as a child if we had a day at the beach tho very rarely after I grew up.

I’m surprised you had trouble finding factor 30 here as it is readily available.

Thank you for your thoughts 🌸

[AndyKay]

Hello. I live in the US, New Mexico. We have lots of sunshine and UV is high. My doctor told me that I could be in the sun 15 minutes, must wear sunscreen and wear protective clothes. I try to stay protected as much as possible.

[Pachena in reply to AndyKay]

Thank you Andy, I can imagine your climate is similar to Qld. I appreciate hearing what your Doc told you. Sounds good. I was wondering if it was ok if I went to the beach and walked for a short time with my feet in the water. So it sounds like that may be possible 🤩

[AndyKay in reply to Pachena]

I wear sun screen and clothes that are UV protected plus always a hat. Just be careful and aware of the sun. Perhaps your doctor could help and give you healthy guidelines.

[Pachena in reply to AndyKay]

Thank you, AndyKay. Now I’m aware of UV protected clothes I’ll be on the look out for them. I have a Telehealth appt with my Haem in 10 days time so I’ve put that on my list of questions for her.

Best wishes 😃

[Wewo01]

I had a Heme/onc doc tell me to stay in the shade, cover up, wear sunscreen and don’t hang outside during the midday.

[Pachena in reply to Wewo01]

Thanks Wewoo01.

I’m getting the hang of wearing sunscreen everyday now. ☺️

[SueWhitt]

Hi Pachena! I'm a few years older than you, I have ET, JAK2 positive. Also in Australia. I'm a redhead but I have lived an active outdoors life with horses, gardening etc. I've had a few really bad sunburns over the years but never had more than 'a few spots' frozen off, mainly hands and forearms. I hate wearing hats and use sunscreen and make-up with sunscreen in it every day. Long sleeves if out in midday sun.I started on Hydrea a few years ago and within 3 months I had a malignant squamous cell carcinoma grow on the back of my hand ( a red spot to baked bean size within 3 weeks). Twelve months later an identical one on the other hand. Nothing nasty in the last 18 months but I have regular skin checks.

I just try to stay out of sun in hot part of the day by doing gardening and outdoor stuff in mornings and late afternoons. And I wear long sleeves (linen if possible cos it's cool) and make-up with sunscreen (shiseido makes some good ones).

A thing I find really annoying these days is my body doesn't seem to be able to regulate it's temperature any more. Once I start feeling the heat I just get hotter and hotter and sweat just pours off my face. Don't know if that's to do with ET, Hydrea or just my age!

Despite the increased risk of skin cancers, I appreciate the fact that Hydrea is controlling my platelets really well and my lifestyle is active and healthy. I'd rather have a lump removed now and then than live a lesser, sickly life.

I'm on NSW far south coast. Where are you?

[Pachena in reply to SueWhitt]

Hi Sue,

Nice to read your message. I’m sure with red hair and fair skin there is always a need to be more careful in the sun. We have 10 grandchildren between us and 4 have red fair so have learned the need for even more care in the sun with them.

Northern NSW is lovely. We live on the northern side of Brisbane. Love it here and I walk the boardwalk by the sea daily. I wear a hat tho never a sunscreen unless I’m going to out there for several hours. In the peak of summer, i walk around 5am to try to escape the heat. I’ve never had anything burnt off yet 🤞🏻Mostly I’ve worn makeup but now I’m retired, rarely until now. I was born in Atherton Northern Qld and my kids and grandkids live in the Whitsundays so i can see a lot of sun and I now see the need to take greater care with the Hydrea for sure.

Last night my skin felt tight and a bit sore. I was so surprised when I looked in the mirror and saw my face was lightly sunburnt 🙈 So I know now that Hydrea does indeed make the skin susceptible to sun damage quite quickly 😆

I did have sunscreen on all exposed skin before I went out and also I’d bought the tinted Le Roche Posay for my face. Only my face was burnt. I’d forgotten my cap but I wasn’t out in the sun long at all. Walking to gym about 10 mins each way. So I was shocked.

I’m sorry to hear you have had two squamous cell growths after Hydrea 😲 I’m glad you can still enjoy the life you love outside and I too Alan thankful for the health system we have these days that has given us a better quality of life.

Thank you for the tips for the sun and the clothes. I love linen tho wondered if it was good enough protection.

Sorry to hear about your flushes. My neighbour I walk with is the same. She comes home soaking and I’m dry. I did experience the flushes in my mid thirties.

I was living in Victoria at the time, it’s cold there a lot and I would wear short sleeves to keep comfortable despite others being rugged up. So far I’ve not experienced them again. My neighbour takes a HRT tablets every 4th day to help her.

Thank you for sharing with me 🌸 Best wishes for the future 😃

[SueWhitt in reply to Pachena]

Well, there we are at opposite ends of Oz's East Coast. Have to admit I'm less adhered to slithering lots of chemicals on my skin than simply avoiding hottest sun or wearing long sleeves. Sooner or later just about every chemical ends up being called a carcinogen. I've seen that for sodium laureth sulphate (still the major ingredient in most shampoos), and recently a batch of sunscreens were taken off shelf for containing benzene. I'd been using that one! And I've seen weedkiller (glyphosate) and diesel blamed for causing ET (I've certainly handled lots of both on farm).Good old vit D is important so while I wear sunscreen daily on my face via make-up, I only use actual sunscreen if I know I won't be able to avoid direct sun on other body parts, such as hands and right arm if driving. Otherwise it's moderation in exposure and get on with life.

All comes down to moderation and common-sense. After all, we have a disease but if lucky enough to find a control (in my case Hydrea is doing a great job) then that disease doesn't have to dominate our thinking or our lifestyle.

Live every day deliberately!

[Nikon7]

Red-haired and freckly here. Was on HU and now Besremi and sunblocks with zinc are my friend. However, you might be interested in the Coolmax sleeves that cyclists and others use. They keep your arms cooler and you don’t have to slather sunblock on your arms. Besides using them when I cycle, I don them when I’m out photographing. They worked very well in the Badlands NP. 😊

[Wilma66]

I've beenaily on Hydrea since 2014. I take 500 mg daily. I get in the sun but, don't stay out in it all day. I wear sunscreen, when I remember to. I enjoy being outside. You get vitamin D from the sun. Enjoy your time in the sun. Don't stay there to long. Regards,

Wilma

[Pachena in reply to Wilma66]

Thanks Wilma 👍🏻 yes now that I’ve had a fright with burning so easy, I now have to find a happy medium as I do enjoy being outside and enjoying the benefits of the sun.

I don’t want fear to become comfortable in my life 😊

[dancingfiend]

Sorry to keep you waiting!

My haematologist made me aware that taking Hydrea increases the risk of carcinomas.

I have just spent 5 days in (hot) Croatia with a couple of sea swimmer friends. As usual, I made sure to apply factor 50 sun block before venturing forth, wear a hat and long sleeves. I swim without hat, just wear shades to block glare, and sit in the shade, wearing a hat, to dry off. Wandering around the city, I always wore a hat and long sleeves. However, we DO need lots of vitamin D, so, providing no silly risks are taken (sitting in the sun for the sake of it is a thing of the past for me) and, like ainslie, I take vitamin D supplements, it's not necessary to make a drama out of it.

[Pachena in reply to dancingfiend]

Thank you Dancing Fiend for your message.

Yes some common sense and moderation for sure. I’ve been taking Vit D3 for some time.

My doc has ordered a test to see if I need to continue on with it at the moment.

Thank you for your time 🌸