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Sunshine and heat - love or hate?

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NicholaNichola Total Reaction Points: 9
I have a bit of a marmite situation with the sun and this beautiful weather :(

Ever since undergoing TBI back in 2011 (Total Body Irradiation) as part of by conditioning stage for my transplant, I was always warned to be extra careful in the sun, thereafter...
Well, I'm already fair skinned and freckly so have always had to be a little more careful than others when venturing out into the sunshine, BUT despite being careful, for the last few years, I have suffered with a nasty prickly heat rash/burn on my face (mainly chin and neck area) after being exposed to both the sun and heat.

I am however so paranoid to put anything on my face as when I was on my honeymoon in Mexico back in 2014 I thought I was being extra good by putting factor 50 on my face... but only to learn after spending days in absolute agony, I was actually making my face burns worse by suffocating my face pores with the sun block!! (Now I know why they call it block).

Since then, I have been very careful with what I put on my face, but I was in the sun on Sunday, and I must admit in this 'British' sun I tend not to worry too much... but my rash has come back with a vengeance and although natural Aloe Vera seems to be soothing it for now, I'm petrified of my face being exposed to the sun, which seems such a shame in this lovely weather.

Has anyone else found they are more sensitive to the sun since their treatment? Or do I just have my fair skin and freckles to blame for this?
I would love to hear your experiences and advise on what creams to use going forward...

Thanks,
Nichola x

Comments

  • Rachelj01 Total Reaction Points: 21
    Hi Nichola

    Like you I'm pale and freckly so have never had a good relationship with the sun. (I didn't have TBI) I was made aware at the time of my transplant that the sun can cause or aggravate GvHD even when using sun block.

    I think my skin is more sensitive post all the chemo and still being on some meds even though they are low dosage. I have previously had skin GvHD so I am very cautious with regards the sun, hiding away in the shade rather than trying to sun myself in anyway. It's a draw back of the transplant but I like to think it's helping to keep the wrinkles at bay. :-)

    Rachel
  • TonyHTonyH Total Reaction Points: 10
    Nichola

    Yes, my skin is definitely much more sensitive to sun since treatment. I had my transplant, including TBI, in late 2015 and was likewise told to be more careful in the sun, although I thought as well as the skin sensitivity point this was largely due to being at higher risk of skin cancer. I hadn't heard that it can stimulate GvHD, but from my experience that wouldn't surprise me.

    My starting point was different in that I used to be pretty resilient to sun and could use low factors (& rarely anything in UK) but since transplant I'm using factor 30 all the time and still find I need to be careful and am getting some rashes that appear like heat rash. I generally have patchy low-level GvHD rashes but the sun definitely makes things worse. I've just been treating them with dermovate as I would normally but with mixed success so I'm afraid I don't have any magic solutions!!

    Good luck and hope it calms soon!

    Tony
  • SuePSueP Total Reaction Points: 51
    Hi Nichola and All,

    My skin is definitely more sensitive to the sun since my transplant and my minor GvHD is aggravated. That means I wear long sleeved blouses etc as instructed but I sometimes feel I can't win as my transplant team then told me my vitamin D levels were low as I wasn't getting enough sunlight! I'm now on calcium and vitamin D supplements.

    Sue



  • NicholaNichola Total Reaction Points: 9
    Hi all

    I hope you're all well!

    Thanks so much for this - I actually (and very naively) never even considered it could be GvHD? How long after the transplant can we still develop this?

    Dermovate is also something I never even thought of, thanks for reminding me of this Tony - I haven't actually used this since the early days of my transplant in 2011, but remember it working wonders!

    The rash has thankfully calmed down on my face now... for now anyway, so these tips are great and it's also really nice to know I'm not the only one out there who has to shy away from the beautiful sun :(
    In the grand scheme of things though, it's nothing really, is it ;)

    Thanks again
    Nichola x
  • Dieseldrinker62Dieseldrinker62 Total Reaction Points: 254
    Hi Nichola,

    I'm a Lobster and always have been as I'm fair haired and fair skinned. I turn varying shades of pink to red if I'm out in the sun for any length of time so the high factor sun creams are used fairly extensively particularly after my transplant and after the prolonged complications with skin GvHD.

    That said I am starting to relax a little and whilst I am cautious about being in strong sunshine for any length of time, I don't feel the need to cover up from head to toe. In fact at the weekend, I was pottering around in the garden and sorting out my shed in a vest top and my shoulders got quite burnt.

    I have never tanned easily and as above tend to redden rather than brown, and to a degree I'm fed up of being pale and pasty. I rarely wear shorts due to my white legs . It would be nice to get some colour in them at some point and so next week as I have a week off work at home.

    I don't have a checkup with my consultant until next March but I will probably ask whether I can relax a little on being cautious in the sun as by then I will be over 5 years post transplant.

    Regards,

    Steve
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