33 replies to this topic

[Marnie]

Well, darn. 

Got my current PCR results and will see the doc tomorrow.  Numbers are up again.  Here are my numbers starting from June 2009.  Do the current numbers look like an upward trend worth worrying about or are the numbers low enough to be statistically insignificant.  Any suggestions for questions or discussion with the doctor tomorrow?

.200

.090

.054

.100

.127

.147

Switched to Sprycel

.002

.008

.002

.003

.060 (today)

Marnie

[Trey]

I would ask the Onc to do another PCR within about 2 months of the last one to confirm the result.  This recent result is a 1 log increase, however that is not considered significant unless it is also a loss of CCyR at the same time, which this is not.  My sense is that this is an insignificant blip given the long string of very good results.  But it is necessary to double check it to make sure that is the case.

[momruns]

Trey,

Since this post has to do with an upward trend, I have a question.  My WBC started at 70K in Feb 2010.  Within 3 months it was about 2.9 to 3.1 and stayed that way till this blood work where my WBC is 6.3.  I know 6.3 is within the normal range but looking at a trend my WBC doubled.  Also, after one year I am just at 1 log reduction.  My hct is still 29 and has not changed.  I am going to get the complete CBC w/ diff faxed to my work tomorrow to see how the neutrophil count is.  I don't like change unless I know it is for the good and I am not sure why all of a sudden my WBC doubled.  Am I nuts to be concerned.  Thanks for everything.

Loreta

[Marnie]

Thanks, Trey. . .that was sort of what I was thinking.  This also involves the issue of different labs for my last 3 PCRs, due to insurance woes.  It's possible that the current PCR was done at the same lab as 2 tests prior.  I'll check on that.  From now on, the labs will be the same, and this is the first PCR result that actually states that the lab is on IS, which is helpful. 

And now, back to masking and painting the kitchen.  Lovely way to spend the day when I'm already depressed about the PCR.  I do hate painting.

[Susan61]

Hi Marnie:  I guess you have to see what your Oncologist thinks.  Maybe you need the dose increased.  I am going this Wed. to find out what my PCR results are.  You had been on Gleevec.  What was the reason you had switched?

Is it possible to go back on the Gleevec?  I hope you get some good solution and explanation to all of this.

You are in a Cytogentic remission, and you could stay right there and be fine.  I do feel your numbers are holding in a low range on the PCR, which is a good thing.

     Let us know how you do. 

Susan

[Trey]

Loreta,

Nothing there to cause concern by itself.  Our blood counts change constantly, even from morning to evening, and during activity.  If those are good WBCs that are causing the increase, that would be a very nice result.  Either way it is likely temporary, and maybe allergies, or low level virus, or such.  But look at the total CBC for issues.  I generally do not view CBCs as a good indicator of CML status, but more of an indicator of blood "quality".

[Trey]

Changing labs yields unreliable PCR number trend lines. 

[Marnie]

Which is why the .003 did not concern me.  That was is from a completely different treatment/insurance system.  All the others are from Rocky Mountain Cancer Center.  What I need to find out (and I will tomorrow) is if the .060 is from the same labs as those other than the .003.  Both are from RMCC, but different facilities.  If so, then I'm a little concerned.  If not, then I'm starting from ground zero again. 

[Happycat]

Marnie,

You wrote earlier that this latest result said the lab is now on the IS.  If so, doesn't that mean a 10x correction factor typically?  What would your result be without IS?  Does it say?

Traci

[Marnie]

Hi, Traci. . .

I will have to investigate your question/comment.  My former onc (2 oncs ago, and the one I was with for most of my treatment) was not one to answer questions, and the PCR reports didn't have much data on them.  I don't know if they were the old scale, or international scale.  I'll see if my new onc can track this info down, since he's in the same system, just at a different location.  The old PCR reports don't even tell where the lab is!!  So once I find out more info about the old data, that will give me a better idea (maybe) of where I am with the new data.  The interim doc and cancer facility was an unfortunate timing issue. . .right when my PCRs started to rise, I had to switch insurance.  And right before I switched insurance, I had switched to the now new doc.  He did a BMB which showed CCyR, but did not do a PCR test then, which is a disappointment, because that would have been a good baseline for the current data.  That was back in August.  Then Sept to Dec 31 was different facility, so I can't compare that data to anything.  This is just frustrating.  It will be interesting to see what the new onc says.  I do think that he is much better than the old doc and the interim doc. . .but I guess only time will tell.   It was a bit difficult actually getting my PCR results before seeing him. . .his nurse was not keen on faxing me the info without getting the doc's o.k., and he's only in the location I go to once a week, so I've been playing phone tag with her, probably driving her crazy.  The other cancer centers were much more forthcoming about test data.  I hope this won't be an issue.  I hate pestering people, but it's MY data, and I like to have it BEFORE I see the doc.  Guess that will be another thing to talk about at tomorrow's appointment.

Anyway, thanks for your comment.  I will ask the doc.  He should certainly be able to find out where the old tests were done. .. he's in the same system as the old doc.  Might be a bit awkward, but that's his problem, I guess.

Marnie

[pammartin]

Marnie,

I have no advice, just wanted to say I am thinking positive thoughts and I wish you the best with your results.  Perhaps by now you are done painting and have time to enjoy a good glass of vino before falling into bed!

Pam

[Marnie]

Thanks, Pam. . .

The kitchen is painted.  The bad thing is that after you finish a room, you realize how bad the rest of the house looks.  So I'm afraid that next weekend will be the dining room, and the following weekend wil be. . .

Tomorrow is the visit to the onc bright and early, then on to a mammogram.  Then Wednesday is a day of touring all of the schools where I might be placed next year. . .meet and greet the principals.  Then a couple of weeks until the interviews.  Between job and PCR (and coming back from a walk to find that the husband had decided to start painting), I'm tired and stressed.  But.. .. what can you do. . .

At least it will be nice to talk to the onc and get his perspective on things.  It's just been such a wierd couple of months because of the insurance and doctor switches, that I don't feel like the new guy knows me at all, or has a handle on where I'm at.  Not his fault. . just the way things shook out.  anyway, I guess I'm over the initial shock of seeing my PCR number.  Not what I expected to see, even though I know that I can't really compare results right now. 

Enjoy the rest of your evening!

Marnie

[Tedsey]

OK, if anyone has a right to "pester" someone, isn't it you?  Think about it, and all you have been through.  Glad the kitchen is painted.  Hope you think it looks good!  Take care.  Also sending good vibes your way.

Teds

[pammartin]

Oh Marnie, I can sympathize.  When we bought this house we were only going to re-do the livingroom.  Then it was the family room, the front stairway, then our bedroom/dressing room, Nick's room, and back stairway, oh yeah, somewhere in there was the downstairs bathroom (I continue to ignore the upstairs bathroom, it does not exist).  As one room was finished we discovered the adjoining room was less than appealing!  You know, you have been through quite a bit with health insurance issues alone, much less dealing with the CML, having to move around from school to school is something I cannot imagine.  One thing that continually amazes me about you, throughout this all, you bike, hike, kayak, and do all sorts of awesome activities.  Some would be feeling sorry for themselves, instead you are constantly on the go, not to mention your teaching, your profession has my utmost respect, I have viewed first hand how hard a teacher works and how disrespectful parents and others can be, (not to mention the children you teach).  Don't care if anyone else thinks this or not, but you are a major inspiration to me.

[Tedsey]

Marnie,

My utmost respect to those who teach (maybe I am biased because I taught elementary for 9 years, but I don't think so)!  Most of the country does not know what teachers go through.  But they LOVE to highlight the very few horrible ones and then make every teacher a scapegoat for all that is wrong with our children.  Not sure why this happens.  And bless my son's preschool teachers for what he has put them through!  I fear for his kindergarten teacher next year.  Well, it is good that some of us know the truth.  Hope pammartin and I count!  You have also been my inspiration Marnie.  So, Pam is not alone on that one.  I guess we will have to fight over who will be the president of the Marnie fan club!

Ride on babe,

Teds

[pammartin]

I bow to the captain, but will stand proudly as a first mate for the fan club.

[Marnie]

Aww. . .you guys are too much.  I'm amazed at the people out there who do parenting right. . .you guys make the difference!  I always wonder how parents can be patient 24/7.  I get to send the kids home at the end of the day.  I will never forget the time many years ago when I decided I was going to call every parent in the first week of school (with a middle school schedule, this was no easy feat).  One parent picked up the phone, and when I said to her, "this is Mike's teacher and I just want to let you know how much I enjoy having him in class".. . . .there was L-O-N-G pause, and then the mom said, "Are you SURE you have the right number??!!"  Mike, as you may have surmised, was not an easy child. 

I came back from my appt. feeling a lot better.  The change in numbers was, indeed, due to a change to international scale.  I am, unfortunately, starting from a  new baseline, because the other tests were all done at a different lab, but the doc is not concerned.  We'll do the next PCR test in 2 months, and when we have 3 tests in a row from the same lab we'll both be very happy.  I do like this guy.

After that appt, I got my chest mashed, and now am off to the dentist.  This morning, my husband said, "Oh. . by the way. . .you have an appt at 1:15.. .the dentist office called yesterday."  I surely didn't have that one on my calendar.  I either have amazing luck, or I planned ahead 6 months ago when I last got my teeth cleaned, and knew that I'd be scheduling a doc appt on a Tuesday (only day that my new onc is at the midtown office) sometime in January. 

I will be sending out your club membership card and decoder ring. I gotta pass the word on to my husband.  He needs to start being more impressed with me!! 

Marnie

[pammartin]

Marnie, you have been poked, prodded, squished, and cleaned today.  sounds like you had a major overhaul.   can't wait for my decoder ring, my husband and son will be so jealous!

[Susan61]

Hi Marnie:  I am so glad you got a satisfying explanation.  What a day you had.  I get my PCR results tomorrow, and I was thinking about you since you posted about yours.  I am overdo for my Mammo, and I know I should go.

Last time I had one they used that new process, and DAMN did it hurt.  I said if you do not have breast cancer, this machine will certainly give it to you.  She warned me that it was more painful than the old machine, but that the picture is crystal clear with this new thing.  Guess, I will have to go eventually for another one.  I feel first things first, and I want my PCR results.  Now you can relax or do some more painting. 

Susan

[GerryL]

Hi Susan,

Thanks for the warning on the mammograms - I'm avoiding them until I turn 50.