11 replies to this topic

[JoshLee]

Hi Everyone,

       So how important is it to achieve CCyR by 6 months? At my 3 month check-up I was at 22% and at my 6 month BMB I was at 2/20, which I am assuming means 10%. In the reseacrch I've done, it seems like a lot of the specialists are beginning to push for CCyR at 6 months. I am just a little weirded out that I experienced such a dramatic drop at 3 months and then only a small one at 6. I mean, I know I've got some time for my body to knock that 10% down, but I obviously just wish it would happen quicker and hope that it's not an indicator that stuff is starting to slow off. Just in need of a little encouragement. Thanks everyone!

[CallMeLucky]

A couple of things to consider are the fact that you are at very low level for FISH test and there is a margin of error on the test, so you could be CCyR and not officially confirmed by the result of this test.  Either way you have clearly gone way down and the drug is working.  It is hard early on as things seem to fluctuate a bit and we get anxious wanting to reach the milestones.  I think 6 mo CCyR is a nice to have, but it is not deterministic of long term progress.  I've read of people plugging along after 10 years and not achieving a true stable CCyR.  I would expect by next test you are zero on the FISH.  I think in this case it would also help to look at the results of the PCR.  Usually early on the FISH is more telling, but the two together often paint the picture.  If your PCR is also going down, then that would be further assurance you are moving in the right direction.  One last thing, you did not mention if these results were from peripheral blood or bone marrow.  I'm guessing your six mo was a BMA (but maybe not, some doctors are going off PB only).  If the last test was PB and this one was BMA, then that could also play into the results.  Overall it appears you are doing well, you have had a major cytogenetic response even if you have not had a complete one.  According to NCCN guidelines, you are where you are supposed to be and based on your test results there would be no need to change your current treatment.  So try to hang in there, it is nerve racking, but overall you appear to be doing real well.

[Trey]

CCyR by 12 months is still the initial goal.  The rate of drop in FISH and PCR will generally decrease as the cells being killed off become the higher level ones (which are more difficult to eliminate), while at first the lower level leukemic WBCs are killed off (easier to eliminate).

[JoshLee]

Thanks to the both of you for helping me out. The latests results are the cytogenetics (2/20) from my 6 month bone marrow biopsy. My new oncologist doesn't do FISH and only wants to do bone marrow biopsies until I reach CCyR. That's weird, right? My PCR is going down. My onc. said I've had a 1.1 log reduction so far...I am a little confused on this. My latest PCR was done off of PB and my last FISH, with my old onc. that read 22% was also done off of PB. My cytogenetics (the 2/20 where I am getting the 10% from) was obviously done from my BMB. My PCR is down from my 3 month checkup, which is good.

[CallMeLucky]

It really does sound like everything is going the way it is supposed to.  You've made good progress and there is no reason to think you won't continue to do well.  I know it sucks to not get that zero, but hang in there.

[Tedsey]

Hi Josh,

No worries right now.  I didn't achieve CCyR until 1 year.  And I think I got to CCyR "on time" because I was switched to Sprycel.  My oncologists at two different centers never did FISH.  I have never had one.  At first, they looked at my bone marrow and peripheral.  However, since you cannot compare the two, my onc only does it on my peripheral blood.  I think this is normal practice and it appears you can get the same info from a PCR done on just PB.  I had a BMB yesterday (and it was a comedy of errors--they actually, for the first time, offered me a "margarita" to go with my local (conscious sedation).  I should have taken it.  They couldn't get a core sample and had to dig around, and then the onc hit a button on the hospital bed that made my torso go up into the needle--tons o' fun, but she couldn't do anything about it or else she would break sterility---we CMLer's sure can take a beating cant' we?  Anyway, woke up with bloody bandage and it seeped into my nice panties I wore to bed---totally ruined.  Luckily I wore a cool pack to bed that caught the rest of the blood.  No stains on the sheets, phew!)  Sorry, TMI.  Too graphic.  Just had to get it out there with people who could commiserate.  And these things only happen to me, so don't ever worry about it ever happening to you.

Anyway, my onc still does a BMB twice a year after CCyR.  I am not sure if this is playing it way safe or what.  It appears there is no real protocol and every onc is on he/her own in this regard (or course, there will be those with very educated opinions what the protocol should be).  I think if I were to reach MMR, she would only do it once a year or not at all.  Then, it is just as good to monitor via PB PCR.

Best of luck.  Please keep on posting how you are doing.  Hope I didn't scare you with my silly, scary story.  I am still hangin' in at 21 mos. post dx.  I plan to be around much, much, much, longer than that.

All the best,

Tedsey

[Marnie]

Oh, good god. . .that sounds awful!!  You need to at least make sure your onc buys you a new pair of panties. . .and really nice ones at that. . .Victoria's Secret, maybe??

Sorry to hear you had such a rough time.  Sheesh!!

Marnie

[GerryL]

Hi Teds,

The one good thing about the story is you've got strong bones which will be great when you get to old age. I agree with Marnie, tell the doc you're going to deduct funds for a new pair of panties from VS, from her bill.

Hoping you get to MMR this time round so you can skip the BMBs.

Gerry

[Happycat]

Okay, Teds, next time - unplug the bed before they start so they can't hit any buttons and make it move!    All I can say is - ouch, ouch, ouch, ouch, ouch!

Oh, yeah, take the conscious sedation, too.  I always go for that whenever it is offered.  And I've demanded it a few times for my dd when she's had some painful tests.  (They kept insisting they could hypnotize her and she wouldn't feel a thing.  Bulldinkies!  It still hurt even with conscious sedation AND hypnosis.   At least with the sedation, she forgot all about it and didn't tag me as the mean mommie who let those mean people hurt her!)

Take care,

Traci

[Happycat]

Josh, my onc told me he's happy to see people reach CCyR in 12-18 months.  He says there's some controversy about it, getting there in 12 months time vs. 18, but even people who get there a little later (18 mo) do really quite well.

Traci

[CallMeLucky]

Teds - if your doctor sends you a pretty pair of panties, you need to find a new doctor and report the freak to the authorities....

Just sayin.....