20 replies to this topic

[pammartin]

I have a few results they are gibberish to me, but hoping others can make sense of them.  I will begin by telling you Pittsburgh said they could not figure out my blast cell count, even after I pushed for answer.  I said how could I be put in a stage without knowing this result.  That was about when I lost service, she was telling me my test results were very odd and did not follow the normal CML count.

PCR Transcript

B3A2 - 810248

B2A2 - 0668

E1A2 - Negative

Fish - 93%

Blast cells - no defined number (exact words)

Thanks everyone for your help and continued support.  I am hoping I can become supportive to others as I journey down the road many of you have been traveling for years.

Pam

[CallMeLucky]

I don't understand what those values mean, maybe Trey will know how to decipher that.  For the PCR numbers you would expect to see either a percentage or a ratio.  It's nice that E1A2 is not detected.

I still don't understand what qualifies you for Accelerated phase other than you have high platelets.

Hopefully some others like Trey will weigh in and shed some light on what you have posted.

[pammartin]

Thanks, I must admit I am at a total loss.  I am planning on having a copy of all results when I leave dr office on Thursday.  Perhaps that will shed more light on my sitaution.

[Susan61]

Hi Pam:  I never heard of those values either.  Give us a update on Thursday.

Susan

[jjg]

Hi Pam,

Here is some info Trey posted about the chromosome types (the search function on this site is quite good):

http://community.lls...age/55119#55119

I expect that the lab has reported raw numbers without bothering to normalize them. So what you posted here seems normal, well CML normal, guess you'll know more Thursday.

Cheers

J

[pammartin]

Thanks, I read over Trey's post explaining the tests and overview of CML (2 times), that helped, and this post you referred to turned on another light bulb.  I wonder if they are not percentages, but they did not give me the decimal point.  I am determined to have numbers to post on Thursday!

[Trey]

Those PCR numbers are not understandable unless put into ratios or percentages.  If your Onc does not know your diagnostic blast count, then he probably does not know what phase you are in.

[pammartin]

Thank you, perhaps Thursday I can shed some light on the number issue.  If there is not a blast number, is this common, or is it unique to CML?

[Trey]

You should just ask the Onc what specifically caused the Accelerated Phase diagnosis.  If the Onc cannot cite blast count, basophil count, or other high risk factors (such as additional chromosome mutations) then he simply does not know what he is talking about.

[LivingWellWithCML]

My understanding is that blast percentage is the indicator of phase.  That number was almost front and center in the BMB I had at diagnosis in order to confirm the phase definitively...

[pammartin]

According to the report, my blast cells are less than 1%.   My white count has went from 26 down to 16 and platelets are still at 1.5 million.  This is on two days of Sprycel. I was told I am headed in the right direction, and then told to return in two weeks.  Bloodwork continues to be drawn weekly.  Thanks

Pam

[CallMeLucky]

Good news for your health, raises some more questions about the "Accelerated Phase" diagnosis.

I would be happy about this....

[Trey]

Unless the Onc can come up with an explanation for telling you that the diagnosis was Accelerated Phase, the Onc has done you a great disservice by causing unecessary additional concern at an already difficult time.  I doubt that he can.

[pammartin]

I am inclinded to agree.  Thank you, without all of your information I would have blindly went along with everything I was told because I knew nothing of my new diagnosis.

Pam

[PhilB]

Hi Pam

For someone in accelerated phase it is really important to be treated by a doctor who really knows about CML.  The bad news is that it looks very likely that your onc doesn't know anywhere near enough to be left in charge of someone in accelerated phase.  The good news is that it also looks very likely that you aren't actually IN accelerated phase - or anywhere near it.  Either you have a very atypical case of accelerated phase and a highly skilled doctor who has been able to spot it, or you aren't in accelerated phase and your doctor's a jerk, but he's prescribed the right treatment anyway.  Either way you win!

Phil

[pammartin]

That is a pretty great way of looking at the results. Thanks.  It is difficult dealing with the two doctors, I am not to see the one in Pittsburgh until late December, overseeing oncologist every two weeks.  I am looking forward to next weeks blood counts.  The more I learn the more I am positive my search for a new doctor is the best route.  It was Pittsburgh specialist who had accelerated stage diagnosis. 

I do have a question though, the platelets do not seem to be moving, (at least they are not going up) a few weeks ago they were at 1, 700,000 then down to 1,400,000, and now current number, should they begin the return to normal levels by next week, in theory of course.  And if they do not has anyone had any experience with this?  I did read another supporter on here had a similar experience, but I have not read much about platelets.

Thanks again!

Pam

[Trey]

Platelets are often the last blood item to normalize.  Having said that, yours are still very high.  At a minimum I would still take the daily aspirin for blood thinning.

[Beanie]

It may have been me you are talking about because I did tell you that my platelets were over 1.1 million.  They went down to 265 in a month and a half on Gleevec 400 ml.

[pammartin]

Thanks, I believe it was you I was referring too.  I am on the aspirin, but that is all.  These doctors are concerned about the platelet levels, but  ER doctors go bananas when they see those levels.  I am hoping for the same success for the platelets on Sprycel as you have had on the Gleevec. 

[hannibellemo]

Pam,

My platelets were 1.25 million at dx and they were within normal limits in 3 weeks. Yours will come down, too. We all have our own timelines and just have to wait it out.

Pat