11 replies to this topic

[Mayra]

I'm so sad today my numbers went 6.29 at 2 month  to 6.49 at 5 months.  I don't know what to to think!!  Should I request a change in meds? I'm on Sprycel 100mg.  I just can't stop crying.  I'm so emotional right now.  I'm wondering whether I should make an appointment with CML specialist.  I'm in Austin so MD Anderson is a short distance away.

[CallMeLucky]

Mayra - I am sorry you are so distraught about this, you are new to this so I understand why this would seem scary to you.  You are still very early in treatment and PCR numbers can swing a lot early on.  PCR is a test that should be used to monitor low level disease once you are in a complete cytogenetic response.  The most important thing you should be looking at right now is a FISH test.

How are you blood counts?  Have they returned to normal?

What was your PCR at diagnosis?

Have they done any cytogenetic tests on you either via bone marrow biopsy or a FISH test.

A second opinion at MD Anderson would not be a bad thing, but I don't think it is necessary just yet.  Please respond on those questions and it will help paint a better picture of where you really are.  If you have not had a FISH test, you should discuss having one with your Dr.  If he doesn't want to do it, then I would go to MD Anderson for the second opinion where they would definitely do it.

[Mayra]

Lucky,

The following are my results:

   Lab Standard.              International

12/12                3%.                           Not Done

2/13                  .37%.                             6.29 %

5/6                 Not done                          6.49%

I had a FISH done initially and I asked at two months and he said it wasn't necessary.  I will ask again tomorrow.  According to the nurse my Onc. says I shouldn't worry that I'm still on track.   Doesn't feel that way.  I requested an appointment for tomorrow.  Anything else I should ask?

This is the detailed explanation that came with my test:

Patient Name: , MAYRA Received: 5/7/2013 Reported: 5/10/2013 Specimen(s) Received A: Whole Blood with EDTA Clinical History 205.10 Procedures/Addenda BA1PMA: BCR/ABL1 by Quant RT-PCR: Major(p210) Interpretation This specimen is positive for the t(9;22) BCR/ABL1 Major (p210) fusion transcript. The percent BCR/ABL1 transcript on the international scale (IS) is 6.49%. An IS of 100% is designated as a universal baseline applicable to all patients. A 3 log decrease from this standardized baseline, or 0.1% IS, represents a Major Molecular Response (MMR). Achieving MMR by 18 months of treatment is associated with better outcome. Current and Previous Test Results Accession # Collection Date BCR/ABL1 Major (% IS) BCR/ABL1 Minor (%) NMO13-467 2/18/2013 6.29 Not Performed NMO13-1424 5/6/2013 6.49 Not Performed Results Positive for BCR/ABL1 Major (p210) fusion transcript; 6.49% IS Reference Range: No BCR/ABL1 Major (p210) fusion transcript detected. Methodology: This test was performed by real- time, reverse-transcription polymerase chain reaction (RT-PCR) to measure the quantity of BCR/ABL1 Major (p210) fusion transcripts. Amplification of endogenous ABL1 is assessed as a reference for relative quantification and RNA quality. The normalized copy number (NCN) is derived by comparing the amount of BCR/ABL1 mRNA normalized to ABL1. NCN is converted to an international scale (IS) percent by comparison to a standard curve generated by using Asuragen ARQ IS Calibrator PanelTM. The lower limit of quantification for this assay is 0.0063% IS

[CallMeLucky]

You're at a slight disadvantage because it looks like they changed labs or reporting between your first test and this most recent one.  Here are the things you need to keep in mind.

1) 6.29% and 6.49% are the same result, so while your numbers did not go down, they did not go up.  PCR is not accurate enough to consider a change from 6.29 to 6.49 an "increase" that result is flat.

2) At 5 months into treatment you are somewhere between a -1 and -2 log reduction (closer to -2log).  This is very good.

3) It is not unusual to see a temporary plateau and then a bigger drop the following test.  Many people have seen this and gone on to have a good response.  You are only 5 months in so it is too early to say things are not going right, this is particularly true with PCR test.  From what you have here, things are going well.

4) You really should get a FISH done.  A FISH test will give you a much better indicator of where you are at this point.  Based on the log reduction you have so far you are probably close to CCyR and I think if you see that it would do a lot for your mental well being.  PCR will drive you crazy, FISH is much more straight forward (i.e they look at 200 cell and tell you how many are leukemic)

I understand why you feel the way you do, but at this point I don't think you have anything to be really disappointed in.

Hang in there, I know it sounds cliche but this is a marathon it is not a sprint.......

[Trey]

I also think a FISH is better until CCyR is achieved.  Also, give it another PCR cycle before worrying too much about this.  There appear to be several inconsistent factors in your tests that could lead to variations in results. 

[Pin]

Mayra, I am so sorry for how you are feeling right now. Boy this journey can be so scary, upsetting and frustrating at times, you are still very early on in treatment so give it time, and be kind to yourself - someone said that to me early on in my treatment, and I often forget it - it is good advice.The best advice that I can give you is to listen to people on this board, some of them, particularly those who have already responded to you, are very, very knowledgeable. I try hard not to panic, but when I do - it's nice to get some reassurance from others here who give good advice and do understand what we are going through. All the best. Pin xx.

[Mayra]

Just saw my doctor for a follow up.  He said we're staying the course.  I asked for a FISH he said it was not necessary.  That the meds are working and our goal is still MMR at 18 months.  He's worried about my mental well being and said I should see a counselor. 

He will retest PCR in three months.  That will be enough time to see trend.  I asked about curcumin and he said I could take it as long as I'm not going into it thinking its going to help my CML.   he said to live my life and let worry about the details.  Easier said than done.

[GerryL]

Hi Mayra,

When I was first diagnosed I didn't actually get a copy of my results in my hand and just had the doctor tell me what stage I was at. My specialist also set my appointments at six monthly and I just moved through each stage in that time frame.

So try not to stress too much and wait and see your results in three months.

Be careful with the curcumin as it can also work as a blood thinner. I wound up with a few extra bruises while taking it, possibly due to my anemia, so stopped taking it after a month. I still achieved PRCU. 

[Mayra]

So I've been doing some research on the lab that performed my test:

It turns out they only perform the test on Monday, Wednesday, and Friday. 

They also indicate that 72 hours is the threshold for testing.

http://www.medfusion...r_1.24.2013.pdf

I have a feeling that the first PCR was done later than expected. 

It was taken 2/18, received 2/19, and reported 2/26 which may have indicated a lower score initially.

The second PCR was taken 5/6, received 5/7, and reported on 5/10

Maybe it's my way of making myself feel better. Should I be concerned  about this lab?

Mayra

[GerryL]

Not sure how it works at your lab in the States, but my results can take a couple of weeks and a lot of that time the results possibly sit on someone's desk.

Wait until your next test - it is all about the trend.

[CallMeLucky]

For the most part it seems like your doctor knows what he is doing and my impression is that you are doing well.  The only thing that would frustrate me is the not willing to run the FISH report.  He says it is not necessary but it would provide a better picture of where you are at this stage and I think a CML specialist would run it.  I think your good to stay the course but if it is really driving you insane, then go for the second opinion.  If you can tolerate waiting for the next PCR then that is probably the best bet.  The good thing with CML is that it is a slow disease so waiting three months is not going to be a problem in chronic phase, even if things were not going great.

[Mayra]

Thanks for the feedback everyone!! I'll wait it out.  I'm sure progress will come I just have to be patient.