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I just joined the CML community! Q on CHR

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Hi all,

My name is Koralia, I am 33 years old, I live in Greece, and I was "lucky" to join the CML community last May.

During my Dx, I had 32,000 WBC, 12HB, 650 platelets and slightly enlarged spleen (not palpable, but shown slightly enlarged on CT scan).

I didn't have blasts, but I had metamyelocytes.  Bone marrow biopsy showed less than 5% blasts in the bone marrow.

 

I started nilotinib 2x300 on June 1st.

Due to changing doctors, I have had my PCR tests by two different labs during DX, but I only have the results of the first lab, which was 58%.

I am now waiting for my Q-PCR of 3 months from the second lab, which will be accompanied by the corresponding q-PCR during DX as well, which they did on bone marrow sample, but I just don't have those results yet.

I am a bit anxious about my 3-month results, but I'm handling the stress well altogether :) 

 

I have a question on CHR: I reached 10,700 WBC at 20 days after starting nilotinib and reached 5,950 WBC at 40 days. Great response according to my doctors. HB stayed at around 12, platelets went down to 320. 

At two months, I did another test which came back with 7,100 WBC, and another test at 3 months (1 week ago), which came back at 9,290 WBC.

Now that last blood count scared me a bit, however everything is a bit pumped up, my HB is 12.3, my platelets are 375, and the neutrophils/basophils/whatever-else-is-there percentage profile is still getting better. My doctor is not worried at all, and she is rather optimistic that I will get a very good bcr/abl result, and she told me that I can calm down :D

 

Are there cases that you get such a response (5950 WBC), and then lose CHR at such a short time (not that I lost CHR, but just asking)? Has anyone else had a similar experience with mine regarding WBC?

I just want to add that before CML, my usual count was around 8500.

Thanks, and it's nice to join your community :)

Regards,

Koralia

 

Hello Koralia,

I have been diagnosed last May as well and I am on 100mg of Dasatinib.

I think that 9k wbc per microlitre could be considered as normal. During the first couple of months after diagnosis, I was having blood tests every second week. I have seen a lot of times my wbc going from 5.5k to 8.5k per microlitre.

I think you shouldn't worry about that. Wish you all the best on your BCR/ABL results.

Regards,
Labros

Hi Labros,

Thanks for the answer :)

Fingers crossed for the PCR! I wish you all the best too! We have a long journey ahead :)

BRs,

Koralia

By the way, I have one more question about blasts vs other immature cells:

Depending on the lab, I have had different results upon diagnosis:

One lab gave me a count of 12% Metamyelocytes, no blasts, no other immature cell (e.g. Myelocytes or promyelocytes)

A second lab gave me a 0.52 blasts, in a total cound of 36.50k. I guess that means 1.42%? However, there were no indications for myelocytes etc. in the lab results. Speaking with the doctor, she told me that she could see no blasts, but mainly metamyelocytes and occasonal myelocytes. She told me that the automated score of her lab includes these types of cells in the "blasts" number.

A third lab did not give me any percentage for blasts or myelocytes, but the basophils percentage was high, Adding up the different percentage values gave me 100%.

 

What is the norm here? Are metamyelocytes considered as blasts? Because if so, then I guess that my score from the first lab was extremely high?!

Just out of curiocity, when we say that blasts should be over 10% for AP-CML, does this include pro- / meta- and myelocytes?

In any case, no blasts or myelocytes in subsequent tests, and my basophils are back to normal.

Thanks again,

Koralia

Your WBC number is absolutely normal! You shouldn 't be worried at all! Wbc number are not stable they go up and down!wish you the best! I am from Greece too!

Hi Koralia,
I'm Vicky and I'm from Greece too!Diagnosed one year ago with CML. Just wanted to tell you that you shouldn't worry at all!I had a similar experience and my doctor told me not to worry as first the molecular response is lost an then the heamatological.Which means if you have a good PCR result there's no need to worry about WBC fluctuations as these cells are your healthy cells.I hope I have been of some help and I wish you all the best!By the way I am on nilotinib too.
Vicky

Hi Snowman35, Vicky,

Thanks a lot for the support!  :) 

Still waiting for the PCR results here, but I'm optimistic.

By the way, since you are from Greece (although I don't know if this means that you are also IN Greece), do you know any cml group or network?

The only relevant that I know is KEFI, but is there anything else?

 

Regards,

Koralia

I live in Greece but I don't now any group here... If you speak English and as I see you do I don't think that you will find a better one! There members like Scuba and David that have unbelievable knowledge about CML!!

That one I already figured! This forum is THE source of info, and the place to ask all sorts of questions, without hesitating. :-)

Regarding Greece, I was mostly wondering if there was a community for face-to-face communication or voluntary help towards patients, activities etc., but it seems there's not much.

Thanks anyway!

Your welcome!

Regarding Greece, this organisation is the one affiliated with CML Advocates - which is a group where many international CML groups come together.

https://www.anticancerath.gr/

 

Hi David,

Thanks for the info!

 

In the meantime, my PCR just came in! First trimester, and I am already down to 0.32% IS smiley

I guess that's pretty good, right?

 

BRs,

Koralia

Koralia,

You bet that is a good result!.

Hi Koralia!
That's great results!!!!Very nice to hear that!I live as well in Greece,Athens but unfortunately I dont know any other org. apart from kefi as you already mentioned..If anything I will let you know for sure!
All the best!
Vicky

Hi Vicky,

By the way, which doctor are you visiting in Athens? And I guess your PCR is done by ΕΚΠΑ (Dr. Panagiotidis' lab), right?

Regards,

Koralia

Hi Koralia!
Yes correct the lab is at Michalakopoulou 176.My doctor is at Alexandra hospital and his name is Evangelos Terpos.What about you?
Best,
Vicky

Hi Vicky,

I'm in Thessaloniki. My doctor is Eleni Poumpouridou, at St. Loukas Hospital. 

To my knowledge, there are two labs certified in Greece for MR4.5 and IS, one is in ΕΚΠΑ, Athens, the other one is Papanikolaou Hospital, Thessaloniki, but my Hospital is in collaboration with EΚΠΑ, so my samples are sent there as well smiley

Regards,

Koralia

Great!By the way I love Thessaloniki 😊😊My husband is from Thessaloniki and we are visiting once or twice a year!

Let's keep in touch!
Vicky