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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
hyderabadindia on 15 February 2017

Category: Blood tests

Replies: 1

Last updated: 16 February 2017

12 MONTHS PCR TEST RESULTS
by sandy craine (Feb 16)

Thanks for the update... this looks like a good response with the added bonus of less side effects. Well done,
Sandy

by hyderabadindia (Feb 15)

HELLO MADAM,
RECENTLY WE ARE DONE WITH BCR-ABL TEST( ONE YEAR ) AND CBP TESTS...THE RESULTS ARE AS FOLLOWING

1.COMPLETE BLOOD
Category: Blood tests

Replies: 1

Last updated: 16 February 2017
debjal on 3 February 2017

Category: Blood tests

Replies: 3

Last updated: 7 February 2017

PCR reporting
by chrissie (Feb 7)

My consultant asked me to talk to his genetics students (both BSc and MSc students) so they know
1) what they are testing in the lab belongs to an actual person and the importance of accurate

by sandy craine (Feb 4)

Hi, and many thanks for sharing this. I am amazed that someone would try to 'fob you off' with such a statement as 'you wouldn't understand the results'!.... and that this

by debjal (Feb 3)

After a few phone calls, it seems there is no change in reporting. Nurse has now rung me back and given me my results. Why or why do they treat patients like bloody idiots? All

by debjal (Feb 3)

Not sure if I have just been fobbed off by my local hospital. I usually ring up for my PCR results three weeks after they are done, and have always been given the result over the phone.
Category: Blood tests

Replies: 3

Last updated: 7 February 2017
JackyWong on 25 January 2017

Category: Blood tests

Replies: 5

Last updated: 26 January 2017

A little bit worry about the qpcr result
by David Fitz (Jan 26)

Jacky,
You're doing great. It's already brilliant that you are keeping this close to your results. Too many people aren't savvy enough.
So, keep an eye on the PCR numbers but take

by JackyWong (Jan 26)

Thank you for your reply and hope your trail of stopping drug is successful. Sometimes, I have a dream for stopping drug when I reach 3 years pcru. But now... it may not be come true. I hope a cure

by JackyWong (Jan 26)

Thank you for your reply. Yes, it may have a lot of factors to affect the result. So I try to relax myself and don't think anymore.

by Richard42 (Jan 25)

Hi there
Your pcr still looks good to me.
For information, I was undetectable (0.000) from November 2009 until I went on the Destiny trial in April 2014. Since I've been on the trial (
Category: Blood tests

Replies: 5

Last updated: 26 January 2017
angela.koleska on 29 December 2016

Category: Blood tests

Replies: 4

Last updated: 11 January 2017

bcr-abl blood test
by angela.koleska (Jan 11)

Hi Nigel, thank you for your responce, Happy New Year and all the best to you too!
I will definetely post her next results here and ask of your opinion. In the meanwhile I do not know if its the

by nigel (Jan 2)

Hi Angela, happy new year first of all to you, your sister, and of course everyone here.
Whilst this has been a slower response than is the guidelines, it is very encouraging to see that her

by angela.koleska (Jan 2)

Thank you for your reply Chrissie, Happy holidays and best wishes!
My sister is treated in Macedonia(Europe), when she was diagnosed they only performed a qualitative bcr-abl test, not a

by chrissie (Jan 1)

Hi Angela
Others may be along soon to respond to your post now Christmas and New Year have passed.
I would say that although your sister may seem to be reacting slowly, her PCR results are
Category: Blood tests

Replies: 4

Last updated: 11 January 2017
Kenny on 21 September 2016

Category: Blood tests

Replies: 12

Last updated: 19 November 2016

Last br abl test showed a spike
by David Fitz (Nov 19)

Hi Kenny,
Since the last result was quite a big jump after some time off taking TKIs, its good to see this has settled. Hopefully at your next test you'll see a really good improvement in

by Kenny (Nov 19)

Hi,
My latest bcr abl test result stayed at 0.25.
I'm getting another test in January, hopefully the result improves by then.

Kenny

by David Fitz (Oct 7)

Hi Kenny,
Good to hear you have another test coming up - that is a jump that is near enough to a log change, so definitely something to keep a close eye on. When I took a break from TKIs for just

by Kenny (Oct 7)

Hi,
My results were 0.033 and are now 0.25, I'm getting another bcl abl test at the end of the month, when I will have been back on glivec for 2 months, so hopefully
Category: Blood tests

Replies: 12

Last updated: 19 November 2016
Ollie on 18 October 2016

Category: Blood tests

Replies: 12

Last updated: 2 November 2016

PCR at Hammersmith following allo BMT
by chrissie (Nov 2)

Hi John
How are you doing now? Really hope the side effects have abated,
best
Chrissie

by Parklife (Nov 1)

Hi Darley
Not wanting to deviate too far off topic here, but how are you feeling having been off TKI's for so long?
Are you feeling slightly/much different from being on Imatinib? If so, in what

by darley (Oct 31)

I had MUD BMT and then 5 years after had a rising PCR. In my case rapidly rising. I went on imatanib and had rapid success. I'm now 26 months in on the DESTINY trial and have had 14

by Ollie (Oct 28)

Thanks David,
That's a very helpful way of looking at it, and thanks for your example. I think as we have been through one molecular relapse in 2008, any minor increase in BCR-ABL, even
Category: Blood tests

Replies: 12

Last updated: 2 November 2016
jilu on 24 October 2016

Category: Blood tests

Replies: 2

Last updated: 27 October 2016

need Information on complete haematological response.
by sandy craine (Oct 27)

Hello Rajesh,
David has already put a higher than average WBC's into the context of infections etc. In the context of your treatment with 400mg imatinib at almost 3 months from start of therapy

by David Fitz (Oct 24)

Hi Rajesh,
I'm not great with the Indian numbering system. Lakh - is that 1,000,000?
White blood cell counts can move around quite a lot in perfectly healthy people. If someone without CML has a

by jilu (Oct 24)

Hi ,
just wanted to know how long it will take for WBC to get normal for newly diagnosed when on Imatinib 400mg.
its my 82nd day on imatinib 400mg intially my WBC counts were close to 3 lakhs and
Category: Blood tests

Replies: 2

Last updated: 27 October 2016
hyderabadindia on 27 July 2016

Category: Blood tests

Replies: 1

Last updated: 30 July 2016

RT-PCR results
by sandy craine (Jul 30)

Hi,
I might be that your wife's symptoms are because she is anaemic. Imatinib can suppress the red cells so it is often the case that the haemoglobin level (HGB) is a little low. If it is under

by hyderabadindia (Jul 27)

6 MONTHS RT-PCR for monitoring M-BCR/ABL1(p210)mrRNA transcripts
Dear Madam,
6th month RT-PCR RESULTS

BCR/ABL1 COPY NO
Category: Blood tests

Replies: 1

Last updated: 30 July 2016
Doshi on 19 May 2016

Category: Blood tests

Replies: 2

Last updated: 19 May 2016

Gleevec resistance?
by David Fitz (May 19)

Hi Raj,
With regards to timing ... with imatinib, you are "topping up" a level in your body so breakfast or lunch ought not to make a difference really. Though it's best to take as

by nigel (May 19)

Hi Raj, Welcome to the group. Your results have been outstanding for 10 years. I do feel that your " blips" are exactly that and not resistance. Your levels are still very very low and

by Doshi (May 19)

Hello All,
I am new to the group. Hope you can help answer my question.
History: I was diagnosed CML in 2001. After 2-3 years On gleevec 400mg, I was in major molecular response and
Category: Blood tests

Replies: 2

Last updated: 19 May 2016
rsgiles on 4 May 2016

Category: Blood tests

Replies: 9

Last updated: 10 May 2016

How often between PCR tests
by teddyb (May 10)

Hello.

I have been tested every 3 months up until now, but after 4 years of CML, and being in MMR for the last 3 years, i am now having pcr tests done every 6 months.

Good luck to you

by sandy craine (May 6)

MUGA scans are usually for those who have had radiotherapy to the chest, spine or upper abdomen or those who have had a stem cell transplant or certain 'chemotherapies'. I had to have a MUGA

by darley (May 6)

Not because of imatanib. But I do know that some chemo can cause heart problems. Not so far as I'm aware the TKI's though.
I have had one and because I had total body

by rsgiles (May 5)

Did anyone ever have to take that MUGA test for the heart?
Category: Blood tests

Replies: 9

Last updated: 10 May 2016
blueyes74 on 27 April 2016

Category: Blood tests

Replies: 4

Last updated: 30 April 2016

BCR-ABL test results
by markmcd (Apr 30)

I'm in East Cheshire and am advised to allow five weeks lead time for getting the results back to the consultant after giving a blood sample. My tests are done at Manchester Royal Infirmary.

by blueyes74 (Apr 29)

I had blood taken on the 1st of March and the results were ready on the 10th. The delay was with Hammersmith from what North Middx have told me. It's the second time in a row

by darley (Apr 28)

I don't really know how long they take to be available nowadays. I just pick them up once a month when I check in at the hospital. So that does obviously mean they're available

by David Fitz (Apr 28)

Mine tend to take about 3-4 weeks, sometimes a little quicker. That's from Barts.
Quicker is always nicer. Do you know where the bottleneck is? i.e. has the lab report been done and the results
Category: Blood tests

Replies: 4

Last updated: 30 April 2016