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Switching meds

Good day, I need some advice. Just had my doc appointment and he said the my PCR has reached a plateau at a PCR of 0.01 and that if by June it does not do anything he either wants to switch me to TASIGNA or up my dose of Imanatib. I have been on Imanatib for 18 months. I am on 400mg daily and I am blessed enough to tolerate it very well. I would like to know is it better to switch to TASIGNA or up my dose of Imanatib. Thank you in advance.

I would think that doing anything other than continuing as you have makes no sense. 0.01 is a good place to be. 0.1 is CCyR which would also not be a cause for alarm. Im sure others will chime in and reassure you but switching when you are within established guidelines is not necessary. I would keep other TKIs in my back pocket for now and be happy with those results. IMHO it is very aggressive to change anything with these results.

It is, indeed, CCyR.  It is also MMR.  It is, actually, MR4 also known as DMR, or Deep Molecular Response.  It is, arguably, the last accurate count you can discern before "Undetected".  You couldn't really reasonably ask for a better picture at 18 months or even 18 years.  If you have no bothersome side effects, why switch?  Tasigna usually has to be taken twice a day, you have to fast which is annoying, and works very much in the same mode as Gleevec, so the boost you'd presumably get would have to be balanced against all those things. If, however, your personal secret goal is TFR you could switch and see if you can get the holy grail "undetected" and start counting your two years.  Your call, but there is no "need" here.  In reading this over, it sounds snarky, which I certainly don't intend.  Feelings count.  But, at least be assured that you are in a very good, safe place right now with your PCR where it is.

Slight clarification on my post.  I mentioned 0.1 is CCyR not 0.01.  What I meant by it is that even if the result showed 0.1 at this point would not be a cause for an alarm.  0.01 is as good as can be expected at 18 months.  Of course there are those that get lower in that time frame but switching TKI's should be carefully considered.  I know there are five different ones....but that's all there is.  It should not be done without careful consideration and in this case would, in my opinion, be very unwarranted.

Kate73. Thank you for your response switching was my doctors idea. My goal.is not TFR especially since I tolerate Imanatib with minor side affects. The only goal I have right now is to live long enough so my children grow up with a dad. For now that is my only goal. Once again thank you for the advice. I did not know that 0.01 was a good number I thought we had to get to undetectable to be able to maximize our life expectancy.

Mixail, I am a posting member of the LLS CML forum but I browse here occasionally.  May I ask that you post your CML PCR history; it will help in evaluating your situation..  I am bothered that all too often, when a CML patient is either plateaued, or rangebound, oncologists/hematologists want to either increase to the highest possible TKI dosage or switch to the high dosage of another TKI, in an attempt to force an already extremely low CML level, even lower, preferably to undetectable.  Although it is six months away, glad that you are airing your concerns now.  You are right to be concerned but your situation is all too common, and your onc's idea is mostly accepted practice.

Plateaus, or rangebound situations, normally last a year, or two, and typically end with the CML level moving lower.  One of the surprising things that I have observed is that when a plateau, or rangebound situation, has lasted a year, or so, they are not responsive to dosage levels, and dosage can safely be gradually reduced without it having an adverse effect on the CML level.  At some point in the near future your CML level will highly likely move lower and it will do this regardless of the dosage you are on, be it 400mg, 300mg, 200mg, or 100mg, and it also doesn't require a TKI switch.   
Note: not everyone reaches  undetectable but almost everyone can successfully reduce their TKI dosage.

We just had a similar situation by one of our LLS CML members.  He initially wanted to reduce dosage due to extreme fatigue
His plateau:

07/12/2018 0.032
10/29/2018 0.064
01/29/2019 0.022
05/14/2019 0.044
08/08/2019 0.033

His Onc wanted him to switch from Sprycel 100mg to Bosulif 400mg in an effort to get him to undetectable .  We recommended that he get a second opinion and unfortunately that Onc concurred a switch was in order ... fortunately he got another PCR test as part of the second opinion visit.

09/26/2019 0.017

He convinced his Onc. to wait and see until next PCR while staying on Sprycel 100mg

11/26/2019 2.102

His Onc wanted him to switch to Bosulif 400mg.  Myself and others said RETEST

12/05/2019 0.000 undetected

He's working on the dosage reduction.

TKIs are toxic medications and the less we take over the longterm, the better off we are likely to be.

0.01 is a very low CML level.  At this level you have absolutely nothing to worry about from the CML ... the same can't be said for the TKI.  

 

 

Stuck at 0.01 is no need to switch. You are already at MMR4 a deep response. Less than 1% is CCYR by proxy PCR which has virtually the same survival rate as being in MMR <= 0.1%

Many people plateau for a long period I don’t see a reason to change anything unless you have a couple of upticks.

I am on Tasgina. Although the fasting is a pain I've gotten used to it. I take my meds at 8am and 8pm. You have to fast for 2 hours before and 1 hour after taking your pills. I’ve tolerated Tasigna well and apparently it’s x32 more potent than Imatinib or Gleevec. Tasigna is also structurally based on Imatinib. Personally you want to save a switch for when you really need it! And now is not that point.

Alex 

Buzzm1 These are the numbers since I was diagnosed in 2018. Thank you.

6/2018 Pcr 25%
9/2018 Pcr 0.5%
12/2018 Pcr 0.03%
3/2019 Pcr 0.01%
6/2019 Pcr 0.02%
9/2019 Pcr 0.01%
12/2019 Pcr 0.01%

Mixail, when CML has been at a low level, rangebound or plateaued, or undetected, for a period of a year, or so, as yours has, TKI dosage can safely be gradually reduced without it having an adverse effect on your CML level.

Good Luck in getting your onc to agree to a dosage reduction.  Gleevec/Imatinib tablets are splittable.  Alternating a whole and and a half averages 300mg.  Beginning a dosage reduction six weeks before your next scheduled quarterly PCR should eliminate the need for monthly testing that some oncs consider necessary during dosage reduction.  

Not everyone reaches undetectable status but almost everyone can reduce their dosage.

Typically your CML will eventually move lower and will do so regardless of the dosage you are on be it 400mg, 300mg, 200mg, or 100mg.  When CML is at a low level it only requires a minimal TKI dosage to control it.

Buzzm1 Thank you for the advice. Have a Happy New Year.

Happy New Year vivbow!  Please keep us posted on your PCR readings.  Thanks!