Hi Folks, today I had one of my many cycling rides which always includes a stop at a tea room where I know there will be other cyclists so it is also a good social event. Before setting off I diligently apply my factor 50 sunscreen to my face and today also my legs as I dared to wear shorts. I had to brace myself for the usual barrage of northern humour which involves 'taking the mick' out of someone's 'out of the ordinary' state of being. I am sick to death of people commenting on my pale face (mostly concerned for my health) and today my legs got it. So every time I feel obliged to explain why I look pale then everyone gets to know my medical history. When I returned home I got stuck in to cutting my lawns after having applied more factor 50, no surprise when a few neighbours stopped to chat and then ask if I was okay....'you look pale'. Am I going over the top with my diligence in keeping my skin safe? Tomorrow I see the hospital haematologist to discuss a possible change in medication as my platelet levels have increased despite the hydroxy and I do not want to increase the dose as a result of ongoing hair loss. I know interferon can cause hair loss but does anyone know if this is as bad as the loss experienced by hydroxy. I do not think interferon causes any issues with skin where we have to apply sun block but some of you here may correct me on this but it would be lovely to go out sometimes without looking like a ghost. Any comments greatly appreciated.
Sun screen: Hi Folks, today I had one of my many... - MPN Voice
Sun screen
You might try using a tinted sunscreens to give yourself a bit of color. Unfortunately they tend to be expensive. I have no idea about the affects of interferon.
there are good “fake tan” products these days that you can apply anywhere on your body. They tint the color of your skin so you look tan. Katie
hi Janis, stick with your suncream, I use factor 100 and much prefer being pale to the alternative. I take curcumin, so I wonder if that makes me slightly yellow.
Re interferon, my nearly 2 year experience of it was that at first my hair fell out then a few months later started growing like mad, however it made me anaemic and depressed so be careful how you go.
you can get tinted moisturiser which can go on top of sun screen, however I prefer to be pale and interesting, or you could tell them you’re a vampire 😆
Hi. I’ve been dallying with moving from Hydroxy to Interferon. I thought that (among other things) that might allow me to be a little less cautious on the sunscreen front.
But alas, apparently, not. Once on Hydroxy, always with the sunscreen!
So pale and alarmingly interesting it is then. TBH, my skin is looking a whole lot less wrinkly than my sun worshipping peers! So there is an upside! Tinted sunscreen (try Roche Posay) or tinted moisturiser mixed in with sunscreen and fake tans are the way to go. Though I’ve taken to covering up and avoiding applying the gloop.
Hi Are you saying that if you change from hydroxycarbemide to another medication you keep the possibility of skin cancer just because you once had the drug? Irene
I would need to explore this further, but that’s what was inferred. I will ask for clarification at my next consult. TBH I’ve got used to covering up, wearing hats etc (still hate sunscreen but Roche Posay have a range of good options for your face) and my skin is a lot better for it.
That’s interesting. I’ll ask at my next appointment too. Are you with a MPN specialist? I’m not so would you please let us know any more information you find. I use Roche Posay too but I do miss enjoying the sunshine as much as I used to. Thank you Irene
Hi, I have moved from HU to interferon (Pegasys) through a gradual transition. The last dose of HU was two months ago. When I asked the MPN consultant whether that meant I could be less cautious with sun exposure she looked at me in horror... However, I have skin sarcoidosis (which can be a problem with Pegasys as it can make it worse) and my observation is that the skin that is more exposed (face, arms) has less or no sarcoidosis, and indeed , the dermatologist thinks the sun would help. So for me it is a careful balancing act. I always protect the head and face with a hat and wear strong sunscreen, but recently I have started spending 15 min in the sun without sunscreen in the early morning or late afternoon when the sun is less strong. In any case, I will keep exploring the issue with the docs.
Your consultant’s response to the sun exposure question sounds much the same as my consultant’s response! But clearly you have a unique set of other considerations. I wish you well.
thank you! I wish you well too
Hi there. I really felt for you as I read your post. I too cycle regularly, and walk, sail, paddleboard and generally enjoy the great outdoors and love being outside in good weather. I have always religiously applied sunscreen (usually factor 30 until taking Hydroxy just this year and moving to factor 50, with the inevitable thicker, whiter layer effect!) but have always tanned easily and without burning through the sunscreen. I'd rather wear sunscreen than cover up excessively as I overheat when wearing too many layers, but am happy to sit in the shade when not actually on my bike or on a walk. So the whole skin cancer risk has unsettled me quite a bit in terms of impacting my lifestyle as I want to continue enjoying the same activities as before. So I was quite reassured to watch this conversation about hydroxycarbomide and the risk of skin cancer. mpnvoice.org.uk/news/in-con...
As long as you know why you're coated in sunscreen, and that it's allowing you to do the things you enjoy in life, I don't think you owe any random passerby any explanation of what you look like! Keep on pedalling!
Hi, I take Rux and use factor 50, also wear a hat and loose beach shirts to cover up. I get the Welsh banter about my funny hat etc.I usually give a quip back depending to whom talking, but often reply I don't want to get burnt and sort of give them a look implying they're being foolish for not using sun screen. In other words I don't really care and certainly don't share my health situation.
As I do a lot of walking think I'm getting to be known in the village as the woman in the funny hat. Love it.
Our condition is a hidden one. Hardly anyone knows I have it and I refuse to explain why I am unsociable and turn down invitations. I just blame it on ‘can’t hack it anymore now that I’m older’😂. Different story though with white legs☺️. I have been on Pegasys for 2 years and no hair loss. I always ask my hairdresser to confirm it’s not thinning too. At least with peg you can take normal precautions with the sun and gain plenty of vitamin d, so important for our health too
Hi
I’m on interferon and you still have to be very careful in the sun. I use factor 50 whenever I’m outside in the spring/summer, along with wearing funny hats, or caps if I’m walking. To be honest, there’s a huge part of me now that thinks in this day and age, where people know the damage sun can do, with or without the heightened risk from hydroxy/interferon/rux, that it’s people without sunscreen on that deserve the funny looks or comments. I’m pretty comfortable just being the ‘pale and interesting’ one and reassuring myself that I’m as protected as I can be. I love my straw hats and array of caps for walking - coordinated with the day’s outfit obviously! And you can get factor 50 nowadays that does at least properly blend in rather than leave that white chalky residue. You do have to reapply more than the ones specifically for sports.
I would recommend caution if using fake tan . Look at ingredients . Same applies to some sun screens.
I’ve been experimenting with different SPF 50 products. They are usually either “mineral” (e.g. Zinc, Titanium) or “chemical”(e.g. Avobenzone, Oxybenzone). The mineral ones are white and leave you looking ghostly. Haven’t found the best product yet, but the better ones are pricey! Pretty impressed with Alba Botanica sheer (mineral) and Supergoop Play (chemical).
That's pretty rude of people to comment on your appearance and I can understand it getting tiresome. If you want to look tanned there are some very good fake tans around. Maybe ask a young person, as apparently fake is the way to go these days. My niece's fake tan looks great - she and her friends never risk sunburn, times have changed since I was young!
there are sunscreens that do not turn you white, and that can be worth researching. It can be a trade-off, though, because the safest sunscreens are zinc and titanium dioxide, but those cause a white cast. The chemical sunscreens often do not. Since having to have Mohs surgery and having to wear sunscreen more often than I did before, I have chose a compromise. When I am going to be out in the ocean, where I do not want to bring any chemicals, I use the sunscreens that are mineral and will turn me white. If I am just out and about, I am using sunscreen that does not turn me white. I have had good luck with La roche posay. I always check the environmental working group Skindeep database to find out how safe the sunscreens are.
no one comments on my white cast, but I do often explain why I stay out of the sun when I can, and simply tell people that I am a vampire.😊
the main thing is don’t let anything get in the way of your being out and about and enjoying your exercise!
Wishing you the best
I need Mohs surgery as well but don’t think it is available on the NHS, where do you live?
I live in Hawaii. I hope that you are able to find it available to you. Good luck.!
thank you Island-Lady xx
No interferon stopped my hair falling & regrowth started. Hydroxy I was on made hair fall daily. I use Factor 50 always but not pale. My skin still tans as outdoors lots due to sailing hobby volunteering.
I keep shorts Summer but top up the cream every few hours . I was white on Hydroxy but on Interferon I do have colour I used one of the many creams from chemists to rub on legs etc so I don’t look like a white stick insect . 👍
I would ignore the comments and stick with good quality factor 50, my dermatologist suggests all people use it in summer and 30 rest of year , this is in UK where sun is well a bit rare. Todays tan is next months wrinkles and maybe next years skin cancer. You can still tan on 50, well both my partner and I can. Peg is defo better on your skin but can also for some be hard on skin. On a lighter note Joan Collins never lets sun on her face and probably looks pretty good for 90 😀
Wow! I can’t believe so many people feel like it’s acceptable to make these sort of comments to you. How rude!! I’m so sorry you have to deal with that so often.
If it were me I’d shoot back with something along the lines of “Thanks for your concern, but my oncologist is trying to prevent me from getting any secondary cancers over and above the one I already have. I’m not so vain I’d risk getting another cancer for the sake of a tan” and walk away. Turn the tables and make them uncomfortable for a change.
I’m a pasty white redhead myself, and I’d be hard pressed to bite my tongue if people made comments like that.
Hi, and thanks for your response. I did just that today! It's a bit of a badge of honour in cycling, the colour of your legs, it indicates how often you are getting out and the number of miles you are getting in and maybe 'someone to watch' it's hilarious really. But today in the cafe and a couple of 'fast lads' came in who I have known for many years came out with 'god Janis you need some sun on those legs'. My response was 'I wish, but I have cancer you know and the chemo drug that I have to take forever puts me at risk of skin cancer so sun is my enemy'. The jaw drop and embarrassment from them was a sight to behold, the lady working behind the counter enjoyed the response as much as I did. Maybe I should record my response and put it on a loop in the tea rooms to save me the bother every time. The other comment I often get mainly from friends is 'your looking thin'. They have no idea I find this offensive since I cannot do anything about it (I eat for England by the way). I have not plucked up courage yet to respond with 'my your looking hefty'. Just as well I am thick skinned as they say.
hahahahaha I’m with the lady behind the counter!!
I certainly don’t try to make people uncomfortable for no reason, but sometimes you just have to put them in their place when they’re stepping out of line and being rude. Those boys are now thinking “Wow! She has cancer and she’s still out cycling? She’s badass!”
I love it! Thanks for sharing!
Another active cyclist with PV here. I switched from HU to Besremi last July and one of the long term benefits of Besremi are decreasing the mutated stem cells that our bodies produce. I’m stable in my labs and injecting every 3 weeks now. As for sunscreen and cycling friends -I’m a red head with freckles and I use a zinc-based sun block recommended on EWG.org for non-toxic ingredients. I’m also a big fan of the white sleeves that are cooling and prevent having to use sunscreen on your arms. Lastly, thanks for speaking up about you MPN. Each time we do we educate others.
Hi and thanks for your response. I wondered about those white sleeves but as I have such thin arms I assumed they would just fall down. Mountain Warehouse sell a range of clothing with uv protection and some of it is suitable for cycling mind you I have no idea how they introduce the uv protection into the fabric...more chemicals probably. It appears the Interferons are used more commonly abroad than here in Britain, my consultant claims they are not used much these days, I wonder if cost has anything to do with it? I like the idea of Anagrelide as it only reduces the platelets and as I have ET this would make sense and my white and red cells would be left alone. It is a bit off putting when the ultimate decision is left to the patient but this site is a wealth of information and an account of personal experiences. Happy pedalling!
Hello Janis12, please keep on with the sun protection. I was on hydroxycarbamide for 30 years and now been on ruxolitinib for 10 years. The last 5 years I have had several skin cancers including 4 skin grafts. I was careless in my younger days but now use 50 and 30 sun protection, but it's a bit like shutting the stable door after the horse has bolted. Just tell those who make fun of your white legs that it's the latest fashion 😉Anyway best wishes to everyone from Michael
Gosh, that is good advice from a seasoned pro. Good advice and reassuring from someone who has been in this game for so many years and aside from the skin cancer issue that you are still alive and kicking with your MPN after all this time. Thank you so much for your advice , it's given me a bit of a boost....carry on with the sun cream at all costs, maybe I could get to like my white legs (and face). Best wishes to you.
Hi I would also recommend The body shop s skin defence factor 50, its brilliant does not go on chalky white at all its weightless and invisible, I play tennis so like you need it at times, good luck.
Never thought of the body shop as a place for sun screen so thanks for that tip off.
Janis, you can get UV protective cycling clothing from Stolen Goat. Our club kit is from them.
I’ve just been diagnosed with Primary Myelofibrosis and am on Hydroxycarbamide.
Thanks for that info I will have a look but I am not the easiest to fit out at size 6-8 (uk) and 4ft 10 inches....my life is a series of challenges!
I live in Hawaii and surf on weekends. I use sunscreen but I also take Astaxanthin. It is called Bio-Astin and does wonders for protecting the skin against UV rays. "astaxanthin has shown strong photoprotective properties for your skin. This is a fancy way of saying that it can help protect your skin from the damaging effects of UV radiation" I take it daily, and have been on HU for 4 years now.
puritywoods.com/2021/07/28/...
That's an interesting approach will look that up, anything that helps. Happy surfing.
Most of the pro surfers and watermen take Bio Astin (Astaxanthin) and swear by it. Of course they all use lots of sunscreen as well
Wow this is some stuff, I see it is available from Amazon. I guess I need to check it out with haematologist first although I cannot see anything in it's make up that would be contraindicated. The common problem with the supplements tends to be with our blood thinners . Thanks for this information.
I have been taking it for over 10 years, but I did clear it with my doctor once I was diagnosed.
Living in Hawaii is great but it requires special attention to the skin.
Hydroxy and The Sun
Sun protection
Beware of sunshine!
Protecting oneself from the sun
Interferon--does ones age make a difference?
