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Dropping Sprycel myself?

Hi again,am feeling more and more unwell 50mgs Sprycel.Hot cold chills,bone pain debilitating fatigue and depression.My Haemotologist won’t let me drop Sprycel,even though have been undetectable last 2blood tests.Should I drop meds myself and see how they are next bloods?Haemo said they first wanted to measure amount of Dasatinib in bloods first but that’s not for months.Am bit stressed and would appreciate any input.Thanks heaps.Tanya

Have you had your thyroid checked?  I am having similar symptoms but not as extreme as yours.  I just got a thyroid test back and I'm quite low thyroid, which explains much of this for me.  Since I was not having significant thyroid problems before starting these drugs, and because they are known to affect thyroid (article) I'm assuming it is the TKIs.  I'm currently on Sprycel, 50 mg.

From what I've read you need to be undetectable for two years before dropping the TKI.  I'm sure more knowledgeable folks will chime in here.

Good luck.

Maria

Tanya,

I can't advocate that you should take a dose reduction into your own hands, but if you do decide to you should tell your doctor. If they think you are taking Xmg they will treat you as such. Even if they don't agree, they will prefer to know what you are actually taking.

But on the face of it, if you have been undetectable for a while a drop to 20mg is certainly worth looking into.

David.

Tanya,

I strongly support David's recommendation. I am currently taking 20 mg sprycel - every other day. I am undetectable for several years now. I had thyroid issues a few years ago when I actually stopped taking sprycel for my first attempt at treatment free remission (sort of worked). Stopping sprycel led to thyroiditis which resolved on its own, but not until several doctor visits for all kinds of tests. They didn't know what to do except give me thyroid hormone temporarily. It took a few months and then back to normal. You should have a thyroid panel done to verify your status (T4, T3, TSH, etc.). In addition check your vitamin D level (low can lead to depression and your other symptoms) as well as take a magnesium supplement (400 mg per day).

Anyone who is "undetectable" taking sprycel should definitely consider lowering their spyrcel dose to - 20 mg. Let your doctor know you very much would like a dose reduction to 20 mg to test that your other symptoms go away. You should also test your PCR once every six weeks for a few cycles to verify you do not lose your status. I have a suspicion you will be fine and will continue "undetected". If you do lose your status, then increase dose back up to where it was - but I don't think will be necessary. Once on 20 mg and successful, you would return to your current PCR schedule. My PCR schedule is every six months.

Advise your doctor that you know other patients who are "undetected" on 20 mg sprycel with tremendous success. You would like to be one of them. Show him this article if they need references: https://onlinelibrary.wiley.com/doi/full/10.1002/cncr.31232

Thank you very much for yr response Maria,will ask Doc to check my thyroid.Is it checked via blood tests?

Thanks heaps Scuba and David,wonderful advice when I see Haemo in Jan will insist on drop to 20 mg Sprycel if am still reading undetectable.Appreciate the responses and support:)

Simple blood test.