Understanding CML: Expert Videos for Patients

iCMLf Publicaions.

iCMLf Forum 2022: The Next Big Challenges in CML? Webstreams

iCMLf publications: A selection of interesting articles on CML from peer-reviewed journals

You are here

Forum

VickyK. on 4 October 2019

Category: Blood tests

Replies: 2

Last updated: 5 October 2019

PCR Result after one year
by VickyK. (Oct 5)

Thank you very much Koralia!

by koralia.pappi (Oct 5)

Great results Vicky! Congratulations!

by VickyK. (Oct 4)

Hi all!

I am so happy today and just wanted to share with you that after one year on nilotinib I went down to MR4.5!I send all my good energy to all of you!

Best

Vicky
Category: Blood tests

Replies: 2

Last updated: 5 October 2019
rsgiles on 24 September 2019

Category: Blood tests

Replies: 12

Last updated: 26 September 2019

Rising PCR test
by rsgiles (Sep 26)

Ok thank you so much. My doctor that I’ve had from the beginning in 1998 retired. I still speak to him and take him out fishing once in a while and it has been years since he retired. He

by kat73 (Sep 26)

I think you're probably all right. (One thing you can count on is that there is no significant difference between the 14 and the 26.) The worry comes in as to trend, but probably

by rsgiles (Sep 26)

I am still taking gleevec and I don’t think the test changed. The only thing I did notice was that it only had the number for the international scale and that was 0.0026%. The test before this

by AlastairC (Sep 26)

Good call Kat - I've seen a number of these type of posts over the years when a lab has a new more sensitive test system and results appear to be increasing, but it is just the shiny new kit
Category: Blood tests

Replies: 12

Last updated: 26 September 2019
thomas.c on 23 September 2019

Category: Blood tests

Replies: 2

Last updated: 23 September 2019

1.3 log increase on dasatinib after mr4.5
by Felix (Sep 23)

Hi Thomas, you had an infection that could do it .I have had an infection twice ,an infected insect bite and a scratch on my ankle from a bramble.I left them for a few days to see if they would get

by AlastairC (Sep 23)

Hi Thomas, there are a few posts a year like yours where PCR results seem to take a big jump. Many of them prove to be an anomaly in the test process and the next result goes back to the previous

by thomas.c (Sep 23)

Hello everyone,
I was hoping to ask for your opinion... i am 33 yo, and have been undergoing treatment with 100mg dasatinib for the past 2 years. My cml was noticed quite early. Everything went
Category: Blood tests

Replies: 2

Last updated: 23 September 2019
Felix on 19 September 2019

Category: Blood tests

Replies: 5

Last updated: 21 September 2019

Can any one help with this please
by Snowman35 (Sep 21)

had happened to me exactly the same thing! There is absolutely no reason to worry about!! For some reason your blood didn t stored properly so they couldn t do pcr... Nothing to worry about!

by Felix (Sep 19)

Haha David ,my words exactly and a few more expletives.This is happening at a hospital which is supposed to be excellent with experts and not my local one ,very annoying .

by David Fitz (Sep 19)

All it means is that the lab testing process fucked up. That's it. Seems it's not the first time!
As you say, the bit of anxiety this can cause is that you go a bit longer between test

by Felix (Sep 19)

Hi David ,thank you so much for your explanation ,a lot of it has gone over my head,as I never get much information from my Doc , but you have sort of put my mind at rest .This test was done at the
Category: Blood tests

Replies: 5

Last updated: 21 September 2019
Chuckster on 12 September 2019

Category: Blood tests

Replies: 1

Last updated: 13 September 2019

FISH Test Results.
by scuba (Sep 13)

No surprise.
Good news.

by Chuckster (Sep 12)

Fish Results: 1.5%
Down 1 % from 2.5% on July 19th.
Just came back from my Oncologist appt.
Staying on 20 MG of sprycel for another cycle ( 60 Days) as she is ok with this as its a downward
Category: Blood tests

Replies: 1

Last updated: 13 September 2019
jane heather ne... on 3 September 2019

Category: Blood tests

Replies: 10

Last updated: 11 September 2019

Imatinib 400mg disappointing response
by jane heather newberry (Sep 11)

Thankyou all for taking the time to reply. Hopefully i will see a better result next time. Best wishes to you all. Jane

by AlastairC (Sep 4)

yes sorry, blasts at 0 is good!

by scuba (Sep 4)

Blasts at zero at your early stage is excellent. It suggests Imatinib is likely doing its job and as several people wrote above, many so-called "slow" responders do just fine and end up

by kat73 (Sep 4)

Think you meant, "glad to see your blasts ARE at zero"?
Category: Blood tests

Replies: 10

Last updated: 11 September 2019
Chuckster on 5 September 2019

Category: Blood tests

Replies: 4

Last updated: 8 September 2019

Latest Blood Test Results BCR/ABL1 .
by Chuckster (Sep 8)

Thank You Sarah!

Chuck.

by Sarah63 (Sep 8)

Bravo! It really seems the 20mg is working quite well.

by Chuckster (Sep 5)

Thanks David!
All tests are blood including the FISH.
Had 1 bone marrow/bone extraction and thats more than enough for that test under local anesthesia thank you very much! LOL!
Should get

by David Fitz (Sep 5)

Hey Chuck - that’s a great result in that timeframe. Looks like that 20mg dose might suit you well!
Don’t get hung up about non detectable. All you’re looking for is a nice sloping
Category: Blood tests

Replies: 4

Last updated: 8 September 2019
Chuckster on 30 August 2019

Category: Blood tests

Replies: 2

Last updated: 30 August 2019

Blood Test
by Chuckster (Aug 30)

Thanks Scuba!

by scuba (Aug 30)

Look forward to seeing your results. I am optimistic for you!

by Chuckster (Aug 30)

Just had blood drawn this morning from LAB CORP.
Four tests: WBC .CMP, FISH(IS) and ABL/BCR Quantatative PCR etc..
Will post results in the next week or so when they come in.
Category: Blood tests

Replies: 2

Last updated: 30 August 2019
Chuckster on 25 July 2019

Category: Blood tests

Replies: 0

Last updated: 25 July 2019

New blood Test Results: What does this mean?
by Chuckster (Jul 25)

Switched labs from Quest Diag. to Lab Corp:
Last 3 results from Quest were all 0.000 not detected both on FISH and BCR/ABL1 etc.
Now these new results from Lab Corp:
b2 a2 IS %: 1.146
b3
Category: Blood tests

Replies: 0

Last updated: 25 July 2019
Koncho tsering on 15 July 2019

Category: Blood tests

Replies: 17

Last updated: 23 July 2019

My father diagnosed with CML
by Koncho tsering (Jul 23)

My doctor said if the haemoglobin falls further next week then we'll need to do a blood transfusion in order to increase the level of haemoglobin in blood. However I don't know how long the hgb in

by Koncho tsering (Jul 23)

My doctor said if the haemoglobin falls further next week then we'll need to do a blood transfusion in order to increase the level of haemoglobin in blood. However I don't know how long the hgb in

by scuba (Jul 22)

If he takes Veenat with food (bread / oatmeal), he will likely not have any nausea.
I took Gleevec back in the day in the middle of a meal, not at the beginning or end.

by Gian P (Jul 22)

My doctor says that is the drug that cause the hgb to go down and that causes fatigue etc, she insists that food won’t do much, but i try eating enriched Iron food as often as i can, and
Category: Blood tests

Replies: 17

Last updated: 23 July 2019
Gian P on 18 July 2019

Category: Blood tests

Replies: 4

Last updated: 19 July 2019

1 year Anniversary and my BCR ABLE not undetectable yet
by Gian P (Jul 19)

Thank you again,
i will make sure to talk to her about these other TKI drugs and see where it takes me.
thank you.

by ColoradoGuy (Jul 19)

Correction 10% is early molecular response not PCyR. I switched from dasatinib because I could not reach 0.1 and then went up to 1.2. It is trending back down on Tasigna thank God (0.36 last

by Gian P (Jul 19)

Thank you,
my Onc is not as worry as i am, but today i told her and she insists on keep doing CBC weekly and CBR abl monthly to monitor any changes, she mentioned a possible Bone Marrow transplant

by ColoradoGuy (Jul 19)

I don't know your history regarding mutation testing and other TKIs but I would imagine that changing TKI would be in order more importantly than changing doctor. I think going above 10 is defined
Category: Blood tests

Replies: 4

Last updated: 19 July 2019
Justine on 12 July 2019

Category: Blood tests

Replies: 4

Last updated: 13 July 2019

Latest PCR test results - do low blood counts persist indefinitely?
by Justine (Jul 13)

Thanks, good to know, appreciate that! Take good care.

by Justine (Jul 13)

Thanks, appreciate the reassurance. It's great that Sprycel has worked so well for you!

by Rick B (Jul 13)

I have counts like you. My doc says that it is a new normal for me and to not fret. Congrats on your bcr-abl score. Nice.

by Rick B (Jul 13)

I have counts like you. My doc says that it is a new normal for me and to not fret. Congrats on your bcr-abl score. Nice.
Category: Blood tests

Replies: 4

Last updated: 13 July 2019
gbatalha on 16 April 2019

Category: Blood tests

Replies: 13

Last updated: 12 July 2019

bcr-abl 12 months
by David Fitz (Jul 12)

Congrats! Enjoy the vino!!
David.

by AlastairC (Jul 12)

Enjoy the sardines and the wine!

by gbatalha (Jul 12)

Alastair, Job and David,
You were all right.
I just received the 15-month bcr-abl and the value is 0,059%. So, with a 3 month delay I was able to reach the MMR holy grail!!
Just

by David Fitz (Apr 24)

If I squint really hard, I can kind of see her point. 2.2% after 4 months is fab - you want to be under 10% at 3 months. So not to get to 0.1% at 12 months could be viewed as disappointing in that
Category: Blood tests

Replies: 13

Last updated: 12 July 2019
lupus on 1 July 2019

Category: Blood tests

Replies: 3

Last updated: 8 July 2019

Myeloblasts aberrantly express CD7 mark meaning?
by RC Kirk (Jul 8)

I thought I'd post the response Tomas got on the LLS CML group in case anyone else was interested.
https://communityview.lls.org/statuses/6302
"You only know that because a Flow Cytometry

by lupus (Jul 7)

Hi Kirk,
thanks for your answer and support. Thanks also for that link, I´ll appreciate it and will definitely ask there.
I am worried because I have read some papers (there are only few in

by RC Kirk (Jul 3)

Hi Tomas,
I doubt that it means anything about your prognosis. Our blood is usually pretty messed up when we're diagnosed. Hopefully you'll have a good response with Tasigna and

by lupus (Jul 1)

Hello everybody,
I have been diagnosed three weeks ago with early CP of CML and I am currently on Tasigna 300 mg/day for a week.

Can somebody please help me to understand what is the meaning
Category: Blood tests

Replies: 3

Last updated: 8 July 2019
ColoradoGuy on 26 June 2019

Category: Blood tests

Replies: 0

Last updated: 26 June 2019

21 Month PCR Update Sprycel to Nilotinib
by ColoradoGuy (Jun 26)

I wanted to update everybody on my PCR results after switching from Dasatinib to Nilotinib. I can no longer log on using my Google account for some reason so there are other threads under my
Category: Blood tests

Replies: 0

Last updated: 26 June 2019
Aroura111 on 22 May 2019

Category: Blood tests

Replies: 12

Last updated: 25 May 2019

Anyone have a PCR result above 100% at diagnosis?
by Sarah63 (May 25)

Scuba,
This is of very high interest to me: (quoting you):
“ Random testing of healthy people showed 10% had bcr-abl detected (i.e. 0.01%) p210 clone with no disease...”
“...

by scuba (May 24)

Know that the "7" is a likely place holder and not a real number. PCR values below 0.01 are noise at best. It is indistinguishable from PCRU ("undetected"). Labs will often put

by RC Kirk (May 24)

I received my latest PCR score last week and it was .007% IS. I've been alternating 20mg Sprycel with imatinib for the last year or so. I think I'll take 250mg imatinib for the

by scuba (May 24)

RCKirk:
This is your diagnosis status:
"Yes, my PCR score was above 100%.
PCR - p210 transcript 118.7% IS
FISH - 93%
cytogenetics - t(9;22) translocation in all 20 of the metaphases examined
Category: Blood tests

Replies: 12

Last updated: 25 May 2019
MartinZA on 22 May 2019

Category: Blood tests

Replies: 0

Last updated: 22 May 2019

Rouleaux in blood
by MartinZA (May 22)

Hi everyone
It's been a long time since I've posted last and, despite complications, my CML is well controlled with my latest PCR test showing 0.033% and MMR on 400mg imatinib. However
Category: Blood tests

Replies: 0

Last updated: 22 May 2019
Gian P on 16 May 2019

Category: Blood tests

Replies: 4

Last updated: 17 May 2019

BCR-ABL RESULTS ARE IN...
by Gian P (May 17)

Kirk,
You are right! I looked into my history and the Gleevec was 400 mg tablet.
sorry for the misinformations, my doctor plan is to increase the Sprycel after the two weeks if the BCR hasn’t

by RC Kirk (May 17)

I'm surprised that when you started treatment you were taking 100mg Gleevec. I've never heard of anyone being started on such a low dose of imatinib.
Has your doctor said what the next

by Gian P (May 17)

Thank you for your reply Kirk,
july 2018 i was diagnosed, and i started Gleevec 100mg. My platelets dropped so i changed to Sprycel 100 mg, my platelets dropped and again Sprycel 80mg, then 60 mg

by RC Kirk (May 17)

https://www.cmlsupport.org.uk/thread/12967/platelets-level-low

Hi Gian,
In your previous post you wrote "I was on Gleevec 100 mg at first". Did you mean 100 mg/day or instead
Category: Blood tests

Replies: 4

Last updated: 17 May 2019
saifur360 on 27 April 2019

Category: Blood tests

Replies: 2

Last updated: 8 May 2019

For low Hemoglobin
by Amit (May 8)

Try this product called Forever Greens from a company called Forever Living. Its worked miracles for my hemoglobin as well as a lot of other people I know. It's a white bottle with green fonts.

by sorin real (Apr 28)

I had spectacular results in just 4-5 days with the following:

- red beet juice

- wheatgrass juice

You can take them on the empty stomach a couple of times a day.

The taste

by saifur360 (Apr 27)

Last September 2018 my RQ-PCR was 0.033
4 April 2019 my hematologist told me that, next RQ-PCR will give September 2019 & suggested have to continue imatinib (veenat 400 mg). But last one
Category: Blood tests

Replies: 2

Last updated: 8 May 2019
Phuong Phuong on 2 May 2019

Category: Blood tests

Replies: 4

Last updated: 3 May 2019

Should i be worried???
by Phuong Phuong (May 3)

That is really helpful. Thank you David!

by David Fitz (May 2)

Here's our page on blood counts, and normal ranges. There's a table outlining the expected ranges for each cell type.
https://www.cmlsupport.org.uk/section/normal-blood-counts

by Phuong Phuong (May 2)

Thanks AlastairC
the bone marrow report shows that the cells are very very poor (including red blood cell type, WBC type, platelets type) and no blast.
Is this related to aplastic anemia? Has any

by AlastairC (May 2)

Don't worry about the PCR. The difference between undetected and 0.017% is completely unimportant, and more to do with the repeatability of the test process than your blood. I can't
Category: Blood tests

Replies: 4

Last updated: 3 May 2019