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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
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