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Test result / stick with Imatinib?

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I just received my 3 month qPCR test result. It shows a BCR-ABL level of 12.7%.

Also, my blood values are a bit low: Thrombocytes at 98 (should be 145-348), Neutrofilia at 1.5 (should be 1.7-8.0), total white (LPK) at 3.2 (should be 3.5-8.8). Hemaglobin is ok at 140.

I started on Imatinib 26/1. Test was made exactly three months later on 26/4. I had a break for two weeks in the beginning because my Throbosytes crasched down to 22 (now stable around 100).

My doctor wants me to continue with imatinib for the time being. Although as I understand it the qPCR by now should be < 10%.

Is 12.7 % BCR-ABL ”close enough”? Or should I demand to get a second generation TKI? Any reason to worry about the low Thrombocytes?

You're fine.  Very typical picture.  Yes, keep on the imatinib.  Many, many, MANY people here don't quite hit the ideal marks on perfect time, but the trend is the important thing and generally the milestones get reached.  Having the thrombocytes around 90-100 is fine.  (Your doc was right to stop the drug because of 22, however.)  All these counts should slowly come up over the next months - sometimes it even takes a couple of years - but most people wind up in the normal or almost normal ranges.  One thing the Internet doesn't tell you, but a live doctor will if you ask, is that nobody in the medical world gets their shorts in a knot on these until such time as they are like a gazillion times lower (or higher, depending).  Whereas, we patients tend to get very worried over anything in boldface on our lab reports.

I'll bet your next PCR at 6 months will be terrific.  If not, then will be a time to discuss 2nd generation TKIs.  In the meantime, I hope your other numbers behave.  (But if you stayed right where you are on those, you're fine.)

 

 

Stay the course, as long as you continue dropping that is good, if after one year you don't reach MMR you might look at changing meds but as long as your tests show progress, I would just stick with Imatinib.  

Hi, I'd agree about sticking with the imatinib, particularly if you are doing OK with side effects. If the trend continues successively downwards you're fine. I missed targets at 6 & 12 months but have now been below 0.01% for over 10 years, and am reducing my imatinib dose. .

Ok thanks, it sounds like it’s not so bad.

Yes, I’m feeling quite good, with almost no sideeffects. Blood values have been more or less the same for a month now, very little change.

Ok, will relax a bit and let time (and imatinib) take its turn.

Unfortunately I recently learned they screwed up my 3 month FISH-test. First I was told results were delayed, then that the sample quality was too low. I’m guessing the sample got too old or something.

They said that since 3 month PCR test was ok we will wait another month and then take the 6-month bone marrow FISH-test as originaly planned.

The thrombocytes drop to 22 I think may have been sensitivity to Hydrea and/or they left me on it for too long. There was a period of two weeks without any bloodtests in the plan, so when I finally took the test, blood values had dropped too low. I had to stop Hydrea immediately and paus Imatinib for two weeks. Last thrombocyte count was 102 so a bit low but not alarming.

My original PCR test was 114%.

I suspect (and hope) that at 6 months the FISH test may be ineffective - the BCR-ABL at 6 months is the important one. As long as you have a good reduction from 12.7% at 3 months you are doing fine. Remember FISH involves looking at 50-200 cells. If you are down the a BCR-ABL of perhaps around 5% or less, and the sample is say 100 cells, it is possible/likely they would see very few cells fluorescing.

I should also add that white cell count being low has been my life for 30 years + (e.g. 20 years before my CML Dx.) I now run at full WBC around 2.2, and neutrophils get to 1 on a good day.

Got some strange test results today. I’ve done blood tests every two weeks since I resumed Imatinib from my break in early March. I was quite happy, even if some values were a bit low they have been stable since then and even improved a bit.

My neutrofila has varied between 1.1-1.9 (generally the higher values lately). 

Today suddenly they drop down from 1.7 two weeks ago to 0.4 now?? (Thrombocytes 102->86, Hb 139->131, LPK 3.4->2.1).

Thrombocytes used to be the problem, not so much neutrofila.

Doctor left me a message to simply take a 1 week break from Imatinib, then a new blood test after that, and... nothing more.  

I was supposed to do 6 month PCR the 23rd. Not sure what conclusions can be made from that test if I take a week’s break now?

They did a ”mutation analysis” at 3 month test, but it showed no T315I. But as said I got no result from FISH then. 

I did switch from Stada to Teva three weeks ago, but it can’t be that, right?

Anyone with experience in this? Should I just sit tight?

My only question is are you feeling OK? My neutrophils get low when I have had an infection as I can't respond which is why I carry some broad spectrum antibiotics in case I get an infection. That could be a reason for your low neutrophils, Other than that not sure I can help. 

Well both my wife and 1.5 y/o have a cold. Me not so much but I’ve had a bit of soar throat. Maybe also a bit tired but I think it’s because the child doesn’t sleep so good having coughs etc. I don’t know if that could have such impact? 

I doubt that the colds etc. in your family would explain the drop in neutrophils. I guess do what the doctor suggests and see what happens with the blood test in a week's time.

Alastair, 

Transient, post-viral neutropenia is pretty common.

Here's a decent paper which discusses some of this. It doesn't go into great detail, but does state that viral load can cause a drop in neutrophils.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1070837/

A couple of times when I've had my neutrophil count around or below 1, my doctor has asked if I've been sniffly or had a cold and both times the answer was yes, I had indeed had a bit of an infection.

David.

Thanks David, that is news to me. It will be interesting to see if Poppert's levels have improved, but we won't know if it is the week off imatinib or an impact of the viral infection.

Blood values are back to normal (more or less) after a week’s Imatinib break. Hb 134, Lpk 3.9, thrombocytes 124 (best ever) and neutrophils 1.5. So back on Imatinib now.

Strange dip last week. Doc thinks I may be a bit sensitive to Imatinib, but that that is not necessarily a bad thing. We’ll know for sure after the 6 month tests at the end of the month.

We’ll see what happens now. If it’s the same pattern as last break then values will continue to improve a bit more the coming week, then they may fall a little the week after.

I had my 6 month appointment with the doctor today. I’m writing here what was said in case anyone finds it interesting in the future.

Amongst other things she said it was good that my blood values bounced back quickly from the 1 week Imatinib break. It’s almost certain that my bone marrow is simply just a bit sensitive, nothing more.

If blood values (thrombocytes in particular) had not gone up quickly then that may have been a warning sign (which may have lead to considering another TKI).

She said it’s hard to tell if I will need more breaks in the future or if it will stabilize now. But if I continue to need breaks reguarly then we may switch to other TKI. Nothing bad with that, it’s just that with Imatinib you cannot reduce the dose, with other TKI’s you can and you can customise the dose if marrow is sensitive. For now I will remain on Imatinib but I will leave blood samples every two weeks.