Hi all, I am 71 now PV and starting HU. I have been warned to stay out of the sun or wear long shirts and pants and a hat and sunscreen when outside. I cycle every day weather permits and the temps are in the upper 80s this time of the year where I live. I spend 2-3 hours in the sun every day. I can't give up my cycling as this is my only exercise currently and it keeps me sane, I think.
I am wondering what other HU takers actually do as far as protecting themselves from the sun and if anyone has had skin cancers while on HU and how long you were on the HU before having the skin problems.
Thank you in advance for any advice.
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Meatloaf9
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I am also a cyclist doing a 100k ride tomorrow and was on HU but I had to stop it because of a bad reaction. It also caused my skin to develop several BCCs despite the fact I used factor 50. But definately protect yourself otherwise your skin will blister and use factor 50 SF. I found my face and arms were the worst affected. I am now on Ruxotilib but I think the same applies.
Meatloaf9I have been on HU for about 5 years and live in Colorado at almost a mile-high. I just finished 10 days of outside work wearing shorts and tee shirts and a hat, no sunscreen and I had no adverse reactions. I was never warned about the sun issue and haven't encountered any negative impact from the HU regarding sun exposure.
Thank you Jsb. Both my hematologists warned me of skin cancers with sun exposure. The specialist said the cancers were mainly due to lifelong exposure, if that is so then I don't really understand the reason to avoid the sun now. Good luck to you, I love the Rockies.
I don't understand that either. Since having eight BCCs removed (in various ways) about three years ago, I haven't had a recurrence. I always put factor 50 on my face when going out but I think if I lived where temperatures were in the 80s I would put more on and cover any exposed parts. When the sun is strong it can permeate light clothing. It makes sense if you are fairly young and spend time outside as you might still have time to develop more ulcers. It's a good idea to learn to identify them before they become nasty.
Well the sun is quite healthy...15 minutes a day is all you need more than that might get skin cancer...most of the suntan lotions are no better than excess exposure to the sun.
I have been on HU over 20 years and only learned about its link with BCC last year from this group. I am 66 and have had 7 BCC removed. I thought I got so many due to a couple of bad sunburns I got as a teenager plus I am relatively pale hence prone to sun damage. I never was great at using sunscreen and could be a lot better these days. All of that being said BCC are slow growing and life is short. Wear good sun screen and keep on cycling. I admire you and the fact you still cycle.
Thank you for your reply, great to see that you have been able to take HU for 20+ years, you are doing something right. I think we all need to keep moving every day if possible, it has to help something. Best to you.
Thank you for the info. I will look into that sunscreen, have not heard of it before. A regular check up by a dermatologist seems in order. Good luck to you going forward.
Hi Meatlaof9. That was one of the first things i was warned about as the HU makes your skin extra sensitive to sun. I worried myself silly how can i go on holiday and wear long sleeves and trousers. I stopped worrying and carry on as normal. I do wear factor 50 on holiday but sunbathe as normal.
No reason to give up cycling but there are proven links between sun exposure & skin cancers regardless of whether you are taking any medication. I’m 3 weeks into taking HU & have always worn SPF 30 plus on my face even on cloudy days. I’m 41 & dare I say it, it seems to be the older generation who don’t bother with sun protection. In this day & age, we should all know better…wishing you well x
I agree with you. I wish I had done a better job of using sunscreen and avoiding the sun during the worst times of the day when I was your age. I will do my best going forward. Good luck to you also.
I have not had any problems on HU other than I have noticed the skin on my forehead seems to have got very thin and a bit flaky - so for anything other than a quick trip to local shops I always wear a hat and sunscreen.
Thank you for your reply, I will try to follow your lead. Spent my life up to now hating to wear hats and sunscreen. In for a big adjustment now. Continued success for you.
Hi I was told to make sure I wear factor 15+sunscreen and that’s all. We all need sunshine for our Vit d. Hu can diminish our levels. I’m speaking from experience. Also fatigue is greatly controlled by exercise.
As yet I have t experienced skin cancer and I’ve been on Hu for nearly 6 years I love the sun and hear but prefer to sit in dabble shade.
My advise is cycle all you want, wear a hat and sun glasses. Put on factor 15 sun cream , on really sunny days cycle when the sun isn’t so strong.
Hi Wyebird, I like your philosophy, especially the life is for living part. I do plan to continue cycling. I am as far removed from an olympic cyclist as is possible but I do keep moving. Glad to read that not so many have reported extremely bad outcomes thus far. Best of luck to you always.
Sorry meant to say wear factor 15+ not 15. I agree with others wear a high factor especially if you are out for hours. I’m well jealous of your cycling ability.
I have been on HU for going on three years now, I never wear shorts or short sleeves nowadays and put on factor 50 every day even during winter and always wear a Hat following bad sunburn about four years ago.I have been recently been told by a Dermatologist that I have sun damage on my head and face although nothing to worry about. It is important to be careful about the sun whilst on H.U.
Thanks for the advice. Glad you have not had anything serious. I plan to do the best I can, I don't think I can go cycling on 85+ degree days with long sleeves and pants. I will have to just figure out what works best while still getting some exercise. Continued success to you as you continue on this journey.
Hi I am 70, been diagnosed with PV 5 years ago and am taking HU. I understand that skin cancers are a recognised potential side affect. I am fair skinned and have had 3 actinic karatoses removed -not cancer but potentially 'pre cancer'. I always wear factor 50 in the sun, plus sun hat, long sleeves and trousers when I'm outside in the summer -which is a lot as I do enjoy walking.
Thank you Bluetop for the advice. I plan to do the best I can while not giving up on exercise. I am sure one day it will have to end. Glad you have not had anything more advanced than AK's, not that anyone wants them either. Best to you always.
Staying active and exercising is so important. There is excellent sportswear made with sun protective fabric. REI Coop has a good article about how to choose the best items. I’m sure there are other places selling sportswear with the same protection.
Hi Meatloaf 9, I do not cycle but am an avid golfer which means at least 5 hours in the sun usually 4 times a week. I have been on HU 12 years and 2 years of Anagrelide in between. I was not initially warned about sun exposure and after about 3 years began having Basil & Squamous spots removed. I see my dermatologist every 6 months and sooner if something pops up. I have precancerous spots sprayed at every visit ( usually about 8-10) and others surgically removed from my upper body and head. It is very unpleasant. I am a blue eyed blonde. I wear 60+ sunscreen on my body and 100 on my face, neck & ears. While on Anagrelide for 2 years I had considerably less skin problems. Now back on HU and skin cancers are back again.
My social life revolves around golf so I now wear large hats that cover my ears, neck and most face and two golf gloves. I wear long sleeved white shirts under all my golf clothes. So far my legs have been OK with just 60 SPF.
It is very hot wearing an extra layer when temps are in the 90’s and not very attractive but it’s that or give up the game. I would suggest you take similar steps to protect yourself while cycling and try to ride early mornings or evenings. We do all need exercise but you do have to be careful.
Thank you Ladygolf. So sorry to hear that you have had so many episodes of skin problems. I do understand that golf can be very addicting as well as fun to play. I was a golfer in my younger years so probably had a lot of sun exposure for a lot of years, never used sunscreen then, will now. Hoping you can continue golfing for life and that it continues to bring you much joy in your life. Like Wyebird said, life is for living. Best of luck to you going forward, keep hitting them long, straight and where you want them to go. I will do the best I can and you continue to do the same.
I live in a hot dry climate, with the peak temperatures running around 90- 95 for the last few weeks. I work part time as a gardener. As both my brother and my father have had repeat bouts with skin cancer or pre cancerous moles, I don't want to risk going uncovered. So I use sunscreen, wear a hat with a drape in the back and a loose fitting SPF 50 drape that covers my arms very well and it is mostly comfortable even at those temperatures. I will wear long pants or sunscreen on my legs depending on how much exposure I think they will get. I also try to do most of the gardening early morning. Drapes work really well in dry climates, but in a humid climate they are stifling. I don't know how well it would work for bicycling.
If you are out for 2-3 hours, sunscreen should be enough, maybe a drape attached to the back of the helmet for extra protection on the neck. Also try to schedule for early morning. You'll probably need to reapply the sunscreen over the course of a ride.
I have been on HU for only a few months so don't have any long term advice. But I would think, in deciding if it is worth the risk to you to go without protection, you will need to factor in how much damage has already occurred by the degree of exposure to the sun and the number of bad sunburns you had in your life.
Hi Nightshadow, thank you for your reply. I have had a lot of sunburns in my life so who knows how much damage I have now. I started using 50spf this year, several layers on nose and face.. Good advice by all. Continue to protect yourself and all the best to you going forward. Thanks again.
Hi, I also recently started on HU and practice an outdoor sport, running in my case. I was also warned about the sun risk (hard, as I love being in the sun!) and don't want to take any unnecessary risks. So: I bought a couple of long-sleeved sun blocking shirts and t-shirts, I wear spf 50 sun block cream, a hat or cap as much as possible, I stick to shaded areas as much as I can and avoid central hours when the sun is strong. Trying my best
Hello, sounds to me like you are doing what you can to avoid the risks of HU and sun damage. Not sure what else we can do except stay indoors forever, not an acceptable alternative I would think. I haven't got the spf shirts yet but I am looking into them. Otherwise I am currently doing what you are doing. Thanks for the advice, continued success to you.
I’m ET Calr type 1 2018 diagnosis. I’ve had several types of skin cancer 2014-2017. None since my MPN diagnosis which included beginning Hydroxyurea. I use neutrogena sunscreen helioplex and baseball caps. I’m 62 years young. GL!
Love that you said you are 62 years YOUNG. A great attitude. I'm still 18 in my mind though the body don't agree right now. Glad you have had no problems since beginning HU, may it continue for a very long time. Best to you always.
Hi! I'm 66, ET. A redhead in Australia and have lived an outdoorsy horse-filled life, which is a pretty neat combination skin cancer-wise. I don't like wearing hats (and not a lot of sun protection from a riding helmet!). I have tried to keep to long sleeves and sunscreen but not as well as I probably could have. The one thing I was serious about was only buying and using makeup with built in sunscreen (Shiseido has some great products). I have had a few benign spots frozen off hands and arms over the years, but nothing nasty and nothing on my face. I started on Hydrea 3 years ago and within 3 months I developed a fast growing bean sized SCC (malignant) on my right hand. Successfully removed. Then another the same on my left hand last year, also successfully removed. Hydrea has brought my platelet levels down from 900s to 300s and I feel very healthy and energetic so I'm staying on it, with dose now reduced to 500mg 5 days per week. I now regularly see my gp, a haematologist and a dermatologist. Life is great and the skin stuff is manageable. Luckily I'm not squeamish and my doc is great with a scalpel!
Hello, sorry that you have had the SCCs since starting the HU, hope you are able to fend them off from now on. Sounds like the HU agrees with you very well with the exception of the skin lesions. Having a great attitude as you do certainly serves you well. Keep up the protection best you can and everything else should take care of itself. Good luck to you always and thank you for your response.
Hi, think its just a matter of being sensible without going over the top.
I am 70 have ET and have used Hu for 19 years and have played golf all that time, using sunscreen for face and neck and ears and occasionally arms and have not had any real issues, as I have always been easily burnt from young so think everyone needs to have some sun protection, on Hu or not.
Thank you, it sounds like very sensible advice to me. I don't know if the problems are dose related or not, I forgot to ask. My one heme wants me to start at 4X500 per day and then back off, the specialist said 2X500 and then increase if necessary. I am going with the 2X500 to start and see what happens. When I go back next week I will ask if the skin problems are related to doseage. It's great that you have taken HU for so long without problems, I hope you are able to take it as long as you need it. Good luck to you and keep up the golfing, it's a great game.
Hi Bobadog, thanks for sharing the info. Good luck to you at your next appointment. When Besremi is approved for PV in the US I plan to push my hematologist to switch from HU to that form of interferon. Peg Inf is not approved for PV in the US and is hard to access. Consider all your options. Sounds like you are very active, that has to help. Best to you as the journey continues.
HU is also not FDA approved for PV in the US. It is just cheaper than Pegasys. Depending on your insurance. You can get PEG approved as it is still a first-line treatment option. I have no problem at all getting it approved - just had to jump through the hoops with my Cigna Medicare Rx program. If you know you prefer PEG over HU, then suggest starting there in the first place.
FYI - my daughter (age 35) is also JAK2+ ET moving toward PV. Her MPN Specialist plans to start her on PEG when cytoreduction is indicated. If insurance will not approve, then the doc plans to start on HU and immediately switch her at any sign of reported adverse effects. Smart docs know how to work the formularies in their patient's best interests.
All the best on your quest for the med you prefer.
FYI - when I did use HU (3 sperate times) I never had a doc start me above 1x500mg/day. Some docs start lower to see how the patient reacts to it. Theory is better safe than sorry. Not all docs adopt this strategy. It is ultimately up to you to decide.
Hi Hunter, I have to agree with you. I probably should have pushed for the Peg from the beginning but did not. I still plan to go for the besremi when approved and if it is rejected then I will push for the Peg. I do not want to take HU long term, if I have long term, but need to get bloods lowered quickly in my opinion, I was having a lot of symptoms developing rapidly in the last 3-4 months. Both my local heme and the specialist I see recommended the HU and maybe stupidly I did not argue with them. Have been on Hu 1 wk at 2 per day and have first testing next week, will see what has happened. No side effects that I know of so far. My local heme says he has treated over 100 pts with HU and has another PV pt who has been taking HU for 18 yrs and still doing well, that is probably the exception, everyone is different.Thanks for the advice and expertise and good luck to your daughter and good luck to you with the Peg, hope it serves you well indefinitely. Best to you.
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