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Poppert on 21 January 2019

Category: Blood tests

Replies: 4

Last updated: 29 April 2019

”GUS sensitivity”?
by Poppert (Apr 29)

I got this explained from my doctor today.
”GUS sensitivity” in the lab report is just how good the lab did in analysing tests that day.
There are variations when analysing batches of

by Tbrand (Feb 4)

Don’t know about the Gus, but I’ve been on 600 since diagnosis and was .02 at 12 months. May well be a good thing to increase.

by Poppert (Feb 4)

So I got my 12 month PCR result back. Results so far had been:
0 months: 114%
3 months: 12.7%
6 months: 1.3%
9 months: 0.19%
It was looking so good and I was hoping to get below 0.1% at 12 months.

by RC Kirk (Jan 23)

I found this: Is the BCR-ABL/GUSB transcript level at diagnosis an early predictive marker for chronic myeloid leukemia patients treated with imatinib?
https://www.ncbi.nlm.nih.gov/pmc/
Category: Blood tests

Replies: 4

Last updated: 29 April 2019
Philip on 20 April 2019

Category: Blood tests

Replies: 5

Last updated: 21 April 2019

Recent Blood Work
by scuba (Apr 21)

I feel no side effects on 20 mg.

by Philip (Apr 21)

Think that's what I've been thinking after having a few hours to think about it if ya know what I mean. I was taking 50mg of Sprycel for years. Went undetected until I stopped TKI therapy 3

by scuba (Apr 21)

Philip,
I take 20 mg sprycel and remain PCRU ('undetected'). Consider starting at that does and see if you PCR plummets which I suspect it will. You can always increase dose.

by Philip (Apr 21)

Hey David, thanks for the quick reply! I decided to discontinue TKI and try TFR after having a Complete Molecular Response for 8 going on 9 years. Was really hopeful that TFR would work for me.
Category: Blood tests

Replies: 5

Last updated: 21 April 2019
r06ue1 on 18 March 2019

Category: Blood tests

Replies: 4

Last updated: 24 March 2019

6 Month Genetic Testing in America?
by Philiptibbs (Mar 24)

I am not stable yet I was at 27% the last time I was tested and the last test that McLaren Karmanos Flint did on me the lab they used messed my test up so I don't know what I'm at and my

by onekayaker (Mar 19)

I too will be switched to 6 month cycle if my blood work is where there expect it to be and I am in MR4. She also said I could be anywhere I wanted to live and they would mail me a blood kit

by cmljax (Mar 18)

I have been at <.003% for nearly 2 years now. Approximately 1 year ago, my doc switched me to testing every 6 months

by scuba (Mar 18)

six month testing is routine for patients who have demonstrated stable disease below 0.01%. Once I achieved PCRU and held it for one year, I was also switched to six month cycles.
CML in chronic
Category: Blood tests

Replies: 4

Last updated: 24 March 2019
Dustylloyd on 10 March 2019

Category: Blood tests

Replies: 3

Last updated: 12 March 2019

Support at work
by johnw1001 (Mar 12)

Hi there,
If you are in the UK then as soon as one is diagnosed with a cancer you are classified as disabled under the Equality Act and employers would be wise to put in place specific measures to

by Dustylloyd (Mar 10)

Thanks David for your reply, it sounds like you work for a caring, understanding company.

by David Fitz (Mar 10)

I'm very fortunate, my employer has been excellent. I had 3 months off at the start, and returned to a 4-day week over the next few months. I never managed to get back to a 5 day week, but my

by Dustylloyd (Mar 10)

I’ve mentioned this subject before and just wondering what support other Cml members get from their employers, I’ve had 19 days off in 2 years and was recently interviewed in a warning
Category: Blood tests

Replies: 3

Last updated: 12 March 2019
Naj on 7 March 2019

Category: Blood tests

Replies: 10

Last updated: 12 March 2019

BCR-ABL count started to Increase - Tasigna 300 BID
by Naj (Mar 12)

Scuba,
Thanks for the paper.. I am thinking about Sprycel for some time. I will talk about this with my doctor at some point.

Initially I was hoping I can lower Tasigna to just once a day like

by scuba (Mar 11)

Naj,
Consider switching drugs.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6142480/
... only because you prefer not to deal with fasting before or after taking tasigna.
if you switch to sprycel,

by Naj (Mar 11)

Cmljax,
I just had a visit to my oncologist this morning and like all of you guys mentioned on this post, he said I am doing fine . He suggested to be on the same dose for now. I will have next

by cmljax (Mar 8)

If your next PCR improves, you should seriously consider less dose. I reduced from 600 to 450 mg/day when I hit MMR = .1 and my PCR continued to go down. We are all different, but there is
Category: Blood tests

Replies: 10

Last updated: 12 March 2019
Gagan Bansal on 11 March 2019

Category: Blood tests

Replies: 2

Last updated: 11 March 2019

Understanding BCR-ABL1 Quantitative Gene Fusion Analysis
by scuba (Mar 11)

... it also means his father will never die from CML. His results are in the 'noise' of the test - almost indistinguishable from "undetected".

by David Fitz (Mar 11)

Hi,
You can read our PCR Primer for Patients, which will help you learn about PCR tests and how to interpret them.
https://www.cmlsupport.org.uk/node/20097
Your fathers results are very good. Both

by Gagan Bansal (Mar 11)

Hi All,
I need to understand BCR-ABL1 Quantitative Gene Fusion Analysis.
My father got it tested it three time over last three years but i dont understand the parameters defined.
Can some one
Category: Blood tests

Replies: 2

Last updated: 11 March 2019
Phuong Phuong on 23 February 2019

Category: Blood tests

Replies: 3

Last updated: 11 March 2019

Red blood cell count has been falling down
by Phuong Phuong (Mar 11)

Hi Scuba
How is your breathing? My boyfriend is sufferring shortness of breath that makes me so worried, especially at night. What should he do? Will the breathing come to normal over the time?

by Phuong Phuong (Feb 24)

Thanks Scuba, I feel much relieved. His hemoglobin number is 133, that means near normal.
His doctor also said not very many patients get that such early respond and wait for the test on June to

by scuba (Feb 23)

CML drugs can cause minor myelosuppression (blood counts - particularly platelets, neutrophils and red blood cells). This is normal for many patients. My RBC level, for example, is a near constant 3

by Phuong Phuong (Feb 23)

Hi everyone
please give me advice for red blood cell count falling down:
May 2018(At diagnosis): 3.15
Sep 2018 (after 3 months on Imatinib): 4.95
Dec 2018: 4.59
Jan 2019: 4.23
Feb 2019: 4.15
My
Category: Blood tests

Replies: 3

Last updated: 11 March 2019
Chuckster on 30 November 2018

Category: Blood tests

Replies: 5

Last updated: 26 February 2019

Latest Blood Work Results: BCR/ABL-1 Gene, QN PCR
by AlastairC (Feb 26)

Good numbers. Very happy for you.

by Chuckster (Feb 26)

Just back from my Oncologist : Dr. Waina Cheng , Sparta New Jersey. (USA).
She is very happy with my blood test results, achieving MMR!
Diagnosed with CML Feb 12 2018 @ 100.00 and now-

by Chuckster (Feb 23)

*FISH Results from NOV- 2018- 0.000 Not Detected.
Chest X-Ray- no fluid in lower right lung- All Clear.
No Plural Effusion.

Latest Results from this past Monday- Feb 18th 2019
ABL

by Chuckster (Dec 1)

Thank You!
Category: Blood tests

Replies: 5

Last updated: 26 February 2019
Lucky Utubor on 19 February 2019

Category: Blood tests

Replies: 4

Last updated: 20 February 2019

BCR-ABL increase
by RC Kirk (Feb 20)

It will be interesting to see what the result is at your usual lab. Hopefully it's just a fluke and your next test will be back to normal.
Do you usually get a copy of your BCR/ABL1 report

by Lucky Utubor (Feb 20)

Honestly I don’t know but I would ask.

by Lucky Utubor (Feb 20)

Honestly I don’t know but I would ask. My full blood count is normal only the wbc is a little higher 7.3 but still within normal range. Am dead scared .

by RC Kirk (Feb 19)

Yes, your BCR/ABL1 should be retested. Does your lab report the result in the International Scale (IS%)?
Category: Blood tests

Replies: 4

Last updated: 20 February 2019
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