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Recently diagnosed with CML July 2017
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Hi Suhas,
42% is quite a low figure for Accelerated Phase - do you know what criteria your doctor used to define AP? Was it blast cell count?
Most guidelines out there are for patients diagnosed in the chronic phase, and the number often quoted is 10% at 3 months. However, given you started in AP I am not sure this is a realistic target.
When do you have your next PCR test?
David.
Thanks for reply David. You are correct my bone marrow report has given as CP Phase but my WBC was shooted to 160000 may be that's the reason. I feel better now . My next Bcr abl test in January.
Regards
Suhas
160,000 is quite high, but not at all unheard of in a new CML patient by any means. I've seen people post white cell count at diagnosis well in excess of that. Normal range is 4,500 to 10,000 cells per microliter (cells/mcL).
I was diagnosed at about 150,000, for what it's worth with blast cells at 11% - technically accelerated phase, but run the same test again and you might get a chronic phase result.
David.
Hello David
Today I got my Bcr Abl report it shows .018%.is this a good progress.
Thanks for your support
Suhas
Assuming that is on the International Scale (and probably even if it isn’t) then 0.018% is a phenomenal result. It is deep into MR3 (MMR - Major Molecular Response) which is considered the “safe haven”for CML patients. You are not far off MR4 which is a very deep response.
You should be absolutely delighted with that result. It shows you have responded to dasatinib very well and very quickly. Congratulations
David.
Great, Suhas
160.000 is not that high at all!! I was diagnosed with 258.000! What counts the most for AP and BP is the numbers of blast in blood/bone marrow. I had 1.2% blasts in my marrow and 3% in my blood, so i was in CP. You're doing great. 0.01% IS is a great response so far. You're in a very good place!
Thanks David my wife and Son are happy. But I have heard people telling it can always come back and we can see that increases in % with Bcr Abl ....is there anything which I have to make sure it's under control.
Thanks for your text it has increase my confidence and helped to be more positive.
Resistance in low levels are not common, specially after a couple of years. Blips are very common, that's because of the inconsistency of the test - the margin of error is a half log (i.e: something like a 3 fold increase/decrease). The most important thing you should do to maintain your response is to take your medication as prescribed. Many patients after a good response start to missing some doses. that's not cool because it puts your response in risk.
Sure, it's possible your PCR could rise in the future. But it is very unlikely to happen in a meaningful or major way - once patients have responded well to the TKI they almost always continue to respond well to it. You will get blips on the way - perhaps your next two results will be a little higher than the last one, but if they are it's not a cause for concern. Especially if they are well under 0.1%. It takes a while to get used to this, and no worry when things rise as they usually fall back again.
There is one major thing you can do to help make sure everything is under control, and that is to take your pills every single day - with no exceptions ever! I find using an app on my phone helps me ensure I never miss a dose. Non compliance is the biggest reason that some people's CML does not stay under control properly.
David.
David and Lucas are right, the best thing you can do to make sure your disease remains at the molecular level - and your response is pretty impressive - is to take your therapy every day. Studies have shown that if you consistently miss more than 3 doses per month, you increase your chances of developing resistance.
On the issue of high white cell counts at diagnosis. Mine was just 17 even so, due to my very enlarged spleen, fibrotic marrow and 5 % blasts, it was considered that I was approaching accelerated phase. Later, when I asked why my WBC was so low, I was told that most of my abnormal cells had taken up residence in my spleen! There are so many different presentations at diagnosis.
Congratulations on your very good response to dasatinib.
Sandy
It's possible, but not at all common to see skin depigmentation with dasatinib. It is listed as an "uncommon" side effect. As a side effect, it's not an indication that it's not working of tat the disease has spread.
If this has been caused dasatinib, because it would be uncommon, it's pretty hard for someone online (and none of us are medically trained) to give you advice on this. You would probably need to talk to a specialist doctor who would have much more knowledge. I know one patient who had skin discolouring who saw a dermatologist who was able to help him.
Here's a link to a case which describes one case where a patient on dasatinib has skin pigmentation issues.
Suhas D.S.
They way I look at BCR ABL results.
.018 Means that you have $10,000. (dollars)
and you owe $18.
There are some “not leukemic”, people in surveys that have
BCR-ABL activity in their bone marrow.
The difference is that their BCR ABL, does not
grow or progress. It stays there without treatment.
Natural killer cells keep it under control is one theory.
My skin also lighten up. The only time it bothers me
is when I wear shorts. I look like an Englishman. LoL...
Romo
Hello David
I got my BCR ABL today it says 0.013% but I am feeling bad as my last result was 0.018% I feel I have not progressed much.
Is this normal how much time will i usually take to hit complete remission.Is this a good result just worried on the progress
Regards
Suhas
Suhas,
I'm sure David will reply -
There is ZERO difference between 0.018% and 0.013%. The two measurements are within margin of error of the technology. Two tests done on the same blood sample at the same time can be within one log of each other - a factor of 10. The most that can be said about your latest test result is that you are "detected" for bcr-abl (CML) at a bare minimum level.
Given that you were diagnosed in July 2017 and are now (less than a year) near undetectable is tremendous. Congratulations!
You are already at a point where you will NEVER die from CML. The worst for you is you need to keep taking a drug to keep CML at low residual level. But it is possible that over time, your residual level will fall even further into non-detection and you will be able to test stopping.
One final point - the 'third' decimal place in PCR reporting is meaningless. It's unfortunate that labs continue to report this way.
It does take time, however, for your mind to catch up with your successful treatment. You have another year to go until you believe what I am writing you here is true.
Hi Suhas. This is a good result. Your result is very low and reducing. By Romo's way of thinking above, your "debt" just reduced by 33% from $18 to $12. Anything below 0.01% can occur pretty randomly (if you tested 100 people without CML you would likely get some people with that level). Its only recently results have been reported to more than 2 numbers after the decimal point - 3 years ago you result would have been reported as 0.01%. You are doing well - be happy.
Hi Suhas,
Just by the nature of how the maths work, the reduction of your PCR test result gets slower over time in real-terms. However 0.013% is a fantastic result.
ELNet would class that response as "optimal", and you can't really ask for more than that. In fact, ELNet would give you up to 12 months to achieve anything lower than 0.1% to be have an optimal response, and since your result is about 8 times lower than that it really is as good a result as you could expect. It took me about 3 years to get a result as low as yours, and I am doing very well now at MR4.5 (a deep response).
PCR results rarely show a linear response. Now that your PCR is really quite low, you may see it rise on occasion but this is not usually something to be concerned about. It's normal to get stressed out about this when they do, but it's just part and parcel of getting used to CML.
Here's how I would think of it: if your PCR never reduced any further, you would be absolutely fine and would be able to live a long life. You're doing great.
David.
Suhas,
Congratulations.
Your bcr-abl is < 0.01% (third decimal place is irrelevant). Your result is indistinguishable from PCRU.
In your case, you will not see it stop working. Whatever your Sprycel dose is now, if above 20mg, consider lowering it. It will lessen side effects and may actually be more effective by lessening impact on your other immune system cells (which naturally can fight CML).
Congratulations Suhas!
Great result, but don’t worry about undetectable. Most of us have never got that result, and we’re fine. A really good PCR test will be able to detect a very low number of “bad” cells and give you a very low % figure, but a bad test might not see them and you would be “undetectable”. I know which I’d prefer!
David.
Hi David ...
... and a bad test can give a false positive too!
all that means is when PCR's fall below 0.1% - it's noise.
Thanks a lot for all your help. CML support has made me so confident that I am able to be positive and also helped me to achieve this result.
Thanks again for your response.
Regards
Suhas.