22 replies to this topic

[CallMeLucky]

So as my next visit approaches I am finding my anxiety building up and I am less willing to settle on the information I have gotten so far.  I am frustrated from my last test result, for those who don't recall I went from a negative PCR to .004%, which I thought was a significant increase but my doctor says is still MMR.  The problem I have with this as far as I can tell, there is no way to tell if that is MMR other than the fact it is three decimal places out, which seems to be the way they look at it.  Over the past week in anticipation of my test coming up I have been doing a lot of reading about PCR and I made some calls to the hospital and actually spoke with a pathologist.  I asked what the lab standard for MMR was and she couldn't tell me.  She basically led me to believe that my result was "3 log reduction" and anything beyond that was probably not reliable given the way they do the test.  I asked if they had a conversion factor for International Scale and she didn't know what I was talking about.  She told me to contact the Chief of Pathology.  I sent him an email, he read it, but no response.  I also did some digging into the methodology used and learned that my lab uses the TBP control gene to perform the test.  They amplify it in my blood sample, then a sample of K562 and compare.  This is not sitting that well with me.  From my conversation with the pathologist it seems there is an issue where it is not only the quality of my sample that factors into the test, but also the quality of the K562 line, which can vary.  Furthermore I have learned through reading some research papers that TBP is not a good control gene because they found that the level of TBP varies in leukemic and non-leukemic cells, which can throw off the results.  I find all of this unbelievably annoying.  At the end of the day I realize that it is probably splitting hairs and the differences are probably somewhat minor.  I also get that matching up to the "MMR" standard that they derived from the IRIS trial does not say with certainty how things are going to play out.  One thing is for sure, I am at two year mark and if my PCR shows a further increase it could mean an issue, but with the way this lab does things and a lack of explanation from the people who are supposed to be the experts, I am feeling really anxious.  I accept all the side effects and BS that comes with CML, I don't like it, but I accept and deal with it, the testing nonsense is really wearing on me.

[pammartin]

Hi Lucky,

I know nothing of the logistics of the testing and I am not going to even try to respond by pretending.  When I first began this journey I focused on the PCR test and my levels at first went higher, then began to drop dramatically.  I also focused on the daily, then weekly, and monthly labs, they were my clues (or so I thought) of what was happening with my response.  I have read quite a bit about the PCR tests, I do not have your understanding of them, but I admit I am not nearly as enamored of the PCR as I once was.  There are many factors that play into this test, and as most people on here have noted, each lab is a bit different and the scale the lab uses is yet another consideration.  I guess it all comes down to when the blood is drawn, what testing measures are used, how long it is stored, and how many cells happen to be hanging out in the sample drawn, too many factors for me to appreciate the validity and accuracy of the test.  Each one of us has our demons, some fight the side effects, some wish to reduce the dosage, while others are forging the way to perhaps one day get off this roller coaster.  I have great intentions, I say the CML, testing, and PCR are not going to affect me but my intentions fall flat.  Wish I had great words of wisdom for you, instead all I can say is I am listening.

Pam

[Judy2]

Hi Lucky,

I'm with Pam in that I don't know much about the technical side of the PCR test but I wanted to respond to your post. I think somehow we have to find a way to incorporate our testing into our lives. We will be having these tests done at a minimum of 3 month intervals for the rest of our lives and if we let the anxiety overtake us before our tests and waiting for the results we will all spend a good deal of our life worrying. I know this is easier said than done but somehow we have to be able to allot only a small portion of our lives to CML. Unfortunately, CML is going to be with us forever and I'm sure there will be times for all of us when our PCR tests fluctuate but we have to try and not let this drive us crazy. My step-father was a physician and whenever I got sick, when I was younger, I used to spend hours pouring over his medical books trying to figure things out. Guess what, it only made me more anxious. You know what they say.... "A little knowledge in the hands of fools is a dangerous weapon". If you trust your doc then have faith that he won't steer you wrong. It is important to stay informed but if you find yourself spending endless hours on this stuff it may be time to take a step back, trust the people who are in charge of your care and try to enjoy your life. I know this is easier said than done but it may be a goal for us to have.

Judy

[Sneezy12]

I would insist on changing labs. This is my approach, posted previously. Frank

"My local Oncologist draws the blood and sends it to the local hospital Lab a few blocks away. At my request, they use  The Mayo Clinic Lab in Rochester and overnight it. They do NOT use their usual referral Lab. The results are faxed back in no more than 72 hrs.to the hospital Lab and they immediately Fax it to my Oncologist.

If one is on-site at The Mayo Clinic, the results are available in 24 hrs. Frank"

[Dina36]

Hi Frank ,

Thanks for sharing that info, my husband said the same thing that on my next PCR Test I should  make a request

to have it done at mayo Clinic. I've had 3 PCR Tests so far, the first two they sent it to some Institute in CA and I had the results back

within 5-6 days which is not bad, however my third and latest PCR Test they send it to some another lab called Miraca Lab and it took 11 days to get

the results back. I know it was a holiday around that time but it would be nice to have the results back a little faster so we dont suffer that long.

I wonder if my insurance would cover it if I want to have it done at Mayo Clinic next time, how much does one PCR cost

anyway???? Guess I need to either ask my doctor about it or call Mayo Clinic to find that out.

Hi Lucky,

The waiting period is the worst for me, I swear I'm not able to function and act normaly, I get so depressed and every time I hear the phone ring my heart rate

goes up and I start to shake. I know that I need to relax and do my best not to think about it 24/7 but this CML thing is just not for me!!!!!

Dina

[Sneezy12]

Dina-Call The Mayo Clinic operator and ask for the Lab. The Number is 507-284-2511. They should be able to answer your insurance questions. Frank

[Sneezy12]

The Quantitative bcr/abl test is about $573. Frank

[LivingWellWithCML]

You know that I have agonized over PCR testing methods and sensitivity as well....to the point of obsession.  The lab they use for mine is using an outdated housekeeping gene, and that drove me bonkers for a bit.  I tried to get a referral to the pathologist who signed my last PCR test so I could grill him about the specifics, but no one would refer me and basically said that PCR is exquisitely sensitive, but not perfect.  I finally started settling down and am now reading "The Relaxation Response", so I can train myself to chill out about this ..... Especially around testing time,  I am making progress, but slowly. .  Hang in there and remember the fundamentals that you know all too well - PCR is not perfect.  And we can only control what we can control.  Of course, we could always make a bi-annual visit to Druker or Mauro and get testing done there .... I have debated doing that for my own sanity, but my wife has since convinced me to relax and enjoy the life that the TKIs are giving me (us).  Let's catch up soon!

[CallMeLucky]

I've been doing Tai-Chi, so far it has been helpful for physical side effects, but not so much the peace of mind, haven't figured out the meditation/relaxation part.  I haven't considered going to see Druker, but I have considered getting my blood sent to his lab to see what it comes back at.  Probably not worth it.  My head is just messing with me.  Most of the time I keep it together but it is hard at moments.  I have a lot of death around me with the loss of my B-I-L and watching my F-I-L dying.  We moved F-I-L to hospice about a week ago.  My children are in therapy to deal with the loss of their uncle and impending loss of their grandfather.  So I sit in on the sessions, since they are so young, and I listen to the therapist talking to them about death and loss - it's just so prevalent in my life that even when I try my best to keep my mind off it, I can't.  Last night I had an unbelievable nightmare where I woke up screaming, that never happens to me.  I don't remember much about it just the face of an old man coming towards me in the dark - I think what really spooked me was that it felt very real.  I chalked it up to the stress and I am aware enough to know that right before my visit I get more anxiety.  In the beginning it was more obvious, and it was understandable, at two years out it is more below the surface.  Also hard because I haven't felt much like I can talk about my CML.  Everyone in my family is having such a hard time with all the tragedy, I just always put on a smiling face and tell them I am fine, no problem.  Not that it does any good telling anyone how tired I am or that I am in pain most of the time - no one wants to hear about that and really who wants to be that person anyway?  Still it's hard always having to pretend everything is fine and its no big deal.  It is a big deal, but I can't put that out there, there's just no one to lean on - I have to be the strong one, I have to hold everyone else up.  For the most part I'm ok being in that role, I don't want to be the victim or the sick one, but sometimes it is hard....

Ok, enough whining I have to go to bed so I can get up first thing in the morning and take my cub scout den fishing.....

[pammartin]

Judy Judy Judy,

'A little knowledge in the hands of a fool is a dangerous weapon', she writes.

I am safe, completely safe, CT scan on my head last Sunday remember?  exact words, 'they found nothing'. 

I am staying away from the fool criteria, I fear I fall into that vat face first on a continual basis.

[Dina36]

Thank You Frank for the info, I'll call them.

[pamsouth]

Judy, Judy, Judy,

I have been a care taker to long, to many times. Much of my family is in the medical field and I'm very sure even they don't trust much of our health care.  Be careful here you are  your own best advocate.  Don't leave it to some one else don't care what their title is.

Keep up your homework;  get two, three, four, five opinion, how many you think you need, pray, go with your gut, and finally make your own choices/decision, (or yes you would truly go bananas) then I can live with it, I did my best to be informed.  But to blindly follow and trust, been there, done that, with regrets. 

Could be your famous last words " If you trust your doc then have faith that he won't steer you wrong" Think about that, they are only human, too. 

Lots of mistake made in the medical field, I know been around them to long.

Signed;  fool me  once, fool me twice, fool me three times, and shame on me.

PamSouth

[LivingWellWithCML]

Yeah, I totally get what you are saying...that's a very difficult role to play for your family and would be tough enough *without* CML in the picture.  I will let you know when I crack the anxiety code, cause I am not there yet either.  Have a great time fishing and perhaps we can try connecting again soon to compare notes...

[Trey]

I had a nightmare about a guy dressed like Shakespeare and wearing a huge ostrich feather in his hat.  He just kept staring and staring.  He had an evil grin.  Haunting. 

http://community.lls.org/people/PhilB

[Dina36]

Trey you are so funny you made me laugh so hard.

[pammartin]

Perhaps you have been psychologically affected by something you viewed........

[PhilB]

Mwwahahahahahahaaaaaaaaggggghhhhh!

[Happycat]

Lucky,

I believe you have counseled others not to stress over the things that are outside their control.  This is one of those instances.  The choice of control genes is not yours to make, and it is doubtful that anything you say will change which gene the lab uses.

Regarding TBP as an appropriate control gene, just how far off the mark is it?  How big of a variation will it produce?  What would the error bars be - +/- 0.001, 0.01 or 0.1 or 1.0?  That could certainly make a huge difference.  But if the average uncertainty the TBP introduces is relatively small, then it is not worth worrying about.  That is especially true if the error bars for the gene fall within the expected error for PCR in general.

I think what you are getting at is the quality control of the test results you are receiving from this lab.  I'm a bit surprised the person you spoke to couldn't give you a value that represents MMR in their lab. I suspect she personally just didn't know, not that the lab hasn't established a value.   

Also, don't lose sight of the fact that anything dealing with your body fluctuates normally.  Your temperature fluctuates throughout the day.  Your weight fluctuates.  Try taking your blood pressure three times in a row and see how much that varies.  (I do that all the time, because I never trust the first reading.  All 3 are always different.)  So why shouldn't your PCR fluctuate a bit, too?  As long as it isn't a stead trend upward, with a significant slope, it's fine.

I'm sorry you have to keep this bottled up inside, separate from your loved ones, simply because of all the other grief they are handling now.  But this is a good place to bring it. 

I hope your FIL doesn't suffer too badly, and they can keep him comfortable.  Give your wife and kids some extra hugs.  I'm sure they could use it (you, too).

Traci