10 replies to this topic

[cam_kris]

was dx on March 26^th 2012

White count at dx was 218,000 with every other blood testing's
either sky high or sky low. 

Started 600mg a day on Tasigna on April 18^th

on May 7^th WBC was at 7.2 with all other tests going down.
I have absolutely no side effects from Tasigna.  I feel great

I thought everything was going good, as of yesterday, I went to my dr. for a 10 month checkup and here is what he tells me.

I have had 4 BCR/ABL tests.

  First one was 98.7%

Second one was 1.47 of total of abl   on 7/24/2012

Third one was 2.2% of total of abl in October 24^th equivalent to 5.8% on the international scale

And my last one which was done January 14^th 2013
is 1.9% of total of abl    equivalent to 5.0% on the international scale in which .01% is considered a Major Molecular response 

My dr wasn't that pleased with these results, he thought I would be closer to the .01% this time.  He showed

concern that if I don't get closer in the next check up which is going to be in April, that another bone marrow will be necessary and maybe switching
meds..  I sometimes wonder about my dr. and want to know if this is something to really worry about.  I thought I read that some people never get
to the Major Molecular response and are doing just fine.

that if a person is doing good on their tki meds just to leave well enough alone!  I do not want to try a different tki if I don't
have too. I know you are suppose to trust your dr. in what he says, but on this one I want to have your opinions.

What are your thoughts on this?   He just made it sound so bad....is it? 

Thank you!

Kris

[jjg]

Hi Kris,

People with more knowledge will no doubt come in with more wisdom.... however I would say you've had a response, you'd like it to be faster but it's not a disaster. If your doc was that concerned he could have brought your tests forward and he didn't.

MMR or log 3 reduction is 0.1% international scale i.e. move decimal point down three places. You are around half way to MMR (not sure if your 98.7% is international scale?, using international scale a 1.5 log reduction is around 3.2% which about where you are now). You are getting close to the point where they will not see too much in your marrow.

I guess I'd be alert but not alarmed. (that phase was the catch cry for an Australian security campaign after 9/11 - possibly not a great analogy... )

Hopefully you get some downwards movement in your next test.

[CallMeLucky]

Nothing says you can't get a second opinion but in this case it seems like so far your Dr is right.  You've had a decent response. It it could be better.  If someone can't get to MMR then that is just the way it is and yes they can survive assuming they have made it to CCyR and disease does not progress but MMR has been shown to be good indicator of long term success so if you can get there you should and the faster the better.  With the number of tki drugs available you should not settle.  Since you have no side effects then a first reasonable step might be to go to 800mg per day and see if the nudges things along.

I would say you are not in trouble but you could have a better response and you should try to achieve the best response you can.

[Trey]

Your last PCR would have been done at about the 9 month point.  MMR is the goal for 18 months.  You have responded to Tasigna but are in a plateau at this point.  From what I have seen, that is not so unusual for patients on Tasigna.  I have no clue why, but it seems to be a trend for a number of Tasigna users near the 1 year point, and then the the PCR usually starts dropping again after a while in this plateau.  So the Onc may not be thrilled, but your response is fine so far.  You say you are happy with Tasigna side effects, so I would be reluctant to change course at this point.  There are no negative indicators, only the perceived lack of an extremely fast response. 

[cam_kris]

Thank you both so very much, Needless to say, I am relieved to hear that you have heard of patients on tasigna have had slower responses to get to MMR.  and that it is the 18 month mile marker.  gives me a bit of breathing room. 

I was unsettled esp. when he showed disappointment.  actually scared me. 

I would like to know why, since he isnt that impressed why he didnt kick up the dosage to 800 instead of 600   like you said, maybe i need that little nudge. 

i would like to ask him that question.  maybe i should give him a call monday and see if that is a possibility?

but, for now, just hope and pray things will start showing improvement again in April! 

[Ray99]

Cam_kris

   I had the experience that Trey described.  My PCR dropped to 0.33%IS in four months.  And the reading bounced to 0.33% and back to 0.15% in the next four and half months.  It is essentially flat.  I just got the latest test two days ago.  The result should be back in about two weeks.  I will post the result.  My doctor would like to switch to Sprycel if the next result shows flat response again.  Just like you, I have minimum side effect with Tasigna.  I am a little reluctant to switch unless it is  absolutely necessary.  It is better to stick with the devil you know than the one you don't.

Ray

[cam_kris]

HI Ray!

Thank you for writing!  I am really anxious to see what your results are in the next couple weeks.  How long have you been on tasigna?  I really dont want to switch at all.  I have heard bad things on the other drugs, and I know that each person will react to the tki's differently, but with Tasigna, i have absolutely no side effects now.  Hoping for good news in april, and sure hope that your tests comes back better then ever. just wondeirng, why they wouldnt approach us to take higher doses of Tasigna  instead of switching to another one.  I think I am going to ask my Dr on monday and  see what he says.but then again,   maybe i am jumping the gun here as what trey said, he has seen this happen in other people that are on tasigna.  a slower response.  I dont know.  I am just disappointed as I really thought for sure i was going to be there this last test, so it really blew me away when he said the exact opposit. 

Good Luck and please let me know your results ok!!

Thanks!

Kris

[Trey]

It is not so much a "slower response", but rather a plateau that occurs where the number of leukemic cells remains fairly constant for a while.  I believe this response plateau occurs at a point where the drug has killed off the lower level leukemic cells (lower progenitor level) and the tougher ones to kill remain (upper progenitor and low level stem cells).  It appears to take some additional time to kill off this upper level of leukemic cells.  So the initial response is often much steeper, then sometimes a plateau, and then a more gradual further decline in leukemic cells.

[Ray99]

Kris,

   I started Tasigna on April 2nd.  If I rembered correctly, it is about the same time you started yours.  The latest PCR would be the 10th month test.  I hope Trey is right, my reading would continue to trend down slowly.

Ray

[JoshLee]

I'm just going to chime in here. I started on tasigna in February of 2011. I had a major cyto response by 3 months (22%) fish. At 6 months it was down to 10%. Then at my 12 month biopsy it showed CCyR and my pcr was around 3% int. I hovered around that for 9 months with absolutely no substantial movement in any direction. I held and hopefully continue to hold CCR since Dec. 2011. I switched to Sprycel 70 mg and have seen a slight improvement in my PCR (down almost a half a log). Which I know is still in the margin of error, but it's the most it went in any direction since they've been tracking it so I am fine being blissfully ignorant. Also, I tried escalating the tasigna to 800 mg and it did nothing. Who know what will happen to me, but the only advice I can give in this situation is to do what will make your mind more comfortable. I got a second opinion from Dr. Talpaz, he thought I should switch to Sprycel, so I did. I took control of that situation and whether or not it is really helping still remains to be seen, but having one of the leading experts in the field guide me though this made me feel more secure. Sitting around and waiting is just part of the game for some of us. Will it go up? Will it go down? WIll we progress? We don't know. I pray, and I do literally pray to god that he/she/it keeps me safe so I can be with my beautiful girlfriend, but in the end I have no clue. Some people respond fast, some don't and they don't really know why.

[Ray99]

Josh,

   Thanks for sharing of you thoughts.  I watch my response, but not really consumed by it.  I just live my normal life and enjoy it the same as before the dx.  We don't want the disease take over our life.