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Blood test results

When I get my report on the PCR test, it says resulted with the date and time and the results are written out by the MD at the lab.

The nurse explained that resulted means when the results are interpreted and report is written, not when the test is actually completed.

The reason I asked is because my blood draw is on Mondays and the report comes 6 days later on Sunday.

The blood always gets there within 2 days and often within 24 hours. I don’t know how long it takes to do a PCR test but wondering if it is being done quickly to get accurate results.

 

I have been off Sprycel  for 7 weeks now and my PCR test was done last week. Results were 0.0000.

So can I be confident that the test is being done in a timely manner. If they do it as soon as they receive it, I am not sure why it isn’t resulted until 6 days later. 

Does anyone know if what the nurse said is correct.

 

What is your question exactly?

Once they receive the blood, how many days does it take to do the PCR test. One day? Two days?

Once it is completed, does it just sit until the MD gets time to do the report

I see your question.

As soon as the blood is sampled, EDTA is added to stabilize the blood sample (prevent coagulation) and cooled. This gives time before the blood is analyzed without degradation of the sample. Testing is usually done within hours to a few days depending on if the lab is located where the blood is sampled. The degradation is very small when the sample is prepared properly - so the measurements are valid. In CML, they are testing for bcr-abl protein. Proteins degrade slowly (when prep'd).

Once the measurements are made - then days or a week or more can go by before the MD signs off on the report.

 

Thank you! That is very helpful. The blood draw is sent out the same day to a lab several states away. The lab receives it within 48 hours. 

Good to know I can trust the results. I have had 0.000 for over a year now and prior to that 0.0000 or 0.0067 for a over a couple of years and prior to that MMR or better.And now have another 0.000 since stopping the Sprycel 7 weeks ago.

I will be staying off the drug until I see my onc early March and will have another PCR. Will be deciding then whether to keep going this way or go back on 20 mgm Sprycel or one of the other drugs.

it seems like things are at a point where there could be a 40-50% chance of TFR. On the other hand, Cortes report I read said 25% chance until the 6 year mark and then the odds are much greater if maintaining the PCRU without the drug. 

I  want to have some confidence about the test and accuracy since I have a big decision to make soon.

Kali,

Ideally you should be testing once a month while off drug. The most critical time is the next six months off drug where the probability of losing TFR is greatest. Dr. Cortes mentioned he prefers patients who want to try cessation to stay on drug for six years (as you pointed out) while PCRU. He feels two years PCRU is too short. His latest data seems to support that recommendation. As I look at the data, however, six years is where maximum likelihood of success occurs. It's in the tail of the distribution curve. In other words during the first two years, success is lower, then rises dramatically after two years and continues to rise albeit much slower through the six year mark. So patients who want to try after two years are still in a good spot.

Personally - I feel that low maintenance dose (20 mg) can be an excellent strategy to manage PCRU until the two, three, five, six year mark. Side effects on 20 mg are much lower (I am on 20 mg and can't feel any). Cost can be a consideration as well. In my case, I do want to get off drug so my body can normalize. I am anemic because of Sprycel (mildly so). I'd like to see if my blood counts will restore to a normal normal, not stay at my current normal.

Regardless - the risk of trying is low. If your PCR starts to rise, you can always go back on drug and try again in the future, but the clock starts over.

One additional point - some fear trying cessation because they might lose response permanently. CML (cancer in general) is not like a bacteria infection. During our treatment, we never kill all of the cells anyway. There are always 'bad' cells lurking around (especially leukemic stem cells). The question is whether the remaining cells are sufficient to restart CML (the disease). It is theorized that once CML burden is reduced below a threshold amount, the normal immune system can keep it in check. We just don't know what level is required. Our bodies certainly make CML cells all of the time naturally (bcr - abl translocation is hard to avoid). One cell is not enough to down regulate the immune response, but are 1,000,000 cells enough? We don't know. Our immune system is a magical place. Which is why doing everything  you can to stay "immune system" healthy is wise. Vitamin D.

Do people still have pleural effusions on Sprycel 20 mgm or is it fairly rare?

If we start TFR and numbers start coming back,  does starting over mean we have to wait several years again with pcru to try TFR again?

I have been off drug since since November 30th due to pleural effusion which has finally cleared up except a very small amount. 

Numbers stay 0.0000, but retest again on February 13th and will also be deciding what path to go:

Continue TFR or go back on drug until I get to the six year mark which will be in 16 months.

 

Kali - I can only comment on your first question.  I still have a small remaining pleural effusion on 20 mg Sprycel.  The pulmonologist said he was pretty sure that it would never go away completely as long as I was on any amount of Sprycel, but he admitted that he was just speculating.

Hi Kat! Good to reconnect with you!

Thanks for responding with how you explained your experience. That is the sort of thing I am wondering about.

There has been some discussion to switch to the lowest dose of Nilotinib.

I was put on Sotalol 40 mgm twice a day because of the AFib in the hospital when they removed the fluid. They think it was stress induced. But sent me home on this new drug for now. I will have to go off of it for both Sprycel and Nilotinib I think.