Being in the Sun while on Nilotinib/Tasigna ?

Some people's skin may be more sensitive to the sun while taking Tasgna.  I have been on Tasigna since October 2016 and my dermatologist told me to protect my skin by avoiding excessive sun exposure, using high-factor sunscreen (at least spf 30) and wearing protective clothing and a hat.  There is a lot of good lightweight outdoor clothing that has spf protection - try Patagonia and REI.  Tasigna can mess with your skin - rashes, folliculitis, etc, but the long term risk to protect against is skin cancer. If I were you, I'd at least make sure I was fully protected by sunscreen (use the sport stuff that doesn't sweat off as easily), wear a wide brimmed hat and look into the spf clothing.

Hopefully your other side effects will get better over time, and once you reach MMR, you should start talking dose reduction with your doc.  I started on 600 mg/day and hit MMR in 3 months. I have steadily reduced dose since then to 150 mg/day and most side effects are now either gone or much more manageable.  My PCR has been <.003% and/or undetected for a year now.  Hang in therre - it will get better. Enjoy your cruise, but do not take unnecessary risks with overexposure to the sun.  

Philliptibbs - The reason for the warning is that nilotinib (and imatinib and dasatinib) have an off-target effect on the c-KIT kinase, which creates a number of skin-related side effects, like rashes and odd follicular things.  The production of melanin (which gives pigment to the skin) is screwed around with, which is why you see extreme paleness in CML patients and also why they are more sensitive to the sun, since melanin has some protective function against the UV rays.  So, here's the deal:  you'll have to wear sunscreen more than you used to, and you can pretty much give up on the idea of a tan.  I hear you so clearly about who you "used" to be, and I understand why you would be angry and sad to lose the body image that implies a carefree, outdoor life.  But, stop and think:  Everybody wears sunscreen these days.  Deep tans are very New Jersey Housewives tacky, anyway.  (No insult intended, New Jersey!)  Wearing sunscreen doesn't prohibit you from living it up at the beach and on the boat.  If you wear sunscreen and take REASONABLE care not to OVERDO, you should be able to avoid a "sun rash," and the follicular ones (IF they happen) are actually invisible, just bumpy.   And temporary for most people.  You don't have to sit in the shade the whole vacation.  You don't have to wear dorky old man hats with the flap in the back.  You don't have to order a full body UV resistant kit from the weird catalog.  Go and have fun; you'll find out just what you can and can't get away with regarding the sun.  I have found, over the years, that all it means for me is that I burn much faster and easier, and it never turns into a tan.  That's all.  I'm not, like, covered in running leper sores from poking my head out the window.

More important to your happiness is getting on top of the pain, which I hope will be possible for you.  I think it will.

"I might as well just die for real."  Yeah - I know the feeling really well!  But.  No.  Things will get better, you'll see. 

Hi Philip
Its normal to feel frustrated and depressed but actually taking care of your skin in the sun is actually what everyone should do to avoid skin cancer. Just wear a really good sun screen. As long as you reapply regularly you don't have to wear a shirt all the time and you can compromise with a baseball cap rather than a proper sunhat if it makes you happier.

i think having CML is a bit like having diabetes in that you always need to be aware and make adjustments. But I just had a good friend's husband die of a massive heart attack leaving a 14 and 7 year old devastated while another friend is fighting ( with such grace and positive attitude) a really nasty brain tumor . so while I am very sad at times that my husband got CML, I also feel fortunate for what it wasn't. Most of all I am so grateful for the treatment options available, rather than the five year life expectancy he would have been given 20 years ago. Its hard to count our blessings every day but I think it makes life easier. best to you.

Hi Philip
Its normal to feel frustrated and depressed but actually taking care of your skin in the sun is actually what everyone should do to avoid skin cancer. Just wear a really good sun screen. As long as you reapply regularly you don't have to wear a shirt all the time and you can compromise with a baseball cap rather than a proper sunhat if it makes you happier.

i think having CML is a bit like having diabetes in that you always need to be aware and make adjustments. But I just had a good friend's husband die of a massive heart attack leaving a 14 and 7 year old devastated while another friend is fighting ( with such grace and positive attitude) a really nasty brain tumor . so while I am very sad at times that my husband got CML, I also feel fortunate for what it wasn't. Most of all I am so grateful for the treatment options available, rather than the five year life expectancy he would have been given 20 years ago. Its hard to count our blessings every day but I think it makes life easier. best to you.

Phillip, I am so glad you are unloading true feelings here, where everybody understands.  In "real life" there are such pressures to perform - literally, and the ones we make up - and it's so hard with CML.  You will have to sort out a lot of stuff for yourself over the next few years, and I know you will do it.  We live in such a strange place - as in Monty Python, we're "not dead yet," but we're not cured either.  We have no choice but to adapt to what the magic pill does to us and try to keep in perspective that it lets us live.  It's a "not die pill."  (Not my quote, just stole it.)  Have you thought about talking to a therapist?  It's great because you can take all your strongest feelings - rage at the unfairness, resentment that this happened to you, despair and grief at the loss of your old self, fear of the future and the unknown - to someone who listens, doesn't judge or try to fix it too much.  And, when you walk out the door, nobody you know in all the world needs to know what you said.  I have an idea that you are angry about more than just having to wear sunscreen at the beach.  A good therapist could tease that out and let you see and feel it, and face it.

I'm sorry your father was exposed to Agent Orange.  However, set your mind at rest on the point of inheritance - didn't happen.  Not the way genetic mutations for CML work.

As for your government mafia, I suppose everyone is allowed to criticize his own country's stuff.  I'm an American, and I have to say that your National Health looks mighty fine to some of us here.

Keep posting.

Thank you Philip for taking my words in the spirit they were meant :)

I have never been on a cruise so I look forward to hearing about your trip.

Never had a tan either despite living in California for the last ten years. My Scottish skin just burns so I have always been the one with the dorky sun hat!

Realized too late that you must be an American, too, Phillip - I got the Agent Orange reference, but somehow my mind bypassed the Viet Nam reference.  Anyway, I still do admire the National Health system!

Bodybuilders use a peptide calle Melantonan 2 and you only have to go in the sun maybe 3 times and then your tan and you don't burn and you don't have to tan anymore. The Melantonan 2 is given with a insulin syringe once a day for 2 weeks and then twice a week for as long as you want to stay tan. It changes the Melatonin in your skin to make the brown come to the surface. My Wife used it because she is Irish/Scottish and German and has fair skin and always burns. SHe Tanned 3 times outside and then she was tan the whole summer just by taking the shot twice a week. She loves it because she can't tan outside her Dad had skin cancer so it works for her.

Hi, Philip.  Before I was diagnosed I was always out in the sun - hitting the beach, surfing - it was my favorite form of vacation and relaxation and I was always tan.  Now, even though I haven't been in the sun in 2 years, I still have a slight tan line but I feel like I glow in the dark, I'm so white.  I was started on Gleevec and went through Tasigna and now Sprycel and with all of them I have to keep out of the sun due to burning.  3 months after dx and starting meds, I took my son down to Costa Rica for one last surfing trip and even with coating myself with zinc oxide and long sleeves etc. I still was burnt to a crisp - although the surfing was awesome so well worth it.  I understand your frustration - I had muscle cramps, bone pain, the whole lot and really thought my "old" way of life was over, but after 2.5 years I now just wear hats and sit under umbrellas with sunscreen and am able to pick up some color and still enjoy the beach and boating, etc.  Just can't be out for extended periods of time.  I have to say I was pretty depressed as well, but as I saw my numbers go down I felt the trade-off was worth it.  By the way, Tasigna made me feel so cold all the time that even in Florida, I rarely turn the A/C on so being in the warmth is great-so hurry on down!  Stay strong.  

It';s ok you seem like a very honest and down to earth person. It doesn't matter where we live or come from. We are all Gods children and life is hard and I just get frustrated because my wife used to call me Superman and I just don't feel that way anymore. I feel helpless and weak . I just would like to feel half way normal. 

Hooray!