3 replies to this topic

[Tedsey]

I have been on Gleevec for about 2.5 months (taken off for 9 days because of low blood counts).  Last Thurs, they pulled blood to do the 1st PCR since on Gleevec.  Upon dx last Nov., results came back with reliable qualitative results supporting the BCR-ABL1 oncogene, but the quantitative were not reliable (got completely different numbers on the expression of ABL1, but BCR was evident).  I am anxiously awaiting a call from my onc.  She was supposed to call today, but has not (not surprised).  Hope it is not bad news.  However, wouldn't it be kind of back to square one (as for how much BCR-ABL1 is present in my blood) without a reliable number to begin with?  I had a BMB in Nov. and it showed evidence of Ph+ (molecular, right?).  So with this PCR, are they just going to get a "baseline"?  And would it be difficult to assess if Gleevec is working or not?  I hope someone understands this question.  Perhaps I am not understanding correctly (likely).  Besides the questions Trey gave me to ask the onc about when I was first diagnosed, is there anything I should ask specifically this time (with this 2nd cytogenic test) ?  I do not get many answers from the onc.  She is vague and often does not answer my questions.  I am so distressed because the other hem/onc I wanted to switch to has accepted a position at Cornell's Sloan Kettering.  Now I am stuck with this woman unless I leave this cancer center all together.  Loved some other hem/oncs there, but no one else specializes in CML (the one I see does research in AML, CML and myeloproliferative disorders).  However, I cannot imagine a life-long "relationship" with this woman.  I am not a total idiot and I hate to left out in the dark.  I know my numbers are remaining very low on Gleevec and I have yet to stabilize.   I guess it is just wait and see.  But I know how important it is to get after this monster early on.

[Trey]

When the PCR result comes back, ask what the log reduction is.  That will give you a good idea where you stand.  I would not read anything into not hearing from the Onc.  They never have enough time to do all they need to do.  Also ask the other questions I provided earlier.

[PhilB]

Hi Tedsey,

The fact that your quantitative PCR at dx didn't give usable results means that you don't have a personal baseline number to work from, but the lab that is doing the testing will have its own standard baseline which is an average for newly dx patients - if the lab is on international scale this baseline will be 100%.  You can quite happily use this number as the baseline against which to measure your progress.

There seems to be an unwritten rule that PCR results ALWAYS take much longer than they should.  In my case I work on 2 weeks for them to do the test and write it up, a further week for them to send it to the wrong doctor at the wrong hospital then a week of me chasing it for it to be found, faxed to the right place, my doctor's secretary to tie her to her chair and make her read it then for someone to phone me.  I have to say I'm surprised to learn that things are equally bad in the US - I would have thought that would be somewhat unwise with your very lax gun laws.

Phil

[Tedsey]

Thanks you guys !  Phil, you always make me laugh. Trey, you always calm my soul.  Anyway, still waiting to find out the results.  Go back to doc next week, so the results should be in by then.  Speaking of lax gun laws in the U.S., I am curious why shootings happen in places like schools and post offices and not more often in cancer centers.  Lucky for my doc I don't own a gun or ever want to.  The closest I think I ever came to aggression (regarding the quagmire it is in finding out blood results) is wanting to stand up in the waiting room and scream.  My blood pressure only rises when I have to go to or talk to the hematologist.  Otherwise, it is low normal.