5 replies to this topic

[thedook]

Hi All,

 

DX July 2014 and lurking here for the past year.  I have been on Sprycel 140mg since DX and aside from a few side effects that come and go (the biggest one is fatigue and muscle/bone pain), have been doing relatively well and consider myself fortunate.

 

In my recent test (7/6/15), I went from 1.645% (p210 transcript b2a2) to 2.2% (I had gone from 56.6% to 1.645% previously in the 6 months prior).  My onc is considering a few courses of action as he indicated he would have expected me to come in under 1% on this recent test.  These options are stay the course and re-test in a month, consider switching to another medication or possibly have me see a CML "guru" at another cancer center in the state.  

 

My onc is relatively good although he tends to try and oversimplify things somewhat for me where I'd prefer the details.  He's telling me not to panic, which I am trying not to do but it's easier said than done given I had this feeling I was doing well.  What I am struggling with is understanding whether this just a blip or whether this means the CML may be mutating/resisting and I am facing a real setback/relapse here.  I am not even sure of the right questions to ask because I really had not been expecting this.  I am trying to be optimistic and view this as a minor inconvenience but want to be realistic that it could mean something more serious.  I'd appreciate any feedback from others that may have had similar issues in the past.

[Trey]

Statistically speaking the results are relatively flat over the last two PCR tests.  Continuing on and retesting in a month would be a good plan.  Not much hazard in doing that.  You cannot tell from these results whether anything negative is going.  Often at this point in time (about 12 - 24 months) patients hit a plateau in PCR results which will trend down again later.  We have seen that many times.  So there is no way to know at this point, but the most likely answer is that this is not a reversal.

 

You are taking a fairly high dosage of Sprycel.  Is there a reason for such a high dose?

[thedook]

Thanks for the reply Trey.  First off I want to say I have read a lot of your posts and your blog and they have been extremely helpful.  I appreciate your perspective on this and helps to allay my initial knee jerk feeling that the sky was falling.

 

I have asked the onc previously about the high dosage and his response somewhat falls into that oversimplification mentality I mentioned above.  While my official DX was chronic, I believe I was thisclose to having been in the accelerated phase as I ignored/overlooked many of the clues I now recognize as symptoms (weight loss, fatigue, bruising).  Thus, I believe the onc was looking to hit the CML hard.

 

It had been discussed about reducing the dosage at the one year mark post DX but I am not sure if that's going to happen until this issue resolves.  I am tolerating the dosage relatively well and there hasn't been a ton of data I have found to support why I should be on a lower dosage.  

[thedook]

The rollercoaster that is CML continues for me.   

 

I was diagnosed in July 2014.  My numbers since then:

 

7/24/14:        56.6%

1/15/15:        1.645%

7/6/15:          2.871%

8/25/15:        .42%

11/25/15:      .37%

1/27/16:        .35%

 

I have been on Sprycel 140mg since the start and have been compliant throughout, with perhaps 1 or 2 missed doses during that period (blame it on the brain fog).  My onc (I have since switched to a specialist at a cancer center in my state) has suggested that I switch to Bosulif given that at 18mo. post diagnosis I should have seen MMR by this point at the dose I am on.  My BMB in October 2015 did not show any indication of mutation.  His rationale for Bosulif is that is the next "easiest" TKI to administer.

 

At this point, it seems logical to try a change but I am obviously concerned about starting all over with a new drug and side effects (my experience with Sprycel has been okay for the most part).  Part of me wonders though if there is a plateau of sorts and I should resist the switch for a little while longer.  Plus I have read alot about the experiences here some have had with Bosulif and it obviously concerns me.  However, I am also concerned that delaying a switch puts me at some sort of risk for relapse.  I don't want to rush into the decision and am looking for input from the community.  Thanks!

[CallMeLucky]

I would think it would make more sense to try something more proven like Tasigna. Granted it is not as "easy" to administer with twice daily dosing and the eating restrictions in the window before and after you take the pills, but what's more important a good response or convenience of taking one pill a day? Tasigna has a lot more history behind it. Bosulif is also more similar to Sprycel where Tasigna is more similar to Gleevec. If your response to Sprycel hasn't been outstanding, note that it is still pretty good, a different direction with Tasigna may make more sense. Other than ease of administration has the doctor offered up any other substantial reason for Bosulif? I would ask why not Tasigna.

On the other hand your response to Sprycel is pretty good and there is a good chance in time your numbers would continue to drop. But your dr is right that by now it is preferable to be lower, especially considering the dose. If it were me, I would be looking at Tasigna.

Good luck.

[Trey]

Your numbers do not indicate that a change is required, but of course you can always decide to make a change anyway.  Not sure why Bosulif would be the next choice, although it would be OK, and so would Tasigna.  It is more of a personal decision to either continue what you are doing or to make a change.  No wrong choice at this point.