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Skin Cancer - 7 and counting in 4 months

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I was dx in late September 2016 and started on Tasigna 300mg twice a day. I had three confirmed squamous cell skin cancers (SCC) 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.

Starting in mid-December, I had a significant decline in the number of suspicious spots, bumps etc, so I was beginning to think that the situation was improving. On January 10, I saw a dermatologist at Mayo. I showed her the only 3 suspicious spots, all on my left lower leg, that had developed since December 14. She suspected more cancer and biopsied all 3 sites.  All 3 biopsies came back positive for SCC. 

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.

From January 10 until early February, There were no new spots.  Then in the first week of February, 3 new spots appeared. I went to my Mayo dermatologist on February and 2 of the spots were precancerous and were frozen.  The third was biopsied and came back positive for SCC.  So that is now 7 SCC's (all superficial or superficially invasive, so not serious except for the number and frequency). My dermatologist is still not ready to start Soriatane yet and neither am I.  The trend line of overall activity is still down.

There is very little on the internet about CML and skin cancer or Tasigna and skin cancer (only one case study of a 73 year old woman with 8 SCC's in first 6 months - she went on Soriatane but there is no update on her current condition). I am a member of the LLS CML support group and there are a few mentions of skin cancer, but non as profilic as mine.

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!!  Has anyone else had anything like this experience on Tasigna or any other TKI? 

What do u spots look like and is your skin very dry? Are they confined to your legs ?

The ones that have been malignant have been different shapes and sizes, but mostly raised red bumps. They don't hurt or itch. They have also been superficial. 6 of 7 on lower legs

Oh also, my skin is a little dry but not terribly so.  I use a moisturizer on arms and legs daily

Just had 2 more biopsies and awaiting the results, but most likely #'s 8 and 9. At this last appointment, I asked my dermatologist why I was only getting squamous cell skin cancer and she said that cases like this are usually medicine related.  I think she was hesitant to blame it directly on Tasigna as I think she wouldrather my onc do that. Anyway, up until then, she had said the cause was some combination of suboptimal immune system, Tasigna and long ago UV damage.

All I want is a straight answer but it still eludes me.  Guess I am leaning towards it being Tasigna, but why aren't there more reported cases like mine?  Grateful to be at MMR, but need to develop a strategy to deal with the skin cancer that is more than a mere shot in the dark.

There have been well over 100 views of this post, but only 1 reply - please reply if you have any experience even close to mine.  Thanks

I have sent you a private message today.  It seems that there is some evidence of nilotinib and SCC but it is rare. You have a really good response to TKi therapy so you can be confident that you have responsive disease. My thoughts are that you consider a change in TKI ... maybe dasatinib or bosutinib? and continue supplementing with high dose niacin (B3) as well as other B Vits. 

Sandy

After a lot of discussion with a lot of different people, some on this site and some on the LLS site, I decided to press my oncologist for a dose reduction from 600mg - 450mg after just 5 months on therapy.  I argued that since I hit MMR in less tham 90 days, that I was a good candidate for a small dose reduction now. He hemmed and hawed something about this being unprecedented, but in the end he agreed subject to a PCR test now and each month after dose reduction for at least 2 - 3 months. I hate waiting for the test results, but I understand the need to be monitored more closely, so I agreed.

I had my blood drawn for PCR on Friday March 10 and started my 25% dose reduction that same night. This evening, I got my PCR result from last Friday's draw and it was .006% (MR 4.22), so really really good. It is my hope that I can at least maintain this level with the dose reduction and that the combination of this reduction along with the Niacinamide (1,000 mg/day) I started in early January and an ever improving immune system will result in a slow down in the skin cancers.  If I maintain this PCR, but the skin cancers do not improve, I would then plan to switch to Sprycel but hope to start at no more than 70 mg.

Keeping my fingers crossed!!

I am happy to report that after approximately 1 month on reduced Tasigna dose (from 600 to 450 MG), my PCR improved again from .006% to <.003%.  The incidence of skin lesions has also decreased during the past month. Not sure if this is related to dose reduction or just my improving immune system and/or the continuing impact of the Niacinamide regimen.   It's not a trend yet, but it is encouraging. Not much change in other side effects other than a slight improvement in overall GI health and my hair started to grow a bit again. New side effect that started about a month ago is recurring mouth ulcers and short episodes of swollen salivary glands - ENT specialist thinks it's the Tasigna causing this but I am having a neck CT today to rule out stones or a tumor.

That must all feel encouraging - an excellent response to CML in a relatively short period of time.

Keep us up to date!

David.