Sunscreen protection with high spf of 50

Thanks Duncan for your advice, I’ve since got my hat with uva/uvb sun block from wallaroo! Plenty to choose from, they recommend at least a 4inch brim which I’ve got, I’ve got la Roche posay sun screen for the body and murad for the face. That company has a great read about the sun screens how they should be made chemical and mineral. It’s expensive but worth it. I’m now currently looking at clothing. I have my bloods done tomorrow 8/5/24 with the follow up phone chat the day after with the results and I’m going to ask about a blood test to check my vitamin d levels, as I’ve read on here some people have low levels. Fatigue is a right old pain, especially affects my eyes, they feels so tired. Onward and upward for us all.

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Oh you’re very welcome, @Mrsmac! We’ve got to keep an eye out for each other with these dratted MPNs and all their new side effects, so it’s great that we can share our tips here.

Really glad you’ve found a sun screen you like, I’ve read good things about La Roche-Posay. As for its price, our longevity and skin health is worth it, I say! Funnily enough I’ve been using a new moisturiser/sun lotion since you started this thread and love it. It’s called Andalou Naturals Age Defying Ultra Sheer Daily Defense Mineral Sunscreen SPF 30, should it be of interest, and is nice and light and doesn’t leave me looking ghostly like mineral sun lotions can tend to do! Definitely helps keep my skin feeling less ashy and dry than it was.

Hope all goes well with your blood test tomorrow, do let us know. Good idea to check for vitamin D levels. There are natural daylight bulbs that can be put into normal light fixtures too, which might benefit energy levels and vitamin D if it’s constantly less bright where you are. I used to get terrible SAD in winter due to a lack of vitamin D, but daylight bulbs helped a lot. Science seems to agree.

Know what you mean about fatigue, it’s no joke with these MPNs! I’d say it’s probably my worst symptom of Polycythaemia vera (PV), but have found getting daylight into my eyes early in the day helps regulate my sleep a bit better, perhaps you’ve noticed this too. As you were diagnosed relatively recently, it might be that your body is still getting used to the hydroxycarbamide which I think wiped me out to begin with. I felt it affecting me all over my body initially, but that’s faded somewhat. Doing slow stretching exercise helped me get back some energy which got me out and about more which in turn gave me strength to keep on keeping on. I hope your fatigue decreases.

Do please keep us posted about how you get on, @Mrsmac. Keeping my fingers crossed you get great results this week!

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I like Coolibar SPF clothing, got lots of it

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Hi Duncan I too have looked at the andalou stuff and I’m glad it works for you. I’m also pleased you mentioned about the fatigue and the fact I’m new to the game, I hope it gets better as time goes by.
Platelets down by 46 after a three week period, I’m at 296. I’ve asked for my vitamin D levels to be checked next time and all the other vitamins levels, Amanda the nurse says we may try one a day next time but only time will tell. Take care

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Oh those platelet numbers are great, @Mrsmac, in the normal range! You’ll likely note over time your blood cell numbers going up and down in ways that don’t always make sense or follow how well you feel. So long as your haematocrit is lower your blood will be thinner and thus less at risk of clotting.

Keeping my fingers crossed your fatigue reduces too. It may be that the fatigue is less noticeable when your haematocrit is lower. I get a bit of an energy bounce after phlebotomy. And now the sunnier time of year is here hopefully your vitamin D levels will get a nice natural boost!

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Hello @Mrsmac
I just wanted to let you know that because of your excellent question on this thread about sun protection, and the realisation on my part that many people are not told about the photosensitivity risks, our wonderful Health Information team have updated the Staying Safe/Blood Cancer page.
Prompted by your question, I looked into other drugs that also posed the same risks and was shocked to find a few that I did not know were also photosensitive. Those listed on this page are the ones I could fine that are used with blood cancers, so it might not contain every drug that causes photosensitivity, so always best to check with your hospital pharmacy or Haematologist.
Thanks again for posting and asking the questions.
Take care, Heidi.

And to everyone else on this thread, you may just see your suggestions and tips on another website page that is coming soon :wink:

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@Heidi_BloodCancerUK
Thank you I learnt something today
I’m taking co trimoxazole I had no idea about the photosensitivity risks I have never been told about this

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