32 replies to this topic

[Trey]

That sounds better than most "indeterminate" results.  I would not use the term "indeterminate" for that result, and I would say it indicates very low BCR-ABL levels.  Another reason why getting a copy of test results is important.  Sometimes it even turns bad news to good news.

The lab changing from G6PDH to ABL as the control gene is in keeping with most labs.  When the BCR-ABL levels are very low, the comparison of PCR results becomes an irrelevant issue.

[GerryL]

Hi Teds,

When I look at the test results it shows them as being completed on the same day as the BMB. Perhaps my Hematologist has joined with CML and they are both trying to teach me to have patience and perseverance LOL.

My doc is pretty good and possibly has patients with every type of leukemia, so someone with CML who is proving responsive to Glivec with a low number of side effects, may sit lower in his list of concerns. Feels a bit stressful on occasion, but when I compare it to what is happening with you and some of the others, it is nothing.

At least I have a bit of a plan now, rather than sitting around waiting all those months for him to come back from holidays. I may have also managed to get a copy of my original tests sent to my GP, will check that out next week. Should have asked for that in the beginning, but then again my first Hematologist didn't share the results with the GP and I'm sure if I had been married would have sent me out of the room so he could give my diagnosis to my husband. Which might have been all right as long as my husband got to experience the BMBs and side effects of the Glivec.

[Susan61]

Congratulations on your results.  This is what we like to hear.

[Susan61]

Hi Caroline:  I think your doing good.  I remember you were so sick a few weeks ago, and hope all that finally resolved for you.  It always seems like when it rains it pours, but you will be fine.

Susan 61

[eithne01]

thanks everyone,I checked with my "normal doctor"regarding my PCRU results.

he's going to sort it with my onc so I get my results the day after he does. You were right my appts are every three months

but from now on I wont have to wait until my appts for results.

[eithne01]

The onc told me I had a 3 log reduction.He also said That going by my overall progress since diagnosis,

a full life span is expected.Going by the conversation even if I get PCRU he is reluctant for me to come off Glivec

as I am "managing"side effects.

[jrsboo]

Dear Eithne,

What wonderful news for you!!!!  You should go and celebrate!!!

Caroline

[jrsboo]

Thanks Susan!  Yes, has been pouring a bit here, but is the Pacific Northwest (tee hee).   I keep plugging each hole in the dyke of healthiness and shall march along, slower than usual, but still marching!!

Caroline

[jrsboo]

Trey:  Thank so much!  those are encouraging words. 

Caroline

[hannibellemo]

GerryL,

I can see why you were confused - I certainly am. If he told you you were CCyR that's what you were since that is the step before MMR. However, since he didn't seem to know that, he told you he might have those results (for MMR) later, then I would take everything he told me in the future as suspect.

Any chance you can find another onc?

Pat

[GerryL]

Hi Pat,

It is possibly a bit more difficult finding a doctor here who only looks after CML patients, as I can remember reading somewhere that about 250 people are diagnosed each year in Australia. But I guess as the TKIs keep us alive and our numbers grow, then eventually we may get specific Hematologists here.

I've already changed docs once so far - the original doc was good, but he'd been around a while and came from the land of not telling your patient too much.

My current doctor travels to the States each year to keep up with all the information, but as I mentioned he does cover off the different leukemias. Thankfully I found this discussion board and been able to gain a better understanding of CML, though I will probably still be asking Trey and the others to give me a breakdown of my initial results, (hopefully my GP now has a copy of it). When I swapped my Hematologists, I actually got copies of results of the blood work and the BMB he did. I'll stay with this guy for a while to see how things go, having a PCR done before I see him will give me something to talk to him about. I haven't mentioned to him that I'm hoping to attain PCRU and after a year or two drop my dosage back to 300mg - be interesting how he reacts to that.

Gerry

[Tedsey]

Do you mind me asking what your WBC was at dx?  I was dx just a month after you.

Tedsey

[eithne01]

tedsey,I'm not exactly sure but I'll find out after the easrer holiday.I do know they were absoloutley crazy

for a long time before someone decided it was time for a BMB/A.I just feel fortunate that I was still in Chronic phase.