4 replies to this topic

[SBDFjersey]

Good Morning Everyone,

Quick recap my husband (44) was diagnosed July 18th 2013, WBC 298,000.  On Tasigna twice a day 300mg in morning 300 night. Ok so I am freaking out but trying to be positive for him.  He had a BMB in January everything seemed good but his WBC numbers recently have been going up. Here are the last three PCRU test results .6 to 369 to 741 ( he just did this test last Thursday) .  So I just don't understand these PCR and Fish tests and the numbers I am trying not to ask him a lot of questions because I can tell he is nervous they said they may want to do another BMB to see what is going on and then adjust medicine.  Should we be doing something else, he has recently had problems with his Thyroid they put him on medicine for that.  He still has swelling in his eyes from last August when he had hemorrhaging, I feel terrible as a care take our twins have been seek and I was focusing on them so now I am completely freaking out that things are going in the wrong direction    I know many of you have a ton of knowledge so please try to help me understand this better than the doctors sometimes they make it confusing and I feel stupid asking all these questions and still feeling like I don't have an answer. 

Thanks for just listening to me rant

Danielle

[August1]

Hi Danielle,

I certainly understand the concern and sorry you are going through this! I am 43 and have 4 kids, so I totally get how nerve-wracking this can be. The most important thing to understand at this point is that there are five very good TKI drugs for CML. Each of them works in different ways. CML can be tricky as it can vary slightly from person to person or it can change over time. So some drugs will work better for different people at different times. So even if Tasigna is not the drug for your husband, most likely one of the other available drugs, such as Sprycel, will provide more durable response.

Regarding the PCR tests, can you clarify if those are the actual numbers based on the International Scale? PCR is usually a percentage so I'm wondering if the last two readings should have a decimal point in them? So are the "actual" numbers 0.6, 3.69 and 7.41? Or are they .6, 0.369, and 0.741? This might change things a little so it would be good to know.

If your husband was at 0.6% before one year of treatment than he was right around Complete Cytogenetic Response (CCyR) which is a good response overall. A jump from 0.6 to 0.741 would probably just be watched as small bumps like this are pretty common in CML treatment.

If he has lost his CCyR and is at 7.41% the doctors may do another BMB and run a mutation analysis. Based on this they would probably recommend a different TKI drug, such as Sprycel, and based on the results of their tests.

I hope this helps. Hang in there! I am sure they'll get this worked out.

Bill

[SBDFjersey]

Hi Bill,

Thank you for answering my questions so it looks like the numbers were .629 and last weeks number was a .787 so I guess my question is does this mean the Philadelphia Chromosome is increasing instead of decreasing??  We are waiting for the Oncologist to call us back.  I will have him ask about the Complete Cytogenetic Response (CCyR) .  I guess we have been moving in such a good direction I was getting comfortable with the fact that everything was going good and then out of the blue numbers were up and they were talking about another BMB, I guess I just got myself worked up sorry I just still don't understand the number game.  Can you tell me what numbers we need to be tracking every time he has blood work I am going to do an excel spreadsheet and if you can tell me I would greatly appreciate it but I need the actual names of the tests all the abbreviations are confusing.  If you have time I know everyone is busy.

Thank you again for your reply

Danielle

[Trey]

Bill asked the right questions, and your clarification that the PCR tests are .6%, .629%, and .787% was important.  The three PCR results are statistically flat, so there is no loss of response shown by these numbers.  Many patients encounter a "Tasigna plateau" (my terminology based on our experiences here) at about the timing your husband is in, so this is fairly normal.  If his PCR numbers are International Standard then he is in CCyR and so is doing just fine.  Most patients who experience this Tasigna plateau will experience subsequent significant drops in PCR after another 6 - 12 months, varying by individual.  So this is the likely scenario for him, which will be a continuation of the decline in PCRs later in 2014.

So overall there is nothing worrisome in his PCR numbers.  You also said his WBC is rising, but how much?  These things can happen, but WBC is not a very reliable measure of CML drug response.  So unless the WBC has risen above normal range (maybe above 11) there is no concern there, either.  But if above 11 tell us what is is, and the individual numbers which make up the WBC (NEU, LYM, EOS, MON).  Remember the WBC responds to environmental stimuli, such as allergens, viruses, etc.

[SBDFjersey]

Thanks Trey,

His WBC was 13000 I will have to get the make up for you. What does BCRABL mean ?  

Thank you and Bill for your help

Danielle