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JacqJohn on 10 January 2018

Category: Blood tests

Replies: 2

Last updated: 19 January 2018

Low WBC and sensitivity to TKIs
by AlastairC (Jan 19)

Hi John. Low WBC on imatinib has been my experience since I was diagnosed in 2007.
I always had low wbc, first investigated in the 1980s when I had a testicular cancer. (it is likely that the

by sandy craine (Jan 14)

Hi John,
your overall white cell count is lower than the normal ref count but given you are being treated with TKI therapy (and so recently diagnosed) your white cell count will be lower than

by JacqJohn (Jan 10)

Hi all,
ive been diagnosed with CML back in Sept 2017. Was first put on hydroxyurea then started on Nilotinib. However after a week into Nilotinib, my liver function test went up very high
Category: Blood tests

Replies: 2

Last updated: 19 January 2018
Carolinemb on 17 January 2018

Category: Blood tests

Replies: 2

Last updated: 17 January 2018

PCR / BCR
by Carolinemb (Jan 17)

Thank you for taking the time to explain this..

by David Fitz (Jan 17)

Hi Caroline,
Welcome to the forum.
This is one of those occasions where people get confused, and you regularly see them mixing up their terminology. But you have found the right place to get the

by Carolinemb (Jan 17)

Hi,
i am newly diagnosed this week & trying to understand everything. Could anyone explain if a BCR test is the same thing as a PCR test? And what is the difference between BCR & what PCR
Category: Blood tests

Replies: 2

Last updated: 17 January 2018
rsgiles on 2 January 2018

Category: Blood tests

Replies: 10

Last updated: 5 January 2018

PCR test
by Justine (Jan 5)

Ellie a big thanks to you, too (please see my response to David; same to you).

by Justine (Jan 5)

David, I just want to thank you for that very smart, kind, reassuring and helpful reply. After 9 months since diagnosis I am still constantly perplexed by it. Your statement clarifies a great deal.

by Ellie Regina Grey (Jan 5)

Hello,
I concur with what David has put down regarding the term "undetectable" to translate a PCR test result.
To me, the word "undetectable" has a close link with the word ""impossible" in my

by David Fitz (Jan 4)

Hi,
0.004% means four in one hundred thousand. 0.0092% means ninety-two in a million (nine and a bit in a hundred thousand). If one is IS and the other is not IS (international standard) it
Category: Blood tests

Replies: 10

Last updated: 5 January 2018
HelenS on 30 November 2017

Category: Blood tests

Replies: 3

Last updated: 21 December 2017

BCR-Abl level up
by T and M (Dec 21)

Hi Helen. I hope this finds you more settled with what you are facing. My husband has been on Imatinib for 2 and 1/2 months now. He started at 89.7%, went to 34.43% and the last

by EvaH (Dec 4)

Hey there
Sorry you are feeling stressed by the numbers, however do remember, at some point they are just numbers...indicators! The important thing is how you FEEL physically and if you can get on

by Olivia (Dec 1)

I can understand your concern, Helen.
It may be that your second "miraculous" result was less than accurate, as this sometimes happens and the other two results show a reasonable decline.

by HelenS (Nov 30)

I was diagnosed in January this year. My BCR-ABL at diagnosis was 18.9%.
At 3 months on Imatinib it was 12.6%.
At 6 months 0.045% which my consultant said was a miraculous result.
Then
Category: Blood tests

Replies: 3

Last updated: 21 December 2017
rosegrace on 20 November 2017

Category: Blood tests

Replies: 1

Last updated: 21 November 2017

One year After CML
by David Fitz (Nov 21)

Hi -
400mg is the usual starting dose of imatinib. After 3 months, the goal is about 10% but people should not get too hung up on the exact number.
2.7% after 6 months is pretty good. A lot

by rosegrace (Nov 20)

I have been taking Imatinib (Veenat) for a year. I started with 300mg and my PCR test at 6 months was 15%(IS). So my doctor increased my mg to 400mg and after another 6 months I'm just down to 2.7
Category: Blood tests

Replies: 1

Last updated: 21 November 2017
ColoradoGuy on 17 November 2017

Category: Blood tests

Replies: 2

Last updated: 21 November 2017

Low WBC?
by Tbrand (Nov 21)

Hello Colorado Guy, I’m from there also. Anyhow, 30 days after diagnosis, on Gleevec, my WBC count went from 94,000 to 1000. It stayed low for about 3 months and I was put on an antibiotic during

by David Fitz (Nov 17)

Hi there, and welcome!
Dasatinib can be myelosuppressive which means it can decrease bone marrow activity a bit, resulting in fewer red blood cells, white blood cells, and platelets.
I too

by ColoradoGuy (Nov 17)

Hello all and thank you for all of your posts and information that is available on this site. I wad diagnosed three months ago with a WBC of 258 (age 37). I am taking Dasatinib 100mg and
Category: Blood tests

Replies: 2

Last updated: 21 November 2017
CarrieF on 31 July 2016

Category: Blood tests

Replies: 4

Last updated: 5 October 2017

Blood work results that prompted investigation
by stashhunter43 (Oct 5)

Hi, I have an appt with my general doctor tomorrow and have been researching my blood test results. My platelets were high 540, up from 425 from a blood test 2+ years ago. This time my

by David Fitz (Jul 31)

Carrie,
Though high white cell and neutrophil counts are a CML marker, that's not the only reason you would see them elevated. A routine bacterial infection would also see elevated levels of

by CarrieF (Jul 31)

Hi David

Thank you for replying. I am being treated for an autoimmune disease so I have lots of routine blood work.

Over the last 4 months my platelets and WBC count has been rising and

by David Fitz (Jul 31)

Hi Carrie,
Almost always, it's an elevated white blood cell count (neutrophils, particularly) is the marker than is seen in blood that causes further investigation, leading to a CML diagnosis.
Category: Blood tests

Replies: 4

Last updated: 5 October 2017
Kym on 27 August 2017

Category: Blood tests

Replies: 6

Last updated: 21 September 2017

New to cml could do with advice please
by Kathyp (Sep 21)

Hi, I was diagnosed back in 2003 and it took me along time to come to terms with it and I to had a slow response to glivec , I was put on 600 mg and that has worked its magic . Hope you are ok too I

by Justine (Sep 3)

Hi Kym, I was diagnosed in April. I think denial is a perfectly appropriate response to this disease! As lucky as we are, that this once-fatal disease is now manageable, it is a strange in-between

by johnw1001 (Sep 2)

Hello Kym,
I will not add to what other members of this forum have contributed but perhaps would wish to comment on the issues of "coping" and "support" when diagnosed with a condition like CML.A

by EvaH (Aug 30)

I agree with David. I was 41 at diagnosis last year, my 3 month results were "sub optimal" but my 6 month results were fine and I achieved undectectable very fast (10 months).
There are about 5
Category: Blood tests

Replies: 6

Last updated: 21 September 2017
johnw1001 on 1 September 2017

Category: Blood tests

Replies: 1

Last updated: 3 September 2017

The meaning of an undetectable PCR
by David Fitz (Sep 3)

Hi John,
My understanding is that MR5 is at about the dependable limits of current advanced kit. An old PCR machine in a lab might find a result "undetectable" which a modern one might find is only

by johnw1001 (Sep 1)

All,
I am keen to find out if anyone has explored the meaning of a PCR of undetectable .
August 2016 my PCR was 0.266 and the latest dated 2017 is 0.000 undetectable ;that is after
Category: Blood tests

Replies: 1

Last updated: 3 September 2017
nurserachel on 31 July 2017

Category: Blood tests

Replies: 4

Last updated: 1 August 2017

BCR-ABL results inconclusive
by nurserachel (Aug 1)

Hi, yes I guess how people work it out. Per microliter mine at the moment works out at 24,000. Planning on seeing the haematologist and then hope my results don't take too long now. Thanks for

by AlastairC (Aug 1)

Hi Rachel. Most CML cases I've been aware of show an increase in WBC very quickly. MY WBC had been very low (around 2) for more than 15 years pre diagnosis. I moved home, changed doctors and the new

by nurserachel (Aug 1)

Yes it is an odd one really. My WBC varies with no apparent reason for change, varies from 14 up to around 23 with no obvious infection. In addition to this I have high inflammatory markers such as

by AlastairC (Aug 1)

Hi Rachel, its a little tricky to know where to start on this, but a few thoughts. What level is your high WBC? If it is high and stable my understanding would be that CML is unlikely - most of the
Category: Blood tests

Replies: 4

Last updated: 1 August 2017
annie t on 21 July 2017

Category: Blood tests

Replies: 4

Last updated: 30 July 2017

BCR-ABL
by annie t (Jul 30)

Hi Sandy,
I met with my main doctor and he mentioned that the lab has upgraded to IS scale and not to worry about my current percentage.
Regards
Annie

by sandy craine (Jul 29)

Hi Annie,
yes 3 months to wait for another PCR does seem a long time. Could you persuade your doctor that you are concerned and would like another PCR test now?
Sandy

by annie t (Jul 22)

Thanks Sandy for the response. Actually there is no change in the lab. Also rather last 3 were negative and since it is now .01 now I am more worried. Doctor did mention to have a test done after 3

by sandy craine (Jul 22)

Annie, don't worry as your BCR-Abl ratio are still pretty low. This change is from one test so could be an anomaly. Has anything changed such as the lab that did this latest test as opposed to the
Category: Blood tests

Replies: 4

Last updated: 30 July 2017
Daphne Lynn on 7 April 2017

Category: Blood tests

Replies: 10

Last updated: 29 July 2017

Conversion levels
by sandy craine (Jul 29)

HI Daphne,
If you already have cardiac issues then maybe nilotinib would be contraindicated? Please ask your clinician.
Sandy

by chrissie (Jul 26)

Hi Daphne
Sorry to be late in answering but I only just went onto this site. By now I guess you've had the clinic appt and made a decision regarding Dasatinib or Nilotinib. Both seem to have very

by Daphne Lynn (Jul 24)

Three months on and I'm picking up an old thread to avoid retelling my whole story...
...Moving on I have now been taking Imatinib since December and actually feeling very well - I really didn't

by chrissie (Apr 12)

Good news, Daphne. It does help to have confidence in your haem and I have found them to be excellent. Take his advice and have a good summer. It's the downward trend which is the most important
Category: Blood tests

Replies: 10

Last updated: 29 July 2017
rholtslander on 10 July 2017

Category: Blood tests

Replies: 5

Last updated: 15 July 2017

I am having difficulty understanding my PCR results.
by rholtslander (Jul 15)

Thanks. It didn't make sense to me and I had speculated whether it was a typo or a weird bullet point kind of thing.
I will definitely talk to my Dr. about my results and whether they're IS or

by David Fitz (Jul 15)

You can't go negative for a BCR-Abl PCR test. 0 is as low as it goes, whether on the international scale or not.
Perhaps it was just a typo, or someone using the "-" symbol as a sort of bullet point

by rholtslander (Jul 15)

Thank you so much David and Sandy.
I had a confirmed diagnosis in March from a Bone marrow test. I live in Saskatchewan, Canada. I'm not certain if they use the international system or not as all

by sandy craine (Jul 11)

Hi and welcome,
I second David's remarks... you are right on track for a good response to therapy. You can ask your clinician if your PCR results are from a Lab that is tied to the
Category: Blood tests

Replies: 5

Last updated: 15 July 2017
Justine on 15 July 2017

Category: Blood tests

Replies: 1

Last updated: 15 July 2017

3 mo from diagnosis PCR test results
by sprycml (Jul 15)

MMR means < 0.1% Bcr-Abl. Don't sweat it, most people aren't at MMR until 9-12 months on TKIs, or even longer. Some never quite hit MMR but stay at very low and relatively safe

by Justine (Jul 15)

Just got my test results. What does this mean? Doctor appointment on Thursday to ask him.
BCR/ABL1 of b3a2 Type: 6.82% International Scale Ratio:
5.6606%
MMR: No
Since it says MMR no, I am
Category: Blood tests

Replies: 1

Last updated: 15 July 2017
alliswell on 21 April 2017

Category: Blood tests

Replies: 8

Last updated: 14 June 2017

18th month PCR RESULT , A Blip and Next Step ?
by David Fitz (Jun 14)

Congratulations - that result is well into MMR territory! Excellent news.
David.

by alliswell (Jun 13)

i got the last result for PCR test today. and i guess the test of april was just a technical or lab sourced raise . not so good but definetely not bad. we are on track again .
29/05 gave sample for

by alliswell (May 23)

we made a small change to our program .
23/05 meeting with doctor (was today)
23/05 or 29/05 PCR test - as soon as i convince my mom to go to hospital again.
12/06 PCR Result and

by alliswell (Apr 28)

david hi and thanks again
yeap , your last message summarize all our history and dilemma.
not having MMR ( 18 month or later ) but if your trend is going down this is not an issue . on the
Category: Blood tests

Replies: 8

Last updated: 14 June 2017
Mike B on 16 May 2017

Category: Blood tests

Replies: 4

Last updated: 18 May 2017

Stay course or switch TKI
by David Fitz (May 18)

Sounds like a sensible plan. Best of luck!

by Mike B (May 18)

Thanks for the comments. After meeting with my oncologist we are staying on Imatinib for now. She did say a case could be made to switch. We will check again in 6 weeks and again at my 9 month mark

by Olivia (May 17)

Hello and welcome, Mike
Personally, if you are doing OK on imatinib - and it sounds as if you are - I'd stick with it. I've been on it nearly 8 years now and have had no problems apart

by David Fitz (May 17)

Hi Mike,
There's no concensus on this really. Some studies suggest that reaching 10% (on the International Scale) by 3 months is desirable, and correlated with good outcomes. Others are of the
Category: Blood tests

Replies: 4

Last updated: 18 May 2017
Jyellak on 12 April 2017

Category: Blood tests

Replies: 6

Last updated: 23 April 2017

Question about PCR plateau
by cmljax (Apr 23)

By the way, if you stay at MMR or better, you will most certainly die from something other than CML. Since you are better than MMR and PCR numbers continue to decline, why switch? It

by cmljax (Apr 23)

As long as your PCR's continue to improve, it would be premature to switch medicine and take on a whole new side effect profile. The newer TKI's (Tasigna and Sprycell) are stronger and

by EvaH (Apr 19)

I've had a very quick response so I cant really say much but have you watched this video?
http://www.cmlsupport.org.uk/videos/how-should-cp-phase-cml-management-b...
I found it very informative

by Jyellak (Apr 13)

Sorry I made a typo it's a 0.126 for the April number. Thank you for answering
Category: Blood tests

Replies: 6

Last updated: 23 April 2017
Daphne Lynn on 5 April 2017

Category: Blood tests

Replies: 2

Last updated: 6 April 2017

13 week test result
by Daphne Lynn (Apr 6)

Thank you Nigel for your reply. Following your information regarding the conversion rate and some more research this afternoon I feel confident that I now have the questions that I need to ask my

by nigel (Apr 5)

Hi Daphne, sorry to hear your numbers are not as low as recommended, however the first thing to find out is is this 24% raw number, or is it on the International Scale. For example the Hammersmith

by Daphne Lynn (Apr 5)

I was diagnosed with CML in December 2016 and was immediately prescribed Imatinib (400mg per day). I have just received my first molecular test result and following my research of CML I was
Category: Blood tests

Replies: 2

Last updated: 6 April 2017
jameskp on 19 March 2017

Category: Blood tests

Replies: 1

Last updated: 23 March 2017

CML patient for past 7 years last blood results shows Alpha-fetoprotein too high.
by sandy craine (Mar 23)

Hi Jams,
From a brief skim of the internet I have found the following information on raised levels of AFP and what that might mean. I hope the following is helpful.
Sandy
See links here

by jameskp (Mar 19)

Dear friends, My father diagnosed CML on 2010 and on imatinib til this date. He is 79 years old and 300mg imatinib worked fine for him so far. Apart from some digestion problem and nausea he is
Category: Blood tests

Replies: 1

Last updated: 23 March 2017
jilu on 21 November 2016

Category: Blood tests

Replies: 5

Last updated: 2 March 2017

understanding BCR-ABL levels
by jilu (Mar 2)

HI Sandy,
Thanks for your quick response .

I started dasatinib 3 months back , is exactly when I had my PCR test . I am doing PCR tests every 3 months.
Regards,

Jilu

by sandy craine (Mar 1)

Hi Jilu,
Well you have obviously responded to dasatinib as your Bcr/Abl level has reduced considerably. If this result is from a sample given 1 month ago (2 months from starting dasatinib?)

by jilu (Feb 27)

Hi all,
Here is my latest bcr-abl results . Initially I was on imatinib 400mg but changed to dasatinib 100mg daily 3 months back due to severe bone and muscle pain. Latest bcr-abl shows 4.9781% on

by EvaH (Dec 11)

This primer is JUST was I was looking for, thanks Sandy!
Category: Blood tests

Replies: 5

Last updated: 2 March 2017