Home Forums Melanoma Diagnosis: Stage IV Zelboraf + sun + summer =?

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  • #21168
    odonoghue80
    Participant

    Hi, I’ve been on Zelboraf for just over 3 months and I’m starting to feel much better, getting out more, etc, and now that spring has arrived, I am concerned about how to deal with the supposed photo sensitivity? I am typically very active, athetic, and outdoors often. One of things I’m concerned about is skin care and sun protection this spring/summer.

    Any recommendations from people on Zelboraf and how you dealt with this hurdle? Is the sun sensitivity as bad as I’ve read? Do you constantly wear sunscreen? Any good sunscreens that don’t smell, feel ok on skin? Also what about a separate sun cream for face?

    Also, I’ve lost a lot of body hair and have noticed general dry skin can anybody recommend a good daily lotion? I have a prescription cream from January when I had a full body rash but that seems a bit much for now.

    Any input would be helpful.

    Thanks,

    Shane

    #59969
    Dick_K
    Participant

    Shane,

    I’ve been through three summers on Zelboraf; believe what you have been told or have read. First thing tomorrow when I get to my computer I’ll post details of what I have done. (Typing on my kindle is the pits.)

    Dick

    #59970
    jmmm
    Participant

    It’s as bad as you’ve read and more. My husband has been on Zelboraf for 18 months. Last spring/summer was hard. We have 3 young boys and we’re an outdoorsy family. Mike would wear a floppy hat, 50+ sunscreen, lip balm, etc and still get horribly burnt. Even tents, trees, etc. Couldn’t block the sun enough. He had to be indoors or under hard stand shade anytime between 10 am and 6 pm. He would also get sunburned through the car windows! He ended up leaving a jacket in the car to cover his arms, plus one of those baby sunshades to put on the window. It made for some VERY long days with our boys. We learned to adapt and by 6:30 or so every evening, we would head out to enjoy our outside time without the sun. Just an FYI…at first we figured it wouldn’t be as bad as everyone said. He was outside with sunscreen and a tent for a few hours during the day and ended up with sun poisoning…huge blisters that took weeks to heal. Don’t chance it…cover head to toes with clothing or stay inside. Don’t forget the lip balm…reapply every hour or so. Best of luck to you. Zelboraf is Mike’s miracle drug! Worth every side effect it causes.

    #59971
    Dick_K
    Participant

    Shane,

    My favorite hobby is gardening. I’ve learned to work around the sun and depending on what I’m doing, I haul a canopy around with me. It’s only 10’ x 10’ but I can erect and move by myself so if my wife is working, I can still be outside working. The material is claimed to be 100% effective for blocking both UVA and UVB.

    For sunscreen I finally settled on a Johnson & Johnson product, ”Aveeno”, “Continuous Protection Sunblock Lotion”, with a SPF 55; it’s not greasy and it does not smell. Look also for a lip balm with a good SPF, I go through different ones (a combination of use and forgetting to take out of my pocket when I do the laundry, ha) and I don’t have a favorite.

    I’m also a big fan of SPF clothing, even on a hot day, wearing long sleeve shirt and pants is not too bad. Even if I’m just walking out to the mailbox, my hat, a wide brim Tilley, is on. Last summer I found an extra wide brim that fastens onto my bicycle helmet. It looks a little goofy (well maybe real goofy) but gives a lot of protection.

    I also got the side windows of my truck tinted and the film used claims to be 99% effective in blocking UVA and UVB.

    One last comment about the sun, for me, this is one side effect that has not diminished over time. The other day I was lazy and wore a ball cap instead of my trusted Tilley and got a burn on my face. I have a doctor appointment this Wednesday and I hope it’s not visible then. I have such a good relationship with her and her staff that I’m sure they’ll have a good laugh at my expense.

    You also asked about body hair and dry skin. I lost ALL body hair but not on my head or face. The hair on my head has changed texture and most body hair has returned but much thinner. I have used “Udderly Smooth with Urea” cream on my skin to eliminate the dryness.

    I hope this information is useful but I hope even more that you have a long run with Zelboraf. Best of luck to you.

    Dick

    #59972
    jmmm
    Participant

    Dick…a couple of questions for the “Zelboraf expert”…can you share the brand of the shade tent you use….we tried one, but it didn’t work…Mike got burnt in it. It would be great for him to be able to be outside during the day. Any recommendations on UV clothing brands. I’ve been looking around and they’re expensive…I was hoping to get 1-2 long sleeve shirts for Mike to try this summer, but I’m trying to figure out if they’ll work better than just a regular long sleeve shirt…is it possible to wear them in the summer? We live in St. Louis….summers are 90+ degrees with 90+ humidity. I just wonder if they keep you a little cooler than a regular t-shirt. So many questions…I love the sharing of information here.

    #59973
    odonoghue80
    Participant

    Wow, thanks for the updates. This makes me really nervous.

    #59974
    Gilly
    Participant

    really take the sun sensitivity seriously – my hubby is never without a hat – your life is seriously unpleasant if you dont take proper precautions. lip salve especially – it sounds over the top but its really not worth the consequences ,,,

    #59975
    NZjanet
    Participant

    Hi Shane

    I’m also new to the Zelboraf. I started early January, so I’ve been on it for about as long you have.

    I live in the Southern Hemisphere and we’re just heading into winter now. I had such a bad toxic reaction that thankfully I hadn’t felt like doing much up until a few weeks ago. BUT, about mid March I ended up getting a severe burn (welts) on my nose, and blisters on my lips in heavy cloud and rain!! I had a rain coat on, but of course no sunhat! I learnt the hard way.

    However, I managed a swim in the sea about a week later, my one and only this summer, but what a palaver! I covered my feet, hands and arms with a 70 SPF neutrogena spray which is very easy to apply. I wore a rash top, and also a small cloth hat. I was too weak to dive through the waves, or body surf, but it was worth it. I managed no burn which was a relief. That is what I miss the most – swimming in the sea!

    Dick – thank you for your tips. I thought cycling was out of the question, but maybe not…..

    Anyways, all the best Shane. Don’t forget to cover the feet. They’re easily forgotten.

    Janet.

    #59976
    jmaher157
    Participant

    I race motorcycles and ride all the time. I tell my doctor I race for him since the full leather race suit protects me from the sun. :) I also shoot skeet competitively. The best sunblock I have found is one called Scape, non-greasy and does not run with sweat. I wear a floppy hat in the sun and a long sleeve shirt. This may sound counter intuitive, but slowly get a little sun for a little tan. I have found that if I don’t, I am more susceptible to a bad burn. Also, don’t forget lip balm. Nothing worse than sunburned lips. You can definitely get a burn through the windshield of your car. The other thing I have found is that I am more susceptible to the heat, so this year I am spending time in the sauna at the gym to try to get used to it. These things work for me, so keep in mind you will have to find what works for you.

    Joe

    #59977
    abdorma
    Participant

    My husband was on Zelboraf from August until late January and while he lathered on the SPF, has a Tilley hat which he wears religiously and has SPF clothing, he did not experience the sun sensitivity side effect that many folks have. I would certainly heed their recommendations until you see how you react.

    My husband also lost alot of body hair and had extremely dry skin once he lost the horrible skin rash. He uses CeraVe skin cream which the dermatologist hot line nurse recommended and it is really nice. Isn’t particularly heavy and is easily absorbed by the skin. Prior to that, he was using Vani cream which is a good moisturizer but it is very heavy and hard to completely rub into the skin.

    Good luck and enjoy your summer!!!!

    #59978
    Dick_K
    Participant

    Jmmm, the canopy I purchased was by Quick Shade, a ‘Quick Shade’ Weekender 64 Instant Canopy, purchased through Amazon. I’ve tried a couple of shirt manufactures and the one I like the best is from L. L. Bean, their ‘Tropicwear Shirt’. At llbean.com, just search on spf. As to my hat, in my opinion they do not get any better than Tilley.

    Janet, the brim I use on my bicycle helmet is made by Da Brim.

    Dick

    #59979
    Mom2Becca
    Participant

    What great information! Becca and I were just talking about this subject on the phone 10 minutes ago. You guys are super!!

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