It will be my first summer on HU and I am a little concerned about how to protect my skin, now that it needs extra protection because of HU, and how to stay cool at the same time.
I have ET and don't tolerate heat well. I get bad headaches and feel unwell.
My hematologist told me that I need to wear long sleeves, a hat etc. to protect my skin.
I live in France and our summers have been getting hotter and hotter.
I have a feeling that I will be spending a lot of time indoors...But I don't want to miss out on the summer completely and would like to be able to go out.
Does anybody have any tips about keeping cool and keeping skin safe?
I am usually covered in sun cream SPF 50 from head to toe. Although, I have to confess, I am not a big fan of the feeling of it on my skin.
May be there are certain fabrics that are better than others (I am switching to cotton and linen)? How are you dealing with this?
Thanks all
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JustKeepSw1mming
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I am not a fan of the heat/humidity we get here in the mid-Atlantic region of the USA. It is unbearable at times and one does need to dress for it if outdoors.
There is clothing that is designed to be lightweight, cool and with sunscreen (UPF50+). You can find it on Amazon or a similar online vendor. There are more outdoor lifestyle choices (e.g., shirts for fishing) as well as more stylish for the fashion minded.
I wear a hat with the neck flap or wide rim if I am going to be outside for a long time. I have several that are lightweight and comfortable. I find the back of my neck needs particular protection.
Suggest trying some different brands of sunscreen as they can feel quite different. Some are specifically designed to have a light feeling on the skin. Not sure what brands you can find in France but surely there are some.
I’ve just bought some factor 50 face cream from Boots (UK) it was on 3 for the price of 2. Probably optimistic as I live in the north of England! I have been wearing it every day though as we have had occasional glimpses of the sun, and our back garden faces south so even just hanging the washing out you can catch the sun. I always wear long sleeves, trousers etc anyway.
I agree with all of the above. I am also allergic to the sun, so I also try to ensure I am indoors when the sun is at peak heat (between 11.30am and 3.30pm for me). I also love hats! Take care x
hi I love the sun but not direct heat. I love laying in the shade. I always wear big floppy hats ( due to macular degeneration) I love long flowing dresses they I think they are cool. Ophs pun! I’ve also noticed that having my feet in a bowl of cool water works enormously. Not all factor 50 is thick and hard to apply. Nivea and child’s factor 50 isn’t. I was told factor 30 was ok.
I had a dermatology check yesterday following topical treatment of a tiny second basal cell cancer on my hairline, which I had suspected was forming after having first one excised 5 years ago. Consultant agreed being on Hydrea was a risk factor, and although not feasible on NHS to have regular monitoring encouraged me to check my skin regularly, note any changes, and if any concerns at all however small to consult GP (I have sent photos before which is helpful) and will be referred if necessary. And emphasised factor 50 sun protection, hat, long sleeves, shade, etc etc which I do anyway. She checked a few other marks I had wondered about which were all benign so I left reassured. I think one needs to balance the risk as with everything else in life.
I also live in (south) France and other than good sunscreen and wide brimmed hat, I sit preferably in shady areas under so-called “abri’s”, even with hat. We have a pool and hat stays on. 😀
I’m on rux but with PV still prone to melanoma so just living it carefully, but refuse to avoid sun completely except at the most intensectimescof the day (11am - 3pm).
I love this country and don't want to miss out on being out. I think it is just about finding a compromise and staying inside during hot hours. Although, it is harder as the temperatires go up.
hey. I am also on h.u and peg. I usually not traveling on the middle of the day. Walking on the shadow and use sunscreen. Act normally with extra care. Don’t go to sea or traveling in the middle of the day. Just let you know that you can get skin cancer even if you stay at home all day. Good luck and live your life regularly
Everyone has pretty much mentioned everything. Only thing I would ask about that MAY help would be Heliocare. It is a supplement made from a plant and it has some sun protective properties. Something I am encouraging my patients with lots of sun damage to check into. Just something you maybe interested in talking with your doctors about.
I am HU and having a terrible time with the sun, my lips absolutely cannot be in the light. I bought surf pants, shirts, shoes for swimming. Swim cap too. Always wear sunscreen and hat as said but I even have a sun protection umbrella - feel ridiculous but at least I can walk the dog. Prefer cottons but need to be close knit fabric to really keep sun out. I think you just experiment and see what works for you. Still in the process here. Good luck. Being a vampire is wearing.
I have ET and have been on hydroxy 4 years now. I use factor 50 sun screen summer and winter as I live an outdoor life. I also take vitamin D all year to compensate for the sun screen blocking its absorption. Many outdoor clothing shops now sell garments with UV protection built into it and many of the fabrics are synthetic and actually very cooling, I do a lot of cycling summer and winter but in summer I have long sleeve tops and long bottoms which appear quite thick bit they are cooling and very protective. Just a point, man made fabrics are more protective against the destructive effects of UV rays because they have a closer weave contrary to what people believe about cotton and linen, they possess a very open weave. I get my sunscreen prescribed by my GP as it is considered a medical need but it is quite thick on application so I look quite pale when I go out...'are you okay, you look very pale'. Anyway I also purchase a thinner version for my face so I look normal when going out with friends etc then I don't have to endure the endless questions about how ill I look!! I have to be honest I find it tedious having to do all of this but many of my older cycling friends are now peppered in skin cancers because they never used sun screen and to be fair it's not the first thing you consider in the north of England, but now after gaining so much information on all of this when I come off hydroxy (started that process) I intend to keep on using it. I hate hats so tend to wear wraps and base ball caps if out walking or gardening. You will find what suites you, good luck.
Use a good sunscreen on your skin, sun protective clothing and don't forget your lips. There are lip balms with sunscreen of at least 30. I use one with a spf of 45. Best to you
Thank you very much, Meatloaf. Yes, I think lips are often overlooked, when it comes to sun protection. I use La Roche Posay 50+. It works, but tastes a bit bitter sometimes. 😊 All the best
Hi. Two things I find useful are wearing a cooling vest. Not ice, but gel. They’re sold by a company called therm. apparel. You can wear under your clothing if you want & they don’t show. If you need extended cooling you can just switch out the gel packs with the vest still on. The second thing I do is use a fan. These may not be practical for you but because I get ill from too much high heat I have had to modify my lifestyle. Good luck.
I also dislike the texture of most sunscreens. I use a spray-one for that reason. It doesn't feel as gross to me. Maybe something like that would help?
I also like hats and long sleeves. I try to make sure I'm convered. I agree with everyone who's recommended certain clothing with UV protection!
Hi yes it's a problem I've been on hydroxy for 6 years now, I use body shop factor 50 and lip balm and La Roche-Posay fluide invisible fac 50 which is fantastic, goes on like milk 50ml about £20 but worth every penny. Tried them all but they the best and you don't look like a ghost. Good luck
Adding this, in case it can be useful to somebody else: La Roche Posay have a whole section on their page dedicated to skin care during chemo, including sun care. Of course, they try to sell their products too!
However, I discovered there is a UVA/UVB protection nail polish (exists in transparent mat version as well). Not something I had even thought of. Other brands might do this too.
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