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Stopping Sprycel

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My onc said I am in deep remission. 

I’ve been in 100mg Sprycel for over a year.

I have, From the beginning lots of skin eruptions including squamous cell. I asked him if perhaps they could reduce the dose to see if the skin eruptions would stop or at least lessen.

 

from the beginning lots of skin irruption‘s including squamous cell. I asked him if perhaps they could reduce the dose to see if the skin irruption‘s would stop or at least lesson.

He said perhaps you would consider it if my skin was dripping off. I said I read that perhaps you could stop taking it if you achieve deep remission or whatever they call it, he said perhaps in a year you can go off meaning another year.

he said perhaps he would consider it if my skin was dripping off. I said I read that perhaps you could stop taking it if you achieve deep remission or whatever they call it, he said perhaps in a year you can go off meeting another year.

Then, Why can’t I go off now why can’t I go off now?

 

Tia

-Ted

Ted - Read the paper linked below

Deep remission does not mean your CML is gone. First achievement of DMR means your CML burden is just below the ability of the PCR test to detect any bcr-abl. Continued therapy will continue to drive CML lower and lower over time even though it can't be measured. Data suggests that after 50 months of continued therapy while in an 'undetected' status affords maximum chance of success; although many have success after waiting just 36 months. The incremental improvement in success odds between 36 and 50 months is a few percent.

Hi Ted:

I started on 600 mg Tasigna over 3.5 years ago and during the first few months had skin issues like yours, with around 15 confirmed squamous cell skin cancers removed and over 40 precancerous lesions removed over a 3 month period.  I reached MMR in less than 90 days and began to "fight" my onc for dose reduction, which he begrudgingly agreed  to and so I reduced to 450 mg per day.  I haven't had a single skin cancer since and only 2 precancerous lesions removed.  

Due to other nasty side effects, I continued to reduce dose during my first year of therapy to 150 mg per day which I am still on today.  I have been in DMR/CMR for nearly 3 years. 

So if I were you, I'd talk with my onc about dose reduction before attempting to stop.  Data from the Destiny trial suggests that tapering to 50% of original dose for a year or so before stopping actually increases the success odds for TFR.  As Scuba points out, the data also suggests that the odds of successful TFR also increases with time on treatment and time in DMR/CMR.  My current thinking is to stop in the fall of 2021, 5 years into treatment provided I am still in DMR/CMR.

Good luck

 

cmljax - I was wondering what your lesions looked like?  I have noticed a couple of things on my skin.  Nothing big but just wanted a little perspective

Thanks.

Perhaps just go to the end. 

https://photos.app.goo.gl/G2zM4jgEm3dYfha18

Hi,

Thank you, very much. 

Best Regards!

Hi,

Thank you, very much.

Best Regards!

Thank you ALL very very much.

I had not realized there were replies until a recent email notice. 

Again, thank you!

I have read at least one paper talking about Dasatinib as treatment for Squamous Cell skin cancer... and possibly read something about it may also cause it. 

Derms don’t care (unfair) they just cut it out.

I skipped taking one off my left inside shin.

I’m thinking of not doing it. That is, that it won’t metastasize. ? Idk. It’s been there for at least a year or years.

Yesterday, I noticed something like a pimple or a bubble near that area a few inches away. Perhaps that’s another squamous. 

They did a Moh’s surgery on my lip. That suddenly appeared as a blister like rise of the skin.

Otherwise, I get a lot what they say is Grover’s disease, but I do *not* believe that Dasatinib didn’t cause these ever present in one area or another, sometimes bleeding, bumps.

Also, on my head and neck, at times.

Earlier in treatment, my facial hair, especially above top lip, would feel like when moved splinters of glass. I believe that was not the individual hair but the hair follicle, that has largely dissipated.

Sorry about the link. I guess I coulda selected just a few.

 

I'd like to ask: If this is what my largest organ(?) the Skin looks like (not unbearable), what do my insides look like? and, Is that dangerous?

I have no comorbidities.   oops, I also have CLL, which was dx'd earlier than the CML. 

My markers are (were?) ... across the middle... not worst, not best.

So, due to CLL, my lymphs and wbc sit higher. 13,000. at treatment (dx) it was 170ish. red cells all ... pretty good.

Remaining symptom or side effect: fatigue, weakness. appetite swings. skin/facial/body/scalp. idk :))

 

Thank you