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BCR-ABL went up at 6 weeks worried

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Hello everyone,

 

I've been lurking here for a few months since I was diagnosed April of this year and I just turned 40 in May... Here is my current situation.

Within 2 weeks of being on Dasatinib 100mg my WBC went from 55k (at diagnosis) to 14k

At 4 weeks on treatment my CBC was nearly normal and my Differential was normal

At 6 weeks (last week) my CBC was very close to normal just indicating that i was very mildy anemic but very close to normal levels, Dr. was not worried. My differential was normal. AT this point they did another qPCR to check BCR-ABL.

My result came back today and at 6 weeks (last week) my qPCR test showed: IS M-BCR-ABL1 - 22.017%

My initial qPCR result from blood taken 4/12 was 21.829%

I started the Dasatinib 100mg on 4/28.

 

I'm very worried because my BCR-ABL IS has actually gone up slightly. I have emails out to both my Drs but wanted to see what everyone here had to say as there seem to be some very knowledgeable people on this forum!

Thanks so much for your help...

 

If I'm remembering correctly,  the PCR test isn't as accurate when you are first diagnosed and are starting treatment.  It becomes more accurate when your response gets into the major molecular response range (0.1% IS).  There is another test called the FISH test that is more accurate at determining early response.  It may be that they don't do that test very often because it might cost more than the PCR test.

It's a little unusual to have another PCR test after only six weeks of treatment.  Your blood counts are most informative at this point and it seems you're doing fine with those.

Did your doc say why they did another PCR so soon after starting treatment?  Also it would be good to ask if they've performed any FISH testing to determine your BCR-ABL level.

Hello Thanks so much for replying.

So I am being treated by 2 Drs right now in the US, one is a well known CML specialist and the other Onc/Hemo who trained with him and is my primary Dr at the moment. Originally the specialist recommended starting 140mg Dasatinib to get a fast initial response since I am young and in good shape and health while the other suggested the standard dose 100mg. I decided together with my primary treating Dr at the moment to start 100mg and then re-evaluate at 6 weeks.

I am very analytical and always want to know to know the statistics, and what the research says. My Dr. noticed how this about my personality and told me that while 3mo is the standard if I really wanted we could do a 6 week test and discuss. Being the way that I am I want to test as much as possible...

Anyway that explains the  6 week PCR. I'm not sure if they did a FISH test but I will ask about that. 

Thanks again for replying...

No_Fun_2022, untreated, CML PCR readings can double week-to-week.  In that you tested on 04/12 but didn't begin your TKI until 04/28, we don't have any idea as to what your CML PCR reading might have been on 04/28.  Best wait until your 07/28 quarterly test before attempting to assess your CML status.  More frequent testing can lead to more confusion.

Buzz.  

Hi Buzz,

I was wondering about that gap 4-12 to 4-28. Thank you for this information this makes me feel at least a little bit better. Everything is very new to me and its hard for me to not let anxiety take over at any little blip. Thanks again...

Hi No_Fun_2022,

I completely understand where you are coming from. I was diagnosed with CML a year and a half ago at age 37. To say I was anxious and beside myself is an understatement. I too went to different doctors and insisted upon more testing and regular labs. Anyway, I agree with Buzz begin that there was that 2 week gap before you started taking the meds it is possible that your levels became higher. I did not start my meds right away as I sought a second and third opinions but distinctly remember that my levels did rise slightly during that time. I know hearing you have CML is a lot to take in but just continue to ask questions, look into support groups or  forums such as this one. I took advantage of everything I can find. It really helped. Hopefully your next blood work gives you some reassurance :) 

Don’t worry you have a lot of other meds to back you up and it’s way to early to tell if the drug is working or not. Exhaust every bit of Dasatinib before even think of switching. You have imatinib, nilotinib, ponatinib, and that new one acsininamb. I just switched from imatinib to nilotinib after 11 years. Ya it sucks sometime but try not to let the stress overwhelm you. This cancer has a tendency to screw with the mind, body, and soul. And you may be very analytical but CML and it’s treatment is affected by a whole host of variables including diet, weight, stress, environment, exercise, and your mind just to mention a few. Try to get rid of all the bad habits you have, live simple and stay away from junk food. And above all don’t worry.

Thanks everyone for the replies and input. The reason I'm a  bit worried is I have read a couple of studies now indicating that the faster we get BCR-ABL down the better the outcomes (better long term prognosis and higher chance of TFR) and in general it seems important to hit the under 10% at 3 month milestone. I'm also concerned because it seems failing a 2nd generation TKI used as a first line treatment is an indicator of a higher risk situation. 

My doctors of course don't want to change anything before the 3 months mark in case everything ends up looking good by then which makes sense. The only thing we are considering for now is upping the dose to 140mg. 

I guess there's nothing to do besides continue to take my meds every day and try my best to not stress myself out too much about things until then. Hopefully I'll have some good news to report back in a few weeks.

No_Fun, (you got that right!) I was diagnosed in 2009 and I'm still kicking even though I didn't hit even a single milestone. Slow and steady wins the race just as easily as jack rabbit quick. I first started on imatinib and after 9 mos. I developed severe liver toxicity. I had to take an immediate break for several weeks. I started dasatinib at 100 mg. and all went well for 2.5 years when I developed an effusion. Off the meds again for about 9 weeks to let the effusion resolve. I lost MMR. Restarted 50mg Sprycel and regained MMR in 15 mos. and reached CMR in 2016. 6 years after starting reduced dose I developed a 2nd effusion and after messing around with that, including 25 mg. every day during which I stayed at CMR. In 2021 I started nilotinib 150mg. twice a day. I'm maintaining CMR. I'm planning on reducing again this year to 150gm once per day.

Your body is only going to react to these drugs the way it can and that's probably different for all of us. Having physicians set milestones isn't going to scare your body into reacting faster. smiley Stay the course and do what you have control over. Take your meds as directed and enjoy your life. Good luck!

 

Hi,

its such a small difference that I wouldn’t worry too much about, it can depend on how many cells were tested and many other factors…  Firstly, the tki’s are working as they got your blood levels in the right place, most Dr carry out test every 3 months, 6 weeks seems a bit fast.

From what it looks like your in the chronic phase, so no idea why would the other dr recommend 140mg ?:o starting on a second gen tki is a good idea to get a fast response, but 140mg seems very odd.

Do you know whats your blasts %? 

There are many patients that don’t hit their milestone targets but are doing great or patients who miss their 3,6 month milestones but hit the 9th or 12th. Everyone reacts differently to the treatment .  Be happy with your progress as the first step is to stabilise the blood counts which looks like your on the right track and leave worrying about the pcr results for a later stage. 

If I am understanding your post correctly you have been on TKI for about six weeks.  It is worth waiting a month or two to see if you get it moving downwards.  I was too started on 100mg Dasatinib and was at 23% after three months.  That caused a lot of concern for me but my six month test was 1.9%.  That was almost five years ago.  I am no longer on Dasatinib (switched to Nilotinib for a better response at approximately 18 months).  At this point I would wait for your next test and see how you are doing.

My blast was 0.5% at diagnosis when checked during the bone marrow biopsy. In the peripheral blood I don't think they found any..

I just asked to do a PCR at 6 weeks because I wanted to get an idea of where I was at and I just like data in general, the more the better. For some things I guess it can possibly confuse things but that's just the way I am. 

 

 

Thats good news, means you were detected very early. Again, dont worry about the latest bcr result, wait for the 3 month check up and then see how it goes.

Do you know what your Vitamin D levels were at diagnosis? or whether they even checked it