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Sprycel dosage reduction

Appreciate feedback on reducing Sprycel dosage. My husband has been on 100 mg since October 2017. It’s doing it’s job effectively  so far and he will has his 6 month ABR  test in a week. Compared to many others his side effects have been minimal but they are definitely building. The main issue is really itchy and swollen eyes which we thought could be hay fever but are pretty sure now is a side effect of the Sprycel. Even taking Zyrtec and quercetin daily they are red and swollen, particularly in the morning ( probably because he takes the Sprycel about 7 pm). It’s definitely getting him down as it’s irritating and very noticeable. 

He asked  his doctor about a dosage reduction to 50 mg as he will get new month’s supply in a week , and his doctor will agree to this. But he did mention the protocol is to reduce to 80 or 70 then to 50.  Any thoughts would be appreciated.

 

thank you 

Louise 

Louise - I was started on 70 mg sprycel and reduced to 20 mg straight away. I am PCRU on 20 mg.

My doctor's approach (researcher in the field) is to find the "minimum" dose which works.

His approach is to start low and work up .... I never made it past 20 mg!

Your husband is fine going to 50 mg. If his downward trend doesn't continue he can always increase dose.

thanks Scuba now he has the go ahead to reduce his dose to 50 we are both quite nervous. He will have his 6 month abr test next week and then thinking he needs to have more regular blood tests because of the reduced dosage? Should that be after a month or sooner?
thank you as always

Louise - what is your husbands last tested PCR level?

There should be no reason why he can't maintain a 3 month testing program. CML is not a fast disease when in chronic phase. As long as his blast count is only a few percent or better still - zero, he should be fine.

the toxicity of Chemo builds up in the body.
Everyday you take the pill it’s toxicity builds up.

The dose is designed to do this. Just high enough
before it makes you sick but potent enough to do a job.

That job is to kill cancer cells. It’s not natural to do this.
However it works and we have side affects.
Side affect are a tuff job.

Romo

He tested 0.743 on 5 Jan test so he will do another test next week . Guess if it’s not good news we have to re think the 50 mg strategy but it also means we will have a good baseline for starting the 50 mg as he will only have been on the reduced dose for a few days when he gets tested. 

He had blood tests done a couple of weeks ago. They were all in normal range apart from hematocrit and hemaglobin which were a little low and hadn’t improved from prior test and RDW which has always been too high and continues to be too high ( supposed to be under 16% and his is at 21%) . His doctor always comments on results when he emails them to us but he seemed fine with those results. Hoping 50 will be a good dose for him. 

 

 

 

 

Got husband's 6 month abr result today - 0.15. His 3 month result was 0.7 so moving in right direction tho a lot more slowly than first 3 months when he had a 3 log reduction. Is this a good pace ?

He started on 50 mg Sprycel on Monday so hoping this will cause fewer side effects but continue to bring him closer to the 0.01 range .

waiting for these results is so stressful. really appreciate the support here.

Hi Louise, 

The ELN Guidelines look for a result of 1% or lower by 6 months to be considered an "optimal" result. He's well, well under this and close to the 12 month "optimal" result of 0.1% (i.e. MMR). The NCCN guidelines are very similar, really.

So he's doing great! Literally optimally.

David.

Thanks David. Good to hear!

The first reduction was so huge I think this just felt a little disappointing. Also even though he is really doing great overall he does have days when he feels a little bit down with the fatigue or the puffy eyes.

Then last night we watched Alan Titchmarsh Love Your Garden on Netflix who was helping a client with Motor Neuron disease, and despite this she was so amazingly positive , and you count your blessings.

Hope you are feeling well on your reduced dose. I feel nervous we jumped ahead on that a bit fast but I guess we will know in 3 months.