Thanks for sharing this. Where I’m at the humidity is pretty low so a 90+ degree day here feels nowhere near as oppressive as the same temp with high humidity. Our relatives in the Houston area are really feeling it.
Im in Houston and it’s HELL! Pretty much staying inside except the occasional run to the store. Sunscreen and protective clothing are the new norm for us PV People. At least we can continue on without too much suffering!
I've got a question, doing some research and found some advice about food. I have been having problems with digestion and bloating but I eat well, mainly salad with a side of protein. I just found recommendations not to eat certain veggies, and green leafy is one of those. Does anyone know or have an accepted menu of food? I'm now wondering if all my healthy eating has been irritating my stomach and that's why I feel uncomfortable after I have dinner and have digestion problems. I really make a great salad with alot of fresh things in it and I eat salad almost every night oops!
You’re welcome! I’d never given it much thought either before my transplant. I had used sunscreen, albeit sporadically in my pre-transplant days but having the conversation with my doctor, he said only sunscreen isn’t protection enough and that uv damage is accumulative.
I seldom paid much attention to the UV reports but I do now. Because even cloudy days, there can still be sun damage from the UV rays.
I tend to lose my cherub-like demeanor when it’s hot (especially with humidity). How are you staying cool in that oppressive heat in the southwest?
Thanks for sharing this. Where I’m at the humidity is pretty low so a 90+ degree day here feels nowhere near as oppressive as the same temp with high humidity. Our relatives in the Houston area are really feeling it.
Ha! yeah, it's a bit toasty here, but certainly not anywhere near what it is in AZ. We are at a higher altitude hence a bit cooler. We have a large spa I keep at a very refreshing temp (that happens to be in the shade in the afternoon) and thankfully have solar electric so I can put my a/c down where I like without having to worry about breaking the bank! We trade this for all tornadoes, snow, ice, hayfever and nasty midwest weather. For us it's a much better trade off!
Thanks so much for sharing this info. I had never really given it much thought before.
Coincidentally, just today the local newspaper reported that my state was experiencing the highest UV exposure in the country right now due to this heat wave that’s hitting most of the southwestern parts of the country.
You’re welcome! I’d never given it much thought either before my transplant. I had used sunscreen, albeit sporadically in my pre-transplant days but having the conversation with my doctor, he said only sunscreen isn’t protection enough and that uv damage is accumulative.
I seldom paid much attention to the UV reports but I do now. Because even cloudy days, there can still be sun damage from the UV rays.
I tend to lose my cherub-like demeanor when it’s hot (especially with humidity). How are you staying cool in that oppressive heat in the southwest?
Hi @beebo and others who take Hydroxyurea and are wondering about sun exposure, the need to wear sunscreen/protective clothing and the potential for skin cancer.
Hydroxyurea is one of many drugs which can cause photosensitivity reactions to the skin when exposed to the sun. The skin can become easily irritated, inflamed, and more prone to burning from the sun’s ultraviolet (UV) radiation. In some cases, it can even lead to severe sunburns and skin damage. So that in turn increases the potential for skin cancer to develop.
@beebo, living in NM with an enviable about of sun compared to my northern WI, it’s important to slather on that sunscreen but also cover up. I had that discussion with my hematologist/oncologist. Sun screen can only do so much but doesn’t filter out all harmful UV radiation, especially the radiation that can lead to melanoma.
So it helps to wear protective clothing with built-in 50+sunblock, wearing hats that cover head and neck, long sleeve shirts, etc., when out for longer periods is really important to avoid skin issues.
Granted, some sun exposure is healthy to grab that all important Vit D, so just use common sense to protect yourself from too much sun. In the US, the sun's rays are strongest between about 10 a.m. and 4 p.m. so extra protection is important then. The key is to avoid burning and irritation to the skin.
The same goes for anyone who is immunocompromised. When our body’s defense system isn’t functioning at full capacity from illness, cancer, medications it leaves us vulnerable to developing skin cancers.
Thanks so much for sharing this info. I had never really given it much thought before.
Coincidentally, just today the local newspaper reported that my state was experiencing the highest UV exposure in the country right now due to this heat wave that’s hitting most of the southwestern parts of the country.
Yea, being on this medication is a game changer for me. I love the beach and pool and live in TX. This is my first summer avoiding the sun and I’m struggling finding things to do. It’s so hot, I need to adjust and I have to just be grateful the meds are working. I am getting small brown spots from the meds also which is a common thing 🙄
I’m going on two years since my PV diagnosis. Taking 500mg of hydroxyurea 4x weekly. Had not heard or read about any issues with sun exposure related to this condition until now. Is it the PV or the medication that causes extra risk from the sun? I’m in a high altitude and lotsa sun area (NM) and I spend a lot of time outdoors. Any advice/ suggestions would be appreciated. Thanks
Hi @beebo and others who take Hydroxyurea and are wondering about sun exposure, the need to wear sunscreen/protective clothing and the potential for skin cancer.
Hydroxyurea is one of many drugs which can cause photosensitivity reactions to the skin when exposed to the sun. The skin can become easily irritated, inflamed, and more prone to burning from the sun’s ultraviolet (UV) radiation. In some cases, it can even lead to severe sunburns and skin damage. So that in turn increases the potential for skin cancer to develop.
@beebo, living in NM with an enviable about of sun compared to my northern WI, it’s important to slather on that sunscreen but also cover up. I had that discussion with my hematologist/oncologist. Sun screen can only do so much but doesn’t filter out all harmful UV radiation, especially the radiation that can lead to melanoma.
So it helps to wear protective clothing with built-in 50+sunblock, wearing hats that cover head and neck, long sleeve shirts, etc., when out for longer periods is really important to avoid skin issues.
Granted, some sun exposure is healthy to grab that all important Vit D, so just use common sense to protect yourself from too much sun. In the US, the sun's rays are strongest between about 10 a.m. and 4 p.m. so extra protection is important then. The key is to avoid burning and irritation to the skin.
The same goes for anyone who is immunocompromised. When our body’s defense system isn’t functioning at full capacity from illness, cancer, medications it leaves us vulnerable to developing skin cancers.
I’m going on two years since my PV diagnosis. Taking 500mg of hydroxyurea 4x weekly. Had not heard or read about any issues with sun exposure related to this condition until now. Is it the PV or the medication that causes extra risk from the sun? I’m in a high altitude and lotsa sun area (NM) and I spend a lot of time outdoors. Any advice/ suggestions would be appreciated. Thanks
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Im in Houston and it’s HELL! Pretty much staying inside except the occasional run to the store. Sunscreen and protective clothing are the new norm for us PV People. At least we can continue on without too much suffering!
My oncologist said I didn’t have to change my eating habits. Just stay away from liver. Seem to work for me.
Thanks for sharing this. Where I’m at the humidity is pretty low so a 90+ degree day here feels nowhere near as oppressive as the same temp with high humidity. Our relatives in the Houston area are really feeling it.
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1 ReactionHa! yeah, it's a bit toasty here, but certainly not anywhere near what it is in AZ. We are at a higher altitude hence a bit cooler. We have a large spa I keep at a very refreshing temp (that happens to be in the shade in the afternoon) and thankfully have solar electric so I can put my a/c down where I like without having to worry about breaking the bank! We trade this for all tornadoes, snow, ice, hayfever and nasty midwest weather. For us it's a much better trade off!
You’re welcome! I’d never given it much thought either before my transplant. I had used sunscreen, albeit sporadically in my pre-transplant days but having the conversation with my doctor, he said only sunscreen isn’t protection enough and that uv damage is accumulative.
I seldom paid much attention to the UV reports but I do now. Because even cloudy days, there can still be sun damage from the UV rays.
I tend to lose my cherub-like demeanor when it’s hot (especially with humidity). How are you staying cool in that oppressive heat in the southwest?
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Like -
Helpful -
Hug
1 ReactionThanks so much for sharing this info. I had never really given it much thought before.
Coincidentally, just today the local newspaper reported that my state was experiencing the highest UV exposure in the country right now due to this heat wave that’s hitting most of the southwestern parts of the country.
-
Like -
Helpful -
Hug
1 ReactionYea, being on this medication is a game changer for me. I love the beach and pool and live in TX. This is my first summer avoiding the sun and I’m struggling finding things to do. It’s so hot, I need to adjust and I have to just be grateful the meds are working. I am getting small brown spots from the meds also which is a common thing 🙄
-
Like -
Helpful -
Hug
1 ReactionHi @beebo and others who take Hydroxyurea and are wondering about sun exposure, the need to wear sunscreen/protective clothing and the potential for skin cancer.
Hydroxyurea is one of many drugs which can cause photosensitivity reactions to the skin when exposed to the sun. The skin can become easily irritated, inflamed, and more prone to burning from the sun’s ultraviolet (UV) radiation. In some cases, it can even lead to severe sunburns and skin damage. So that in turn increases the potential for skin cancer to develop.
@beebo, living in NM with an enviable about of sun compared to my northern WI, it’s important to slather on that sunscreen but also cover up. I had that discussion with my hematologist/oncologist. Sun screen can only do so much but doesn’t filter out all harmful UV radiation, especially the radiation that can lead to melanoma.
So it helps to wear protective clothing with built-in 50+sunblock, wearing hats that cover head and neck, long sleeve shirts, etc., when out for longer periods is really important to avoid skin issues.
Granted, some sun exposure is healthy to grab that all important Vit D, so just use common sense to protect yourself from too much sun. In the US, the sun's rays are strongest between about 10 a.m. and 4 p.m. so extra protection is important then. The key is to avoid burning and irritation to the skin.
The same goes for anyone who is immunocompromised. When our body’s defense system isn’t functioning at full capacity from illness, cancer, medications it leaves us vulnerable to developing skin cancers.
-
Like -
Helpful -
Hug
3 ReactionsI’m going on two years since my PV diagnosis. Taking 500mg of hydroxyurea 4x weekly. Had not heard or read about any issues with sun exposure related to this condition until now. Is it the PV or the medication that causes extra risk from the sun? I’m in a high altitude and lotsa sun area (NM) and I spend a lot of time outdoors. Any advice/ suggestions would be appreciated. Thanks
Thank you very much!
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