30 replies to this topic

[gerry]

Kat, not sure how your bloods are done in the US, but here in Aus I get the blood collection agency to send a copy through to my GP. I pick a copy of the report up from the GP.

[kat73]

Gerry - It isn't a US thing, it's a Johns Hopkins thing, unfortunately.  For some reason that has never been explained to my satisfaction, it is "impossible" for the computer system for the in-house lab that does the PCR to report electronically to MyChart, the patient portal where all the other lab reports go.  It can and does send it to the onc, evidently through a completely different channel.  He can pull it up on his screen and could print it out and snail mail it to me (which he, kind of understandably, says he has no time to do - he doesn't have an assistant).  And lastly, the kicker:  apparently it is also "impossible" for him to forward it to me as email.  So, I'm left to ask him to print out my reports each time I see him in the office (2 X year), which makes me feel like a weasel, as they are all known to me and past, and it takes valuable time away from my 15 minutes with him.  It's a small thing, I know, but also big.  And a phrase does come to mind:  "Jeez, we can send a man to the moon, why can't we (fill in the blank)?"  Just one more modern day frustration.

[gerry]

I wonder if it is a control thing with your doc as in his ego. He likes to be the one with all the info. My last doc easily adjusted to me knowing the results before I saw him. :-)
My new specialist actually added a cholesterol check to my blood test request and popped my GP's name on the report. Said it would save me extra blood tests. I usually just add the GP's name myself to the request.

[gerry]

Sandrea,
Have a read of this thread http://cmlc.ml...17045-immature-granulacites-in-cbc  cmljax's reply - though there does seem to be a difference in how you both report the norm percentage.

[Sandrea]

Gerry, it seems to me that thereat talk about myelocytes in the blood...
I have 24% of myelocytes in the bone marrow and the norm written in the blank - from 7% to 12%.
And, in 6 months myelocytes decreased to 8%, but in 10 months they grew to 24%

[gerry]

I'll have to leave it to Trey or one of the others to comment on the marrow.

It is great that you get your Gleevec for free, but odd that they don't provide free PCR testing more often, or at least until you reach a certain level.

[Sandrea]

odd that they don't provide free PCR testing more often, or at least until you reach a certain level.

 

In fact, I have bad luck living in the remote place. There is good monitoring in some cities, free every 3 months, but not everywhere... In Moscow and St. Petersburg everything is fine, but there is no anyone laboratory in Vladivostok, and the blood is sent to another city for PCR testing.

 

[Trey]

I would wait and see what the next PCR says.  Your levels of myelocytes (a mid-level myeloid blast cell) is on the edge of where it would be a concern.  They should be decreasing along with your PCR values.  Overall, if your PCR continues to do well in the future but you still have the high myeloblast levels, it would probably indicate a second type of marrow disease called Myelodysplastic Syndrome (MDS) along with the CML.  This is especially possible if you are severely anemic.  If you start to lose drug response (loss of CCyR) that would require switching drugs.  I would recommend switching now to Sprycel, but you have indicated that is not likely to happen. 

 

Are you anemic?  How severe?

[Sandrea]

Are you anemic?  How severe?

 

I had slight anemia all my life, but it wasn't serious, for 20 years before the diagnosis my hemoglobin was from 11 to 11.5, and now my "new normal" level is 10.5 on average. The MDS sounds scaring for me, I hope this increase of myelocytes was temporary and caused by some other reason...

[kat73]

I'm going to scoot back into this more important thread to answer Gerry, then I'll bug out. 

 

Gerry - No, my onc has no ego issues - the institution actually won't/can't release patient results until the doctor who ordered them signs off that he has read them.  And after that he's keen to share them with me right away, well before the next visit.  But in this one case (of PCR) it seems to be a computer-only issue.  Even when he releases them, they won't go to MyChart.  An in-house IT problem they evidently are not interested in fixing.

[gerry]

I'm going to scoot back into this more important thread to answer Gerry, then I'll bug out. 

 

Gerry - No, my onc has no ego issues - the institution actually won't/can't release patient results until the doctor who ordered them signs off that he has read them.  And after that he's keen to share them with me right away, well before the next visit.  But in this one case (of PCR) it seems to be a computer-only issue.  Even when he releases them, they won't go to MyChart.  An in-house IT problem they evidently are not interested in fixing.

 

Laws might be slightly different in the States, they seem to allow for other docs to receive the information here as long as they are doctors and their names are on the request forms.