18 replies to this topic

[Dina]

Hi there,

Today I had some blood work done for my first PCR test along with some other tests.

I would appreciate if any of you could tell me where were you about this time (three months),

or what should I expect?

I'm nervously waiting for my first results.

Thank You Everybody!

Dina

[Marnie]

Hi, Dina. . .

You will get many different answers to your post, because people's results are all over the map.  Everyone varies in where they started, what med they are on, and how they respond to their med.  It is better to compare your results against yourself than against other people's results.  I have found only frustration in comparing myself to others.  The important thing is to watch the trend of your own PCR results over time.

  I had blood drawn for my PCR this morning, and it's always an anxious week and a half waiting for the results.  I always call to get the results rather than wait until I see the doc.  I like to have some time to look at the results and figure out what questions I have for the doc, rather than looking at the results when I'm sitting in his office.  I feel that my time is better spent if I have the information ahead of time.

Good luck on your results! 

Marnie

[GerryL]

Hi Marnie,

Best of luck with your results.

[GerryL]

Hi Dina,

Marnie's right - everyone is different. The guidelines are probably the best area to compare yourself against. I never did get to see my 3 montly PCR as my lab didn't seem to be able to do a PCR from a BMB.

Let us know how you go.

[pamsouth]

I'm with you Dina,  I would rather have the results before sitting in the office and the doc spring something on me that I have not had time to digest or thing about or look up.

Recently I went with my husband to the doctor.  While in the doctors exam room, He ask the nurse for his labs.  The nurse said, well has your doctor went over the labs with you yet?  He said no but I want my labs.

She did give him his labs.  I think when he started asking the doctor about some things on the labs I think the doctor was a little bit taken back.  Last year the doctor had put him on some med's that he was allergic to and they about killed him.  His labs were a mess and I was taking him to multiple doctors trying to find out what was wrong with him.  The med's he was allergic to was a form of Mobic for arthritis, he kept getting worse, then the doctor just kept piling on other pills. Eventually he couldn't get up out of the chair or the bed.  I was dressing, bathing and feeding him. He couldn't even hold his head to eat.  He was 220 lb of dead weight.

I finally weaned him on the med's and got the doctor to send him to Physcial Therapy.  He is doing well now.  He only take 1000mg a day of metaformin for diabetese, and 2.5 miligrams of lisiopril for blood pressure.  As long as he standing at work and moving around and keeping his weight down to about 200lb he is doing well without arthritis med's.

My husband is 70 years and has some memory loss (but still able to work part time as a greeter) and he doesn't speak up for himself.  For the last 1 12/ years I go with him to the doctor.    I am kind of under the presumption that most receptions, nurse, doctors, don't like to give out the labs before they talk to you.

I was a little upset myself a couple of time as my previous oncologist  has sometimes gotten my labs first, before I had a chance to look at them.  Then finding out after she gave me unduly alarm, and I was able to get all 3 or 4 pages of the PCR report, that it was not the picture she had painted.  She has to many patients and I doubt that she knows much about CML.  Come to find out the lab was like a 3 or 4 page.  The one page where the counts were slightly up, was what she was looking up, but the page I was looking at was Undetectable.  Come to find if she had looked at the fine print on the PCR, the lab said they had a made a mistake in the mix, or something, and they did another lab from a new well, in fact there were a total of 3 wells they drew from for the PCR.  The first well they had used the wrong compound mix and the other two were Undetectable.   Just the same she drew some more blood, and the PCR came back Undetectable again.

So yea I would get the PCR labs before you go into your ONC so you have time to digest the report.  Hey make sure you get all the pages, like I said one of my PCR had 3 or 4 pages.  I kind of think my previous onc was either in a hurry or didn't have the time to do her homework.  But then again she has been on me for the last year to change from Gleevec to Tasigna, thus i went for a second opinion and will start having my labs drawn locally.  My previous onc said their are no PCR labs done in the state of Indiana.  Indiana University of Indianapolis, about 15 miles north of me does their own labs and interpret them.  Did she know that, who knows?

PamSouth

[NClivefortoday]

Hi Dina - I just got diagnosed with CML myself and have been on Sprycel for two weeks. So far so good (WBC down from 134 to 36). Would love to hear about your progress on your PCR test as I will be about two months behind. I'm starting at I believe 149%. Are you also doing a FISH test?

Hope you are doing well.

Best Regards, Michael.

[Dina]

Hi there,

Today I had an appointment with the nurse practitioner since my doctor is on vacation and she went thru

my blood work results with me, I know she is just the nurse but she is one sweet lady and been seeing CML patients for more then 30 years,

I swear she knows more then my own doctor...luckily everything was normal, but the PCR test wasn't there yet, so she made some phone calls and

it looks like they did the Fish test instead, the test showed no abnormalities. So, they had to draw some blood again today and reordered

the PCR test. Now I have to wait for the results again.

However, could anyone please tell me if the Fish test was that important since she didn't make a big deal out it,

just mentioned that it has no abnormalities. What she really wanted to see today was a PCR test results.

So to answer you question Michael, yes they did the Fish test by mistake.

Thanks guys!

Dina

[CallMeLucky]

Dina - If I understand this correctly, this is wonderful news.  You need to clarify what "no abnormalities" means exactly.  The FISH test usually samples anywhere from 200 to 500 cells and looks for the PH+ Chromosome.  If "no abnormalities" means that out of the 200 - 500 cells they looked at, 0 were PH+, this would mean you have achieved a complete cytogenetic response at 3 months which would be outstanding progress.

I know people get drawn into the PCR - but a negative FISH test is a better prognostic factor for long term survival.

Please check with the nurse to confirm, my hope is that this is the case, in which case congratulations....

[Dina]

Hi Lucky,

After reading your comment my eyes got teared up a little, I hope that you are correct Lucky since I don't know

anything about these tests, its still all new to me.

I will definetly call them tomorrow and ask to explain it to me once again.

Thanks

[Pin]

Yay Dina! I hope this means what we think it means!

[pamsouth]

Hey Dina that is  celebration new on your FISH.  Actually I put more stock in the FISH test then I do the PCR.  Other might disagree, but the oncologist always says; on the PCR, very sensitive test, studies thousands/maybe millions of cells, but/however.........  much room for error, as it is processed and magnified over and over.  Sometimes blood get very tainted.  That is why they look at the trend of PCR over a long period of time, but I still get more excited to have a good FISH, then PCR.  Also they are studying a drop of blood which can change from 1 well or drop of blood to another well or drop of blood.  I have seem them drop t or 3 wells for my fish or PCR when they are questionable. Also I like a good labs, hate to get to low in my counts, some oncologist say don't worry if counts get to low but my CBC are usually pretty darn close to normal

Congrads on your FISH!!

PamSouth

[Dina]

Hi everybody,

My doctor called me today with my first PCR results, so if anyone please can explain them to me, Trey please.

At diagnosis: BCR-ABL t(9;22) fusion 20.443

                    BCR-ABL: ABL Ratio:   -0.695

Today results: BCR-ABL t(9;22) fusion 0.006 High

                     BCR-ABL: ABL ratio 2.838

My doctor wants me to repeat the same test in 6 weeks, don't know why and I'm kind of nervous about that

and want to see me next week to go over these results with me.

Please help me to understand these results, anyone?????

Thanks!

[Dina]

One more thing I forgot to add is, I was on Tasigna  for three and half monts.

Thanks.

[Trey]

That's great.  Going from 20.443 down to .006 is a personal 3+ log reduction (Major Molecular Response - MMR), and a 2.838 log reduction from the lab standard.  Either way it is impressive for such a short time.  The word "High" is inserted because anything over zero is high for bcr-abl, since it is not a normal substance.  The lab is using the term "ratio" to mean log reduction, which I personally do not agree with the usage, but I'll get over that.

[hannibellemo]

That is wonderful news, Dina. No reason to repeat in 6 weeks, guidelines are every 3 months until MMR and then every 6 months. I'd ask your onc what his reasoning is on the repeat; this is a very expensive test, no need to tick your insurance company off at the very beginning.

Don't forget to ask for copies of your tests at every appointment.

Pat

[Dina]

Thank you Trey thank you thank you thank you,

all day I was waiting what you are going to say since my doctor only said "it looks good but I want to see it even better so lets repeat the same test in 6 weeks"

nothing else, ahh I feel so relieved now.

Hi Pat,

I agree with you, but thats what he wants I guess. Maybe he thinks I can get to PCRU in 6 weeks. Hope and pray thats the case.

Thanks guys.

[tiouki]

That's great results Dina ! I'm happy for you go celebrate!

[PhilB]

Congratulations Dina.

Those are brilliant results, marred only by the lab not understanding what the word 'ratio' means - but you can't have everything.  I am frankly amazed that your doctor wants more as soon as six weeks (unless of course the first set of results already took 6 weeks to come back, which is not unheard of.)  If he genuinely means 6 weeks after the first set then I'd be on the look out to see if he's popping little white pills and twitching a lot.  Just so long as your insurance sompany is happy to pay for them!

Phil

[Dina]

Thank You Pierre!

I agree with you Phil, I have an appoitment with him in a few days so I will know more what he really meant.

Thank You everybody!