15 replies to this topic

[Skittles]

I am a little uneasy about having my PCR's  at 4 month intervals rather than at 3 months even though I have been in MMR for a year and a half  and as far as I know (currently waiting for this PCR result)  PCR Undetectable for a year now.  It seems too early to start moving the testing further apart.   I remember reading where Trey wrote that 6 months intervals were ok but I thought that was for someone a little further along in MMR  than this.

Perhaps I am just too nervous about the change in the routine and overreacting but I'd appreciate any input on this.  Thanks,  Skittles

[PhilB]

Seems eminently reasonable to me.  I've just moved to 6 monthly and I've been in MMR for the same lenght of time as you, but I'm just holding steady at around 3.5 log whereas you've moved all the way to PCRU.  I'd say 4 months was on the conservative side in your case.

Should we be nervous?  No, not really.

Will we be nervous?  You're darn tootin' (as I believe you colonials say)

[hannibellemo]

Hi, Skittles,

My doc moved me to 6 mos. after my first MMR! That freaked me out so I have one done in between with my local onc. It's done at the same lab so no difference, I'm just careful to have the lab done M-W.

After a year I think I'll be more comfortable with the every 6 months.

Pat

[Trey]

The NCCN Guidelines for Treatment of CML says PCRs should be done every 3 months initially until after CCyR, and then 3 - 6 month intervals after that.  So after MMR stretching out the PCR intervals is certainly acceptable.  But it is also an issue of how you view it as a patient.  If more PCRs help you deal with CML better mentally, then do them more frequently than every 6 months.

But if you ask for more frequent monitoring and still freak out and cry "I'm doomed!!!!"every time the PCR results are coming due (like one of the posters above, who will remain unnamed, but it was not you or Phil), then that is a wee tad odd.

[everonward]

Like Phil -   I'm UK based and know that we are moving to 6 monthly PCR for those of us at MMR I am currently ay 0.01% on the international scale. I'm seeing my doc ontiesday not sure id I am being drawn for PCR or noe as last one was Nov. Alao wondering if the Southampton UK trial will come up in conversation as I do qualify and am only about 2 hrs awau

[Skittles]

You guys are great!!   Trey thanks for reminding us of the guidelines for the NCCA.  I am quite sure we all have our pile of Trey print outs but you have  saved me the time with your response and I appreciate it.  Phil you made me laugh....I sure am 'darn tootin' nervous and, like Pat,  I will not be comfortable until some time has gone by.  I imagine if I am started on 6 month testing I might just have to beg for 4 months instead just so  I don't go bonkers thinking 'I am doomed'.   I find it interesting that the UK is moving to the 6 month testing and feel sure my onc. will do the same if things go well.  I do not know anything about the trial coming to Southampton but wish you best with that conversation Everonward. 

Thanks everyone, Skittles

[hannibellemo]

Good point, Trey! I didn't realize that was the guideline, I thought Dr. L was just cutting me loose for longer periods of time because Mayo is, well, Mayo, and they tend to do things a bit differently. Thanks for pointing that out.

In my defense, I would like to say that I am only a blithering idiot before the PCR, not after. Waiting for the results doesn't bother me at all. Go figure.

Pat

[cometbro]

I'm still kind of new to this, but the first thought in my head is, what happens if I develop a resistance between those 3-6 months?  Are they saying that even if I develop a resistance within those 3-6 months, that time frame is still short enough that the leukemia won't progress to a dangerous level if coming off MMR?

[Trey]

It is a combination of progression time and decreased probability of progression.  If a person reaches MMR, they have a greatly reduced risk of progression.  Plus the progression time would be long enough that the risks are rather low.  But the risks are not zero, just significantly reduced.

[PhilB]

That's the idea.  CML is a slow moving disease so even if you did develop a resistance (which is very unlikely) then an extra 3 months shouldn't make any real difference and there should be plenty of time to take remedial action.

[cometbro]

I see.  I remember when I got my original blood test at my primary doctor it was 163,000 WBC.  By the time I got a referral to the next hema/oncologist and got a blood test 13 days later it was at 205,000 so at that time I thought it was very fast moving (I was even mentally preparing to ***, don't even want to say that 3 letter word).  My PCP and first hema/oncologist (who was old-school and seemed to just recently find about about Gleevec) were not too up-to-date on this and my fear only grew.  It was only while reading online that I saw that there were new medicines and better hematologists/oncologists.

My thought process was that if in 2 weeks the WBC ran up so high that this is the normal progression even with medicine like Tasigna and Gleevec, and that these medications are only to destroy all of these leukemic cells that progressed at a rate similar to how fast my WBC was growing.  I believe I am missing something.  When we talk about MMR and 3 log reduction, this is completely separate from WBC?  Meaning, if I take Tasigna and my WBC comes down to normal levels from whatever it was, does Tasigna then start working on reducing that 3log percentage?  Or does it work all together?

In other words, If I have a 3 log reduction, at what point in time will my WBC start growing again?  Will it be after my 3 log reduction (ex. .001) comes back up to (ex. 1.000) ?  As you can tell, i'm not piecing it together yet.

[CallMeLucky]

CML takes a long time to progress. Prognosis is 3-5 years if untreated.  By the time your blood counts are elevated, you have already had CML for a while.  The high blood counts are the first sign based on the type of testing they do on "healthy" individuals (i.e. CBC).  No one appears to be running PCR's looking for BCR-ABL in healthy individuals (hope I don't get this thread hyjacked with that statement).  Anyway point being that if the drugs get you to a 3 log reduction, then you have seriously knocked down the CML.  Stop taking the drug or if you develop resistance, it should take it a while to get back up.  Even when people's numbers start going up it usually takes a few PCR's over a few months to determine if there is an actual upward trend.  So if you get down to MMR it appears that 6 mo interval for PCR's is reasonable.

[PhilB]

The other key piece of the jigsaw is the fact that the body is normally very well capable of regulating your blood counts by sending signals to stop production.  The CML cells ignore these signals, but the healthy cells obey them whcih keeps your WBC normal for a long while.  The blood counts only start going up once you have enough CML cells to exceed the body's needs all by themselves.

By the time you were diagnosed you would basically have been 100% CML cells, all producing flat out  -hence the rapid rise in counts.  Someone in MMR is down to around 1 in a thousand and generally it would take a good few months for them to build to the point where the bad guys' ability to produce exceeds the good guys' ability to offset it by stopping production.

[janekaye]

I fervently join you in hoping that your parenthetical remark doesn't result in another "hijack."  Personally, I've had enough of that for awhile.  I'm not a frequent poster, but an avid follower of the boards, and sometimes (only rarely) I understand why I don't post more often.  Oh well......can't be picky or thin-skinned.  We're dealing with serous stuff here, and I think we all know it!  The majority of us who post even at all are just trying to be supportive, caring, and sometimes humorous to make the journey a little easier.

-janekaye

[cometbro]

CallMeLucky and PhilB, thanks for clearing it up.  Its making more sense.  I guess when it'll be my turn to have PCR's every 3-6 months I shouldn't be too worried.  Right now, every month, every time I feel something strange, I think to myself, uh oh, its not working anymore.  I guess its something that you have to get used to at first.  Thanks.

[everonward]

Janekaye

you took the words right out of my mouth

However after believing I was heding toward 6 monthly pcrs - saw my dr on tueday and the phbologist form asked for the works - so pcr results in 2 -3 weeks time.

Marian