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MJP on 9 February 2019

Category: Blood tests

Replies: 6

Last updated: 15 February 2019

0.029% at 9 months
by LabNoir (Feb 15)

Thanks, I did read a bunch of paper about increasing PCR and Some paper suggest a variance of 0.5 log, others 2 fold increase. But I guess none of these apply at around MR4 as it reach the detection

by RC Kirk (Feb 12)

Good morning Mark,
As you haven't had any side effects, I can understand why your doc doesn't want you at a lower dose. The research I've read indicates that drug breaks due to

by AlastairC (Feb 12)

The difference between 0.026% and 0.017% is well within the accuracy limits of the test process - to all intents and purposes they are the same. You are clearly a hare (getting to MMR in 6 months),

by LabNoir (Feb 12)

I also just got my 9 month PCR and it is similar to yours at 0.026% but I ain’t happy about it at all since my 6 month number is 0.017%! It is funny how these simple sequences of numbers can
Category: Blood tests

Replies: 6

Last updated: 15 February 2019
Dustylloyd on 23 January 2019

Category: Blood tests

Replies: 11

Last updated: 30 January 2019

Nilotinib dosage
by Dustylloyd (Jan 30)

Hi Lucas, thanks for the reply, you started exactly 1year before me on 800mg Nilotinib and like you Imatinib didn’t have the effect my doctor was looking for and hence I have been on Nilotinib

by Lucas (Jan 29)

Hey, dusty! 800mg is/was the dose for those who were intolerant/resistant to imatinib, as i was! i started 800mg nilotinib in september/2014 and still on it, despite been under MMR4 most of that

by Dustylloyd (Jan 29)

Thanks cmljax and every one at Cml Support group, you’re replies to any questions are so helpful, it’s very reassuring that as a member of the Cml “club “ support is here,

by cmljax (Jan 29)

You don't have to reach MR4.5 to begin dose reduction. You might feel better about dose reduction if you are at MR4.5, but many of the trials required only MMR (MR3.0). Dcotors are
Category: Blood tests

Replies: 11

Last updated: 30 January 2019
Anonymous (not verified) on 4 January 2019

Category: Blood tests

Replies: 11

Last updated: 25 January 2019

Meaning of the test?
by alliswell (Jan 25)

Possibly his test is just a PCR( RT-PCR ) test, not a quantitative one.
If this is the case, still negative is good news.
My mother's history
@Dx qRT-PCR : %54,61

by Phuong Phuong (Jan 23)

Hi David,
I got it, My boyfriend is continuing to take 400mg Imatinib per day. Thank you for your informative advices. I am really appreciated. As my boyfriend will have the long jouney

by Phuong Phuong (Jan 23)

Thank you so much Kirt. We have already had the copy of the BCR ABL report. We will continue to save and track the number now and then.

by David Fitz (Jan 22)

That is an unusually quick response, but of course not impossible. It sounds like he is definitely doing well.
But before you run a victory lap, there are a couple of things to remember.
Category: Blood tests

Replies: 11

Last updated: 25 January 2019
Felix on 15 December 2018

Category: Blood tests

Replies: 10

Last updated: 17 January 2019

Am I becoming resistant to Imatinib ?
by AlastairC (Jan 17)

Hi Denise
Sorry to hear this but glad you are now in the care of an expert team who can deal with this situation effectively. The bone marrow is necessary to see the types of mutation(s) you are

by Felix (Jan 16)

Hi all, just had my appointment with a new consultant in a different hospital .It looks like I am becoming resistant to Imatinib so might soon change to Nilotinib.How are the side effects with this

by Ray Sell (Dec 28)

That sounds really positive. Please post updates on your progress. A belated Merry Christmas to you and a Happy New Year to you.
I have blood draw Jan 3 and am looking forward to it.

by Felix (Dec 26)

Hi Ray ,yes following rules non of the forbidden fruits ,it's the squished red grapes I am missing the most especially with my Christmas dinner 🍷🍷🍷.I am just waiting for an appointment with a
Category: Blood tests

Replies: 10

Last updated: 17 January 2019
POPPY on 16 January 2019

Category: Blood tests

Replies: 3

Last updated: 16 January 2019

PCR TEST @ 12% & Low Levels of Platelets
by David Fitz (Jan 16)

I would not worry about the dose. 300mg (twice daily) is the standard dose for nilotinib, and is in no way a low dose.
David.

by POPPY (Jan 16)

thanks David. what worries me is the next PCR test as dose has been reduced to 300mg. However, with dose reduction, side effects are definitely well managed.
The platelets were 70,000 per ml

by David Fitz (Jan 16)

10% at 3 months is considered "optimal", and 12% is as near as makes no difference to that so it's an excellent result. Exactly what you would hope for.
How low are your

by POPPY (Jan 16)

Hi All!
3rd month results of PCR @ 12% , is it alarming? This test was taken when at Nilotinib 4oomg (twice a day).
After the blood test was taken for PCR, dose reduced to Nilotinib 300mg (twice a
Category: Blood tests

Replies: 3

Last updated: 16 January 2019
ipmaki on 15 January 2019

Category: Blood tests

Replies: 3

Last updated: 15 January 2019

Elevated Lactate Dehydrogenase Test (LDH)
by ipmaki (Jan 15)

Thank you for the responses. I didn't do anything too strenuous before the test, but as I read more about LDH I am starting to think that it could be influenced by a cold I've been fighting

by RC Kirk (Jan 15)

Hi Ian,
Looking back at some of my lab results, it looks like the "normal" range for LDH is 110 to 250. Your result is barely above high normal so I wouldn't worry about it. I'd

by cmljax (Jan 15)

Hi. The most important thing for you right now is the trend in your PCR which has been continually falling. There are hares and there are turtles and while it feels better at the time to be a

by ipmaki (Jan 15)

Hi all. Just got my 12 month results (PCR of 0.256%). I've been on Sprycel 100 mg for the past year and not quite meeting the 0.1% goal. I guess I am a slower responder. Previous results were:
Category: Blood tests

Replies: 3

Last updated: 15 January 2019
DawnD on 21 December 2018

Category: Blood tests

Replies: 2

Last updated: 23 December 2018

Advice needed again
by DawnD (Dec 23)

Hi David, I quess I didn’t explain myself well on the post. Yeah that was the problem, couldn’t tolerate activity and heart rate was too fast. I actually stopped the Spyrcel on my own

by David Fitz (Dec 23)

Forgetting about the numbers for a moment -how do you feel?
Perhaps you are just very sensitive to dasatinib and only need a small dose to manage things. That would be a pretty great outcome.

by DawnD (Dec 21)

Fish and PCR negative after 3 months of Sprycel. Started at 100Mg then down to 60 mg. On 12/4 WBC was 3, RBC 3.4, H:H 11.3/33.5, neutrophils,1380. 12/18 WBC down to 2.5,RBC 2.8, H/H 9.6 / 27.8,
Category: Blood tests

Replies: 2

Last updated: 23 December 2018
AF on 4 December 2018

Category: Blood tests

Replies: 4

Last updated: 5 December 2018

Increased HB after stopping Dasatinib
by AF (Dec 5)

Thanks David for your reply makes me feel a lot better

by AF (Dec 5)

Yes hameglobin. So if I change to your scale mine will be 13.6

by David Fitz (Dec 5)

Dasatinib can be myelosuppression - that means it can lower blood counts.
Your increase in Hb (haemoglobin) is likely down to you coming off dasatinib and is a good thing. You might feel a little

by RC Kirk (Dec 5)

What is Hb? Is it hemoglobin? If it is, then your result might be normal if your lab uses a different scale than mine.
Here's what my online chart shows: Lab Test - Hemoglobin
Category: Blood tests

Replies: 4

Last updated: 5 December 2018
AF on 26 November 2018

Category: Blood tests

Replies: 3

Last updated: 27 November 2018

TKI Blood Levels for Dosage Adjustment
by AF (Nov 27)

Will do - thanks very much for both of your responses.

by AlastairC (Nov 27)

Through my job at the time managing some teams of toxicologists I became aware of work under Prof Bob Flanagan at Kings in London whose team have developed modern methods of measuring plasma levels

by RC Kirk (Nov 26)

I was seeing a doc at a research hospital for a time. He ordered an imatinib plasma level test because I had lowered my Gleevec dose to 200 mg/day. If I remember correctly, the result

by AF (Nov 26)

Has anyone had experience with testing for TKI levels in their bloodstream to help optimize dosage? They don’t perform these types of tests in the UAE but we will travel abroad if anyone can
Category: Blood tests

Replies: 3

Last updated: 27 November 2018
MJP on 22 August 2018

Category: Blood tests

Replies: 5

Last updated: 25 November 2018

A bit confused with recent FISH result
by scuba (Nov 25)

The number 9 and number 22 chromosome are packed next to each other very tightly right at the bcr and abl breakpoints. Translocating these genes is very easy and most certainly happens all of

by Nimbus2 (Nov 24)

Thank you, Scuba, for your explanation provided above. I found this using the search tool. Incidentally, the search tool provided on this site is excellent.
I have re-read your posting about 10

by MJP (Aug 23)

Thank you.

by scuba (Aug 22)

MJP -
FISH is the most important measure and prognosticator of success in CML treatment. FISH counts actual CML cells under the microscope and is expressed as a percentage of normal cells. At
Category: Blood tests

Replies: 5

Last updated: 25 November 2018
DawnD on 2 November 2018

Category: Blood tests

Replies: 9

Last updated: 6 November 2018

PCR versus Fish
by sandy craine (Nov 6)

Hi Dawn,
You might want to give our Q-PCR Primer for Patients a read.... see link below.
Re: cytogenetics/FISH and qualitative PCR testing: (used to confirm the presence of BCR/ABL1 and thus

by DawnD (Nov 3)

Good info David. Thanks so much. So appreciated!

by DawnD (Nov 3)

Thank you RC Kirk for response. So appreciate it

by DawnD (Nov 3)

Scuba, As always, thank you so very much.Great info.
Category: Blood tests

Replies: 9

Last updated: 6 November 2018
sathish on 28 October 2018

Category: Blood tests

Replies: 3

Last updated: 30 October 2018

pcr result-.0017 with 56% bcr-abl positive.
by sathish (Oct 30)

Thank you kirk for your reply.i think i just became imatinib resistant.now shifted to nilotinib.

by JohnFromChicago (Oct 29)

Do you have numbers reported like this...

Copies of BCR-ABL per 1000 copies of ABL: 0.33
...this correlated to roughly .04% PCR at least on my test results

by RC Kirk (Oct 29)

Hello Sathish,
Welcome to the CML support group. It's hard to say if your CML is expanding or if your test results might be inaccurate. Have your tests always been performed by the same

by sathish (Oct 28)

hello everyone,im new and this is first post.i was diagnosed when i was 28 years old and was taking imatinib 400 mg.my recent pcr result is .0017 with 56% positive cml presence.is this possible.but
Category: Blood tests

Replies: 3

Last updated: 30 October 2018
chrissie on 19 October 2018

Category: Blood tests

Replies: 6

Last updated: 19 October 2018

Frequency of PCR testing
by chrissie (Oct 19)

Thanks, looking good for you
Best
Chrissie

by chrissie (Oct 19)

Thanks, another one at 6 weeks.
Best
Chrissie

by chrissie (Oct 19)

Thanks David. 6 weeks seems a sensible period in between or even 2 months. Not too happy leaving it at 3 months but, providing my hospital are prepared to pay for more frequent PCR testing, and my

by RC Kirk (Oct 19)

Hi Chrissie,
For what it's worth, most of my PCR tests have been at 3 month intervals.
Gleevec 400mg/day - 2014 000.174%, 000.088%, 000.064% 2015 000.049%
Gleevec 200mg
Category: Blood tests

Replies: 6

Last updated: 19 October 2018
Tbrand on 16 October 2018

Category: Blood tests

Replies: 1

Last updated: 16 October 2018

Best results
by RC Kirk (Oct 16)

Congratulations!

by Tbrand (Oct 16)

Diagnosed 1/2016, MMR 1/2017, .03 or so until last result from 07/2018 gotten today is .000 I feel great! Finally! On Imatinib.
Category: Blood tests

Replies: 1

Last updated: 16 October 2018
Poppert on 14 September 2018

Category: Blood tests

Replies: 14

Last updated: 15 October 2018

Is it ”safe” to rely only on PCR test?
by RC Kirk (Oct 15)

Hi David,
It sounds like you're eager to get back to work. You had mentioned you would be able to return when you have achieved a cytogenetic remission. I was curious what criteria will

by David83 (Oct 14)

Alastair/Sandy,
I wasn’t sure if Nilotinib was the chosen TKI for reasons I wasn’t aware of, or if it was just traditionally the second one tried if Imatinib failed. I’ll be sure to have a good chat

by sandy craine (Oct 14)

Hi David,
I agree with Alastair's suggestion that dasatinib (or even bosutinib) may be a better option for you given your working schedules as a pilot and the need to strictly adhere to the fasting

by AlastairC (Oct 13)

Hi David, I'm not really qualified to talk about nilotinib as an alternative for you - I've been lucky that imatinib worked for me and I have not had to learn about the other TKIs. Have you shared
Category: Blood tests

Replies: 14

Last updated: 15 October 2018
J. HY Wong on 14 October 2018

Category: Blood tests

Replies: 1

Last updated: 14 October 2018

Great results, but what next?
by sandy craine (Oct 14)

Josiah, congratulations on your optimal response to dasatinib (50mg) .... reducing further may be best kept for the future, when you are certain of the stability of your molecular response.

by J. HY Wong (Oct 14)

Three months in 50mg dasatinib, and the numbers are looking good!
19 June 23.3881%
21 July 9.5966%
07 September 0.4610%
Very excited, could be achieving MMR very soon. But my WBC counts remain low,
Category: Blood tests

Replies: 1

Last updated: 14 October 2018
gbatalha on 30 July 2018

Category: Blood tests

Replies: 15

Last updated: 1 October 2018

Imatinib apparent failure
by RC Kirk (Oct 1)

That's great news Gonzalo! Why did it take them so long to get your results to you? I can see why the two month wait was agonizing. Are you scheduled for another PCR test at your

by sandy craine (Oct 1)

Gonzalo, very good/wonderful news.. thank you for keeping this forum updated on your experience. I am sure you and your family are very much relieved and you can now see a future where you will

by AlastairC (Oct 1)

Gonzalo, Excellent news, delighted for you. Hope this puts your mind at rest.

Alastair

by gbatalha (Oct 1)

Dear all,
After two very long months I have finally received all the information from my bone marrow analysis (taken at 3/4 months).
Bone Marrow visual analysis - CML in remission
Mutation - None
Category: Blood tests

Replies: 15

Last updated: 1 October 2018
jason77 on 27 August 2018

Category: Blood tests

Replies: 10

Last updated: 1 October 2018

Rising FISH %
by Poppert (Oct 1)

Sounds like the right thing to do. I did a ”mutation analysis” too, I didn’t have to wait too long for the results. It seems your old doctor did a lot of strange things.

by jason77 (Sep 29)

Hey Scuba, He didnt prescribe a new med yet, wants the results first to make sure I dont have a T135 mutation. I asked about sprycel and he is receptive at starting on 70 mg and go from there. Thank

by scuba (Sep 29)

Did your new doctor start you on a new drug in the mean time?

by jason77 (Sep 28)

Saw the new Dr today and he has ordered a series of mutation tests and PCR. He was in disbelief that the old dr never tested for mutations or any follow up PCR since dx .I was dx last september and
Category: Blood tests

Replies: 10

Last updated: 1 October 2018
scuba on 18 September 2018

Category: Blood tests

Replies: 22

Last updated: 23 September 2018

"Undetected"
by Isla D (Sep 23)

I'm conjuring up an even smaller 10mg Sprycel tablet for you in my imagination Scuba so you could try 10mg per day for six months before quitting completely.
Also wondering about you getting your

by cmljax (Sep 22)

Thanks Scuba - thought this would be your answer. By the way, I listened in on part of the UK CML conference this morning, and the doc reporting on DESTINY results indicated that he thought

by scuba (Sep 22)

cmljax - He did not provide a source to me, just told me via email on the 5 years being best (instead of two).
He would consider PCR < 0.003% as the same as undetected. Any IS value < 0.01% is

by cmljax (Sep 22)

Scuba: Could you please share the source of your oncologist's data that shows that the length of being undetectable is an independent predictor of success in cessation attempt? Would he consider
Category: Blood tests

Replies: 22

Last updated: 23 September 2018
DawnD on 14 August 2018

Category: Blood tests

Replies: 50

Last updated: 3 September 2018

WBC level at diagnoses
by Chuckster (Sep 3)

Great Story!
Thank You Dennis!!

by Dennis (Sep 3)

Well that’s great DawnD.
if it helps others, that’s all I want.

by DawnD (Sep 3)

Amazing story of survival!!!!! Inspirational for a newbie like me!

by Chuckster (Sep 3)

Feb 12 2018- The day I was told by my Oncologist all tests verified I had CML: 19,800.
From March 2018 to Aug 22nd- latest blood test- decreased from 19.800 to 7,800. ( From 100mg then
Category: Blood tests

Replies: 50

Last updated: 3 September 2018