6 replies to this topic

[LouiseS]

I wanted to share my husband's testing three months on from diagnosis. I am sorry I haven't set up a signature yet and would appreciate advice on how to do this.

We were really happy with his results as was his doctor. He has been on 100 mg of Sprycel since first week in October. Almost no side effects apart from a very occasional headache if he didn't drink enough water that day and he is getting some spots on his chin. One weekend only feeling hoarse and hearing affected as well. But otherwise feeling now how he did 6 months before diagnosis.

At diagnosis his wbc was at 239.6 , his spleen was extended and his ABR was at 89.427 IS. This week's results show that having fallen to 0.743 (IS) All his other results show everything is where it should be or almost there. Platlets are at 176 on a range of 150-400 k/ul.

His doctor is hoping that he will reach 0.1 in 3 months when he is next tested.

I was really keen that he reduce his Sprycel dosage asap but is it best to wait another 3 months and hope he can reach MMR before reducing, as long as he continues to tolerate Sprycel as well as he has done so far?

Finally thank you to Trey, Scuba and Buzz and everyone else who has answered my questions or just allowed their stories to be told here. Finding this forum has provided so much knowledge but also so much comfort, esp in the early dark days when he was first diagnosed. I am so thankful and grateful.

[Buzzm1]

Louise, your husband is doing great.

 

to add his history/status into your signature

upper far right, click on the drop down menu after your name..

select My Settings ..

on left-side, select Signature

scroll down, enter history/status info, Save Changes

thanks for participating.

[Lucas]

great result! 2 logs in 3 months is awesome!

[Trey]

His doctor is hoping that he will reach 0.1 in 3 months when he is next tested.

 

That is very optimistic.  Most do not achieve .1% (which is MMR) within 6 months.  12 months is more reasonable, and hope for better.

Edited by Trey, 09 January 2018 - 09:48 PM.

[scuba]

Louise,

 

Your husband is doing great. He should continue to experience a sharp drop in PCR below 0.1% likely by next test. 

 

Cutting dose now is certainly an option. It may or may not slow his response. He might very well continue to see his PCR drop significantly even on a much lower dose (as I experienced). Staying the course for another 3 months and then verify PCR below 0.1% is a good plan. Cutting dose to 50 mg and "test" cutting dose still enabled him to have significant PCR drop is also a viable plan. It is a question of how comfortable he is in doing so. I would not go below 50 mg until after PCR < 0.1% - then dropping to 20 mg is even possible.

[kat73]

Louise - My doctor would disagree with cutting dosage unless side effects warrant it, and then only if sufficient control of the CML has been established. 

[cmljax]

Louise:

Look at my signature.  Due to multiple side effects, my oncologist permitted 3 dose reduction during my first year of therapy.  The first was after I reached MMR.  He would not have allowed any dose reduction had I not had these multiple side effects.  Different oncologists have different approaches to dose reduction.  My unprofessional opinion is close to Scuba's  and was significantly influenced by him.  I believe that we should be on the lowest possible dose that allows us to maintain acceptable response (probably .01% IS or better).  We are incredibly fortunate that TKI's exist, but they have potentially significant other adverse effects that can be reduced in the short and long term by dose titration. 

 

As everyone else has said, your husband is doing great.  As long as the adverse side effects are minimal, I'd give the 100 mg dose more time to get him to at least .1% before discussing dose reduction with his oncologist.  Good luck to him and bless you for being his caretaker.