11 replies to this topic

[cam_kris]

Hi!  Well, went and had my checkup on monday,  it's been a couple months since I have seen my onc.  The last time I was there he told me that when I came back today that we would know more on how the tasigna is working.  He told me that my blood count, don't remember what the test was but it had to b sent to mayo for the results they couldn't get the results at the clinic here because apparently it is a very precise test.  When I was dx in march 26. Of this year, he told me that I had 96% cancer  in my bone marrow.  And he told me it has to go down to .01%. But he also told me that today we would know if the tasigna is working.  I have waited for  this day for so long praying it was working.  so I go to my appointment and he tells me it is 1.47%. I was overly excited,  wow it went from 96% to 1.47 it's a miracle !!  Then he tells me that those numbers don't mean anything until I get it below .01%!!!!   Devastated to say the least.  Then he tells me that I have to have my bone marrow biopsy in three months and THAT will tell us the story.  He said when I was dx that my biopsy showed 20 out of 20 had cancer cells.  And if these don't go down I have to go more aggressive therapy.  Anyone out here know what the sam hell is going on?  I just wish he wouldn't get my hopes up so and then when then-date comes of progress there is always  another test to do.  So right now I am back at square one.  I know nothing.  He did tell me that only 3% don't reach the goal he is looking for.  He is very hard to understand so I really cannot say the response he is looking for.  I wish I would of wrote down but I am sure you understand what I am talking about.  Well I am just wondering if anyone out here has gone thru this and what ur outcome Has been and any advise u might have besides wait for another 3 long months.  I really don't like this roller coaster I'm on

that since I started tasigna my WBC went from 210,000 to 5,100. All blood work is just about normal,  my numbers went from 96% to 1.47%.  Doesn't this mean anything??

o                                                        I guess I'm just looking for that wow moment, so u guys that are on tasigna or know anything about it,  is this how it went for u?  I truly would like to hear ur story on ur progress, I just want to know  what's happening to me is this normal? thanks again.  Kris

[mariebow]

csm_kris I am kinda like you, I was dx in this past january, but actually did not start on the tki's until about march. go back to the onc thelast of the month, I was 1.50 I think. 

[Trey]

Kris,

Most of us had the same results as you at diagnosis (100% and 20/20).  Your PCR shows a significant drop, so of course it means a lot, in fact it is nearly a 2 log reduction which is very good so far.  The .01% goal your Onc talked about should be .1%  Everything your Onc told you was wrong.  Sorry to say that you knew more than he did. 

[chriskuo]

You are making faster progress than most people and are ahead of the guidelines.  You are not in imminent danger and have lots of options going forward.  You will feel better if you can distract yourself more with activities.

[cam_kris]

Thank you everyone, that is All I wanted to know, am i on track or is there a problem here.  i am so glad (I know that sounds bad) but happy to hear most had same results, 100% and 20/20

he just made it sound so bad and that my road is a long one.  Now I can relax and just keep on doing what i am doing!.  Thanks again!! Kris

[Sneezy12]

I would change Oncologists if I were you, and he told me that. Frank

[Susan61]

Hi Kris:  Its not good when you do not understand what your doctor is talking about, due to him possibly having an accent or just not explaining things in simple terms for you to understand.  Why don't you take copies of all your test results and go get a second opinion just for your peace of mind.

     You are going in the right direction with your response, but its so important for you to know what is being looked for.

To know if your getting to the point where you should be.

    The detailed test that he is most likely referring to is your PCR Blood Test.  He needs to be more clear with how he explains things to you.  If you do not understand him, then tell him he has to explain so you understand.

    I think Trey just put your mind at ease with his answer.  You can relax now.  Its so important to have a good relationship with the doctor who is caring for you.

[Happycat]

Kris,

I'd say your doctor is using the following logic: 

     1)  BMB must be 0/20 cells to be considered CCyR.   He is discounting the PCR results, in favor of the BMB results you have yet to have.  A PCR that shows           2 log redn is thought to be equivalent to CCyR.  But your doc obviously doesn't trust PCR to show CCyR.  (Some consider a PCR to determine CCyR to           be like using a microscope to examine a basketball.  It's just the wrong tool to use.)

     2)  Once BMB is clear, then he'll consider using PCR results to judge your status.  I think he is equating a 0.01% PCR as MMR, which is the level he hopes           you will get to eventually.  I've no idea if that is the correct MMR number or not for that lab, since it will depend upon whether they are on the International           Scale or not.

For now, consider yourself practically CCyR and on your way to MMR. 

Traci

[Antilogical]

Interesting - I think my onc must also be using the same logic. At 3 months, I only had a PCR test, which showed 0.1% with 2.3 log red'n. I am not due for another BMB until next the 1-year mark. I'll ask about this at my next appointment.

[Tedsey]

My two cents.  I have been stuck at .068ish for 9 months now (and higher than that before.  AND, I have been dx 2 years and 9 months).  Although it is not MMR for me, my onc considers it still low and is satisfied.  The oncs I have seen do not use FISH, but karyotyping (20/20) to determine CCyR status.  Also, they both use the PCR to look at the basketball (hee, hee, Traci, I like that one).  It appears that your onc is misinformed.  Who wouldn't love to be .01% or below, esp. just after dx.  At your stage in the game, it appears to be too lofty of a goal.  I have yet to reach .01%.  It appears I am the only one who worries.  I am so grateful for this group here.  I could have spent many more days depressed when I learned of my reccent  PCR value some days ago.  Hang with this crowd.  You will always find wisdom along with hope.

Take care.  Sounds to me like you are doing well.  Keeping fingers crossed it just keeps getting better and better for you,

Tedsey 

P.S. I don't know what your onc is reading, but I cannot believe only 3% don't get there.  Sounds like the first onc I saw for 6 months.  She constantly told me I was doing horribly after Gleevec because did not reach 0, (And she insisted she was NEVER going to switch me to another drug.  Therefore, if I did poorly, it was off to a SCT----talk about torture).  Some of our oncs' inexperience and ignorance regarding CML can really mess us up (mostly our minds, that is, which is probably 99% of the torture having CML, or maybe 90% for those of us who have had extra complications). 

[Elizablest]

Regardless of what your oncologist knows or thinks he knows, I am concerned about his manner of explaining things to you. I am presently in the process of changing over to another onc. I live in an area where there are only three oncologists offices, so I have little choice unless I want to drive a long way to Stanford University (which may be worth it in the end). My onc doesn't really explain much at all. Doesn't use the terms PCR or CCyr or anything like that. Just says he's very happy that things are "back to normal" but when I get my hands on the blood reports they are not normal, yet. So, I don't quite trust him. I've been seeing him since last September trying to give him a chance. I hope you will consider finding someone else. Good Luck!

[cam_kris]

Thank you very much everyone for all the great responses!!  I am so very thankful for this board and your comments and past history of your own dx.  I have learned more on this site then my onc and yes, i am going to go find another onc, i feel stupid that I am not understanding him and i truly want to understand my dx on every visit.  I want to know the progress that i am making either way!  i need to know this, it is very important to me.  having CML is just been a very crazy rollercoaster.  Its crazy to be this sick and feel so good.   sure hope it stays this way!  Thank you all so very much again for all the great posts. It has been so comforting to understand  this crazy disease throu others eyes.  Thank you!!