7 replies to this topic

[Billie Murawski]

As I sit here gimpy and sore from having another squamus cell carcinoma removed from my lower leg next to my shin bone. I've had 3 plastic surgeons remove skin cancer from me and I still have wrinkles. I had a melonoma 11 years ago and 2 lymph nodes were removed. This week I had skin cancer # 9 removed. This is going to be a nasty scar, guess I can't wear my hot pants anymore.

 What I want to emphasize is that I never had anything on my body that would make me think I had skin cancer.

My melanoma was just a freckle on my chest for years and I was in the pool and it looked lighter so I thought it was going away. I had an appt with my pcp about a month later for something else and I casually mentioned how that freckle was going away, Damn the next day I was seeing a surgeon for a long drawn out ordeal to get all the melenoma.

I never had any moles or sores that would make me suspicious, or sores that didn't heal. I have to see a dermatologist every 6 months. And dammit she alway finds something that she freezes. 

I don't know if it's from laying in the sun or cml. But If you notice anything at all go see your pcp, if you call a dermatologist you might have to wait almost a year for an appt.I had a white film about smaller than a dime on my face I was cancer.  Just a word of caution, Love Billie

[hannibellemo]

Billy, 

 

That is such good advice, thank you. I have a colleague that sees his dermatologist every month. His most recent surgery involved skin grafts on his ears; He will be off work for 4+ weeks. 

 

I don't know why he is so susceptible, but he has had many, many surgeries to remove skin cancers.

[kat73]

Skin cancer is another of those pesky gray areas when you have CML.  On the one hand, everybody has near and dear elderly friends or relatives who are always walking around with bandages on their ears, then their nose, the next week their forehead, etc.  So, when we first start getting into that rash of skin cancers, it may only be because we're getting old.  It does happen.  ON THE OTHER HAND, it sure is funny how one can go his/her whole life, NOT sunburning, wearing sunscreen, and boom, after a few years of taking TKI's it's just one basal cell carcinoma after the other.  I guess what bothers me the most - as it always does - is that it sure seems that NOBODY in the medical world is interested one tiny bit in finding out.  It seems that if two criteria are met, then they stop worrying and stop caring.  Those criteria are:  does it kill the patient, and is there a fix.  Skin cancers, by and large, of the kind we seem to get, fall into those categories so, meh, they say - just keep carving!

[Melanie]

That's good advice Billie! Having grown up in the desert and worshiping the sun when I was younger, my dermatologist was always freezing or cutting something off me during my 6 month check ups. Once I was dx and on a TKI steady for a couple of years, my visits increased and so did the freezing and cutting. My dermatologist used to work in the transplant center so she's very familiar with TKI's and feels they make more susceptible to skin issues and cancers. I was seeing her monthly, but now we're down to every two months. She also is very diligent about getting rid of any warts, saying they're a virus and one more thing our bodies are trying to fight off when it needs to have all its strength to fight the CML. Then of course there's the age spots that will flare up and get scabby. Most the time I can't tell anymore if it's an irritated age spot or another basal cell carcinoma popping up. So, as Billie says, when in doubt, get it checked out!

[gerry]

From what I understand it only takes one bad sunburn in your lifetime to increase your chances. We are pretty aware of the dangers of melanomas in Australia. There are some very expensive drugs available now, which sometimes work. Best advice is to get your skin checked if you have anything that is new or changed on your skin.

[beno]

I've wondered about this myself, just from the fact that since I started Sprycel, I sunburn so easily.  If I still lived in New Mexico, I'm not sure I could ever leave the house.

[cmljax]

I was dx in late September 2016 and started on Tasigna 300mg twice a day. I had three confirmed squamous cell skin cancers in the following 3 months plus an additional 20 some suspicious spots frozen by my dermatologist. I have never previously had skin cancer, only a few precancerous spots removed. She thinks this is being caused by the Tasigna and on December 14th she recommended I start Soriatane, but I declined after reviewing the side effects profile and decided to seek a second opinion. My oncologist does not know what s causing this and says there is no known link between Tasigna and any other form of cancer; my PCP thinks it is my compromised immune system from the CML and he suggested I defer on taking the Soriatane.

 

Since December 14th, I have a a significant decline in the number of suspicious spots, bumps etc, so I was beginning to think that the situation was improving. Yesterday I saw a dermatologist as Mayo. I showed her the only 3 suspicious spots, all on my left lower leg, that had developed since December 14. She suspects more cancer and biopsied all 3 sites.  She was ambivalent about Soriatane, but did offer an alternative with fewer side effects - Nicotinamide (also Niacinamide) 500mg twice a day,  which is a Vitamin B3 derivative.  I started that last night. An Australian study in 2015 showed statistically significant decline (23%) in non-melanoma skin cancers in group using Niacinamide versus placebo.

 

Dealing with the skin issues and CML is pretty tough, but I do not want to stop the Tasigna since I reached MMR in just 83 days!!  If these last 3 biopsies are positive I am going to contact Novartis (maker of Tasigna) directly).

[thatguy]

Im sorry for you... It could be due to heightened awareness (those lesions arising without previous attention), or maybe there is a link to the drugs, but in my CML induced hypochondria, I've found that on the American Cancer site (I believe) there is a stated increase in risk of oral cancer with cml... turns out most oral cancers are SCC...so maybe just because of the hospitable environnent in our bodies. I feel like my previous lifestyle likely contributed to the CML, and potentially other cancers down the road, if I'm not lucky.

I also know that my doctor told me at diagnosis to stay out of the sun.

As I have stated earlier on the forum, since Tasigna and Bosulif, I've noticed more bumps, slower healing, and delicate mouth tissue (I'm 30 by the way).

Needless to say I watch my body like a hawk now, and pretty much freak out over zits. But hey, we were in that lucky .001% once, right?