44 replies to this topic

[Frogiegirl]

Well got my results today. ....wmt from .00072 to .00083.....I'm a wreck:( any input?

[klf2013]

I think Trey would tell you to relax. Labs have a margin of error.  But I do understand your concern. Mine went up too this last go around and my onc wants to do another BMB! Not looking forward to it!  I went from .08 in Aug 2014 to .108 in December 2014 and my last one in March was .300.  That means my onc no longer considers me at MMR.  Crap!  I am focusing on the Mayo clinic's statement that if your # is between .05-.5 you are still considered at MMR....Did I read that right Trey?   Trey?  Bueller... Bueller!

[Frogiegirl]

Could it be another platue? Started tasigna Nov 4 2013? Reduced dose as well? 450mg

[Jerry.s]

Did they out you on a Ppi resently ? I freaked out becuase I was put on them as well recently

[Frogiegirl]

They tried to put me on prilosec but I refused to take them.if I was who u were asking. I did start drinking kieffer? I'm soooo upset right now. Scared of my own actions right now. ...

[Lucas]

Hey frogiegirl, that's the same resultado. On this los level of CML such variations mean nothing. Don't worry.

[lplaskin]

Hi frogiegirl,  I know these things are a source of anxiety.  How do you feel?  Any noticeable problems with this 'new' level?  What does your doctor?  Although you are only up .00011, perhaps there is another explanation (organic vs inorganic).  When is your next test?  Focus on other things, especially if you are feeling okay.  I really don't think this is cause for you to worry.  I have other CML/Sprycel concerns that outweigh my BCR results, at least for right now (actually for the last 6-8 months).  Hang in there! 

keep us up-to-date, please.

[Trey]

Most patients would love to have your problem.  Which is no problem.  Except thinking it is a problem is a problem. 

[scuba]

Most patients would love to have your problem.  Which is no problem.  Except thinking it is a problem is a problem. 

 

God it annoys me when I have to agree with Mr. Trey ...

[Frogiegirl]

I guess I'm so use to constantly declining this is hitting me hard! Scoobs and sir Trey you make me feel like the spoiled child of cml??? Is this really no cause for concern? I was hoping for zeros so I could start a countdown to having my last child.....now I just feel greedy even thinking I could have one more:(

[scuba]

Well got my results today. ....wmt from .00072 to .00083.....I'm a wreck:( any input?

 

See my comment to Mr. Trey.

 

And.

 

Think of it this way.  Here is your result last time:

 

0.00 ...

Here is your result this time:

 

0.00 ...

 

I think that is fantastic.

 

Now.....

 

Here is your result from last time to the next decimal place which is MEANINGLESS.

 

0.001

 

And here is your last result this time to the next decimal place:

 

0.001

 

Get the picture?

 

You are for all practical purposes "undetected" PCRU. The lab equipment has so much error when at this level. They should not even report the numbers beyond the second decimal place. You will never die from CML - EVER. You will die from something else.

 

Your goal now should be to get off the drug. That's the goal. Get your nutrition up (as you're doing) - focus on general health. And some day, CML will fade away. Personally - if you stopped taking your TKI right now  - you probably would still have a PCR value in this area at next test (it's a secret the pharma people don't want out - but that's just my opinion).

 

You're doing great. Go love your husband. You're going to be around for awhile.

 

Scubes (don't start on me Trey)

[scuba]

I guess I'm so use to constantly declining this is hitting me hard! Scoobs and sir Trey you make me feel like the spoiled child of cml??? Is this really no cause for concern? I was hoping for zeros so I could start a countdown to having my last child.....now I just feel greedy even thinking I could have one more:(

 

YOU WANT another child? That's a 20 year sentence. Don't do it.

(o.k. - do it, but don't name him Trey (if a boy) or Treyanne (if a girl).

Name him Michael!

[Frogiegirl]

Scoobs:) thank you for taking the time to explain that way of thinking to me....I seriously needed that! I'm soooo scared and such a control freak I'm having a hard time wrapping my head around these results. I do everything they say. It pissed me off when people say "oh you have the good kind of cancer" ......no this roller coaster sux. its emotionally and physically long term exhausting....

[scuba]

Scoobs:) thank you for taking the time to explain that way of thinking to me....I seriously needed that! I'm soooo scared and such a control freak I'm having a hard time wrapping my head around these results. I do everything they say. It pissed me off when people say "oh you have the good kind of cancer" ......no this roller coaster sux. its emotionally and physically long term exhausting....

 

You don't have cancer. If you had cancer you would have no hair and be stuck in a chair with a tube running in your arm. Your beautiful picture shows you have hair. So you don't have cancer.

 

What you have is a chronic condition more akin to diabetes. It's manageable if you take the drug. Look at me - I don't even take the drug anymore, but I still consider myself as having a "chronic condition". That's what you and I have. It's not cancer. Cancer kills you.

CML will not kill you.

 

So ... what's for dinner?

[Trey]

I don't know why, but this somehow reminds me of a post on this forum from several years ago, before the website re-do wiped out the old posts.  The title was "Need Help -- I Want to Have A Baby".  Somehow, PhilB and I were able to restrain ourselves and not respond.  It was so difficult to restrain ourselves.  So very, very difficult.........

[Billie Murawski]

Trey I think I remember that post too, we were all very proud of you guys!Could it have been someone who corresponds with Pin a lot.   I almost blurted out are you crazy? I raised 2 beautiful babies and I'm very proud of them but all that comes to my mind is their first words are no,the first day of kindergarten they come home smarter then we are. puberty , breaking curfew, working my arse off to send my daughter to penn state where she majored in sorority and parties. I am proud to say that my daughter went back to school and paid her own tuition and she now has a degree in economics and a very good job. My son was a very hardworker too until his accident if they could just stay babies a while longer. Oh to be young again (we get too soon dumb and to late smart)!!!

[Billie Murawski]

Scoobs:) thank you for taking the time to explain that way of thinking to me....I seriously needed that! I'm soooo scared and such a control freak I'm having a hard time wrapping my head around these results. I do everything they say. It pissed me off when people say "oh you have the good kind of cancer" ......no this roller coaster sux. its emotionally and physically long term exhausting....

Frogiegirl, Listen to the group, I don't understand all these numbers but these guys know what their talking about. I'm the type of person where ignorance is bliss! Oh crap I probably just set myself up for something.

[hannibellemo]

I caught it, Billie! Everyone, say it with me, "Billie, you must be the happiest woman in the world!"  

[Frogiegirl]

In my haste I reported my numbers wrong   There are only two zeros after the decimal point.....so Decembers result was .0072 and march result was .0083  Does that make a difference? this international scale is confusing....well at least for me! Does that mean I am Just MMR? ....which I am not complaining about just curious. the doctor still has not called me to review results, or if he will change my treatment plan. I am thinking this might warrant another BMB or an increase in Tasigna? Currently at 450mg daily. Any input now that I got the number of zeros after the decimal corrected tehehehehehe.....

[scuba]

In my haste I reported my numbers wrong   There are only two zeros after the decimal point.....so Decembers result was .0072 and march result was .0083  Does that make a difference? this international scale is confusing....well at least for me! Does that mean I am Just MMR? ....which I am not complaining about just curious. the doctor still has not called me to review results, or if he will change my treatment plan. I am thinking this might warrant another BMB or an increase in Tasigna? Currently at 450mg daily. Any input now that I got the number of zeros after the decimal corrected tehehehehehe.....

 

Jessica - The error range of PCR testing can be as high as one log or one order of magnitude. Using the same blood sample, you could have had values ranging much higher or lower than the difference between your test.

 

YOU ARE FINE. This is noise in the testing. PCR is a molecular test and use it because they can't see any CML cells anymore. Under a microscope, all of your blood cells would look normal. They would not be able to see a single CML Cell. So they go to a much finer detail to see a hint of CML still lurking - that is what PCR reveals.

 

MMR = or less than  0.1% You are an order of magnitude below that. 
No need to increase your dose. Your Dr. will not change your plan unless you want to change drugs for side effect reasons. Personally - you could LOWER your dose and likely still be fine. You could change to Sprycel and likely push these numbers to below detection more easily - but then you would have to experience new side effects (or none at all - everyone is different).

 

Let's see what your next test shows - in the mean time get your D level up and take K2.

 

Michael