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johnw1001 on 5 May 2022

Category: Blood tests

Replies: 7

Last updated: 9 May 2022

Lymphopenia
by scuba (May 9)

Conversion factor: 1 ng/ml = 2.5 nmol/L
60 - 80 ng/ml = 150 nmol/l - 200 nmol/l

by sandy craine (May 9)

Just to remind you that in the UK (and other EU countries) D3 is measured in nmol/L rather than ng/ml so you would need to convert your test result if you are following US based research/

by johnw1001 (May 6)

Chrissie,
I would not expect a GP to have in depth knowledge of how Vit D impacts on the immune system and nor would I expect them to understand the mechanisms of CML and how tkis themselves may as

by chrissie (May 6)

A question - why are my GP and haem both happy with my current Vit D levels at 53. I have been taking 1400IUs daily for a couple of years after my levels were " low". I shall continue on
Category: Blood tests

Replies: 7

Last updated: 9 May 2022
cmhall604 on 11 April 2022

Category: Blood tests

Replies: 2

Last updated: 16 April 2022

Immature granulocytes in peripheral blood
by cmhall604 (Apr 16)

Hi Sandy,
Thanks very much for your reply. Got the results back yesterday and she's back to PCRU! I guess a little bit is nothing to worry about.
Cheers,
Chris

by sandy craine (Apr 13)

Hi Chris,
From what I understand, I don't think you need to be concerned. The appearance of myelocytes (1%) in your wife's peripheral blood is is probably due to an infection.
"

by cmhall604 (Apr 11)

Hello, I haven't posted in quite a while but my wife just had another checkup so I'm back with another question. She has been doing well over the past two years since diagnosis, reaching
Category: Blood tests

Replies: 2

Last updated: 16 April 2022
Myra on 5 April 2022

Category: Blood tests

Replies: 7

Last updated: 11 April 2022

Same PCR level from last 3 times
by ColoradoGuy (Apr 11)

I would say that I normally see a plateau for three test results before it goes down again. My plateaus normally include at least one result that goes up from the previous results. They

by hannibellemo (Apr 8)

Myra, I know it's disappointing to hit a plateau but in terms of survival you are at a very safe spot. I love how doctors say what they want when, other than taking our meds as directed, we have

by scuba (Apr 8)

Something to keep in mind is that once you achieve complete cytogenetic remission (CCyR), progression free survival rates are no different statistically than with patients who achieve deeper

by Myra (Apr 8)

I get your point that it's a safe place to me with such low level. In the starting the response to Dastanib was very good and within a year the value was 0.14... but now there is a plateau and
Category: Blood tests

Replies: 7

Last updated: 11 April 2022
VinayJagnani on 17 March 2022

Category: Blood tests

Replies: 5

Last updated: 19 March 2022

BCR-ABL %
by JohnFromChicago (Mar 19)

Age 34 here I was diagnosed at 28 my PCR result bounces between .02 and .08. Seems as of recent people have been seeing more fluctuations in their PCR results as well. I believe this maybe due to

by ColoradoGuy (Mar 19)

I would not say that it is common but it is nothing to worry about. Being under 1% good news, and .026 even better. I don't know your age but I have noticed on this and other forums that younger

by VinayJagnani (Mar 18)

Hello Friends,
Thanks everyone for the response. Its so reassuring to hear so positive response and happy to hear that this is common.
I feel so much better now.
Thank You.

by ColoradoGuy (Mar 17)

There is no reason to increase dose at these levels. You can remain here for months before you see another drop. Or it can increase slightly before coming down again. It is like small ripples
Category: Blood tests

Replies: 5

Last updated: 19 March 2022
Deni H on 14 January 2022

Category: Blood tests

Replies: 10

Last updated: 17 March 2022

BCR ABL Increase
by Norma_55 (Mar 17)

Hi there don’t worry too much about the bone marrow biopsy it’s not as bad as you think it might be, I had one in 2020 from the hipbone.
and as far as side affects from treatments go not

by Deni H (Feb 23)

Thanks Sandy.
I think they are starting me on Dasatinib when I go back in 2 weeks. I had another Bone Marrow Biopsy yesterday to get a good base line.
Any ideas what possibly to expect with side

by sandy craine (Feb 22)

Hi Deni,
Sorry to hear you have developed a mutation but don't worry too much. I assume your clinician has already identified the particular mutation and will let you know what it is?
There are

by Deni H (Feb 21)

Hi All
I hope you're all well.
Just an update from my post in January. I saw my consultant today who has confirmed a mutation in my recent BCR ABL and increase to 1.9 from 1.16 in November.
So
Category: Blood tests

Replies: 10

Last updated: 17 March 2022
steven7 on 13 March 2022

Category: Blood tests

Replies: 4

Last updated: 16 March 2022

Change lab and BCR result increase
by johnw1001 (Mar 16)

Hi
Most specialists would not be that concerned with your figures because if your PCR score is less than 0.1 then you are in safe territory and very much in MMR.Even if you were above 0.1 and

by sandy craine (Mar 14)

Hi Steven, I hope so... but the project to ensure the standardisation of labs using PCR for CML (known as international standard - IS) has been a challenge over the years.
Best to you,
Sandy

by steven7 (Mar 14)

Thanks sandy.
I am in Canada so hope that's less problematic.
Anyone who got same experience please share.

by sandy craine (Mar 14)

Hi Steven,
The problem with changing labs is that they may be using a different 'housekeeping gene' that that used by the first lab... plus there may be other issues to do with expertise and
Category: Blood tests

Replies: 4

Last updated: 16 March 2022
jb on 11 March 2022

Category: Blood tests

Replies: 1

Last updated: 14 March 2022

Please advise
by sandy craine (Mar 14)

Hi JB, concerning your ANC. I am not sure your should be too worried about with this result - 1.6. According to the reference ranges- see link here as long as ANC is above 1.5 there should

by jb (Mar 11)

I recently received the results of my latest PCR BCR/ABL and there was a slight increase in my numbers. Also, my WBC and Absolute Neutrophils have dramatically dropped to below the low norms.
Category: Blood tests

Replies: 1

Last updated: 14 March 2022
ishbc6 on 19 February 2022

Category: Blood tests

Replies: 3

Last updated: 21 February 2022

HELP!! DR Wants bone marrow biopsy: Currently on Tasigna
by ColoradoGuy (Feb 21)

They probably want to run a karyotyping test to see if there are any other additional chromosomal abnormalities rather than looking for percentage blast cells. That of course is just a guess,

by ishbc6 (Feb 19)

I was diagnosed in October 2020. Had one bone marrow biopsy, now they want to do another one. I had a mutation test when I switched from Imatinib. Came back normal I am assuming, because I didn

by johnw1001 (Feb 19)

Hi,
There have been some postings here on Forum in the past re the use of the bone marrow biopsy as opposed to relying on the much less invasive use of peripheral blood i.e.the pcr of bcr/abl.The

by ishbc6 (Feb 19)

Hello All,
I am currently taking Tasigna 150 MG 3 times a day for a few months now. BCR is slowly coming down, however my Platelets have dropped for the last 3 months, as well as my WBC, ANC. I was
Category: Blood tests

Replies: 3

Last updated: 21 February 2022
Danmason11 on 15 February 2022

Category: Blood tests

Replies: 3

Last updated: 15 February 2022

First BCR-ABL results sub optimal
by sandy craine (Feb 15)

Hi Dan,
Yes I understand. Queen Elizabeth hospital is a centre of excellence for CML etc. so maybe you could ask for either 'shared care' or preferably a referral? 4-5 weeks seems an overly

by Danmason11 (Feb 15)

Thank you so much for the reply Sandy, I really appreciate it.

I am being treated in Wolverhampton, and must admit to feeling a bit let down in terms of care and support aside from

by sandy craine (Feb 15)

Hi Dan,
It's really difficult not to be anxious when first diagnosed. Your doctor's use of the term 'sub-optimal' will not have done anything to reassure you, but their qualification

by Danmason11 (Feb 15)

Hi all
i was diagnosed in August 2021 and started in 400mg Imatinib. Had my first blood test in November, but never got told the BCR-ABL results until today. I had my second blood test last week, so
Category: Blood tests

Replies: 3

Last updated: 15 February 2022
Gian P on 3 February 2022

Category: Blood tests

Replies: 2

Last updated: 4 February 2022

CAR T CELL Treatment Cure for Leukemia
by Gian P (Feb 4)

I share this with my Onco doctor, she told me that this therapy is the last resource and can be very toxic for the body with high mortality rate... i am guessing is not for everyone, but, yes, i

by ColoradoGuy (Feb 4)

Wow. That is amazing. Great news for those with CLL. I remember when I was diagnosed being told that if you were going to have cancer CML was the one you wanted....Maybe not the

by Gian P (Feb 3)

I was reading about this article and found it very interesting, I figured to share it here.
https://amp.cnn.com/cnn/2022/02/02/health/cancer-t-cell-therapy-remissio...
Category: Blood tests

Replies: 2

Last updated: 4 February 2022
EvaH on 18 August 2021

Category: Blood tests

Replies: 42

Last updated: 3 February 2022

Here goes - first bcr/abl after dose reduction
by Gian P (Feb 3)

Vodka sounds great! I might have some 60 mml around... i can start with those;)
thank you!

by EvaH (Feb 3)

Oh lordy, triangle tablets...not easy!
Maybe you can dissolve them in something (vodka?) and use the required amount of liquid each day.

by Gian P (Feb 2)

i will definitely start that routine and keep everyone posted about the results, Buzz thank yiu for taking your time and articulate the process, i am still not sure how precise my splitting of the

by Buzzm1 (Feb 2)

Gian, based on the results of at least your last four quarterly BCR-ABL tests, you are in a plateau and should be able to begin gradually reducing your TKI dosage. For the benefit of others,
Category: Blood tests

Replies: 42

Last updated: 3 February 2022
Felix on 23 January 2022

Category: Blood tests

Replies: 2

Last updated: 24 January 2022

TFR timing
by Felix (Jan 24)

Hello Buzz ,thank you for taking the time to reply to me with excellent advice ,very much appreciated ,Kind Regards ,Denise.

by Buzzm1 (Jan 24)

Denise, gradually reducing your dose from Dasatinib 20mg to 10mg would likely be better for you; i.e., skipping every fourth day would effectively average 15mg/day, before skipping every other day

by Felix (Jan 23)

Hello, hope you are all ok .I am 64 , and two months into my fifth year of having CML and I have been undetected for 2 years 3 months .I am currently on 20 mg Dasatinib,and have been for about
Category: Blood tests

Replies: 2

Last updated: 24 January 2022
Riggered on 16 August 2019

Category: Blood tests

Replies: 19

Last updated: 13 January 2022

Fish Oil and Dasatinib
by johnw1001 (Jan 13)

Hi All,
May I just update on other benefits of taking high grade Omega 3 fish oils.It is coming up for 16 years on imatinib now and I have always suffered eyelid irritation (blepharitis) and the

by Abe1969 (Jan 13)

It means that DHA makes imatinib better at killing pH positive leukemia. Also it lets the normal pathway that tells normal cells it's time to die work on leukemia cells. These are good things.

by Abe1969 (Jan 13)

It means that DHA makes imatinib better at killing pH positive leukemia. Also it lets the normal pathway that tells normal cells it's time to die work on leukemia cells. These are good things.

by JohnFromChicago (Mar 4)

Hi Sarah,
I started taking fish oil (EPA-800, DHA-400) to attempt to naturally lower my BP a few months ago since then my PCR went form .01 to .07. (I have been bouncing between .01 and .04 for
Category: Blood tests

Replies: 19

Last updated: 13 January 2022
nicolem on 9 January 2022

Category: Blood tests

Replies: 5

Last updated: 10 January 2022

BCR results trending in the wrong direction
by David Fitz (Jan 10)

Great - that means it’s international standard, which makes it simple to compare to treatment goals.
Without that there can be a bit of extra maths required.
David

by nicolem (Jan 9)

Hi David,
I just double checked (we are in the US if that changes anything) and next to her results it does say "BCR-ABL1/ABL1 (% IS)" which I assume stands for International Scale? I

by David Fitz (Jan 9)

Purely anecdotal - but there was a poll on a Facebook group recently about PCR numbers following vaccinations and there didn’t seem to be any reason to think the vaccinations affected results

by nicolem (Jan 9)

Hi David,
Thanks so much for your reply! I do believe she is adhering to her medication, although I know I can't be certain as I don't live with her. But she is very focused on keeping the
Category: Blood tests

Replies: 5

Last updated: 10 January 2022
Ryn on 13 October 2021

Category: Blood tests

Replies: 14

Last updated: 8 January 2022

Starting TFR after 5 years on Dasatinib/4.4 years DMR
by Vikram (Jan 8)

Why younger people not successful in TFR?
Any reason?

Ya only mith??
Younger people immunity better than old people right?
What's reason??
After December to continue off drug (no dose) (000

by Ryn (Jan 1)

Thank you for the advice! I think I'll regain undetected fairly quick. When I was first diagnosed I was at 50.5 and got down to less than .0032 in about 9 months after starting 100mg sprycel. I

by Ryn (Jan 1)

Thank you, Scuba! Definitely going to talk to my doctor about a lower dose.

by Ryn (Jan 1)

Ng/ml. Thank you for the resource!
Category: Blood tests

Replies: 14

Last updated: 8 January 2022
MANNI OBEROI on 6 January 2022

Category: Blood tests

Replies: 0

Last updated: 6 January 2022

Eosinophils increase
by MANNI OBEROI (Jan 6)

Eosinophils is 10 percent....is ther is any problem or not
Category: Blood tests

Replies: 0

Last updated: 6 January 2022
Felix on 18 December 2021

Category: Blood tests

Replies: 13

Last updated: 21 December 2021

PCR TEST FROM NHS
by Ismo (Dec 21)

I have also received email and PCR test but unless I have misread it the Blood Cancer UK info on anitvirals etc suggests that CML patients are not yet eligible for those treatments (I forget names)

by Christine R (Dec 21)

Hi Alistair .
Blood Cancer UK say it cover Sotrovimab, molnupiravir and Ronapreve. I understand they are antivirals and mono clonal antibodies. Sorry if any of that is spelt wrong.

by HelenS (Dec 20)

I received my email today. The email concentrates mainly on the procedure to follow regards the PCR test and what will happen after a positive test. But there is a link in there that takes you to

by David Fitz (Dec 20)

Alastair,
The email is vague. Not purposefully because 99%+ of people won’t know / care about the name of the medication, but just talks about “new treatments”.
The NHS is using
Category: Blood tests

Replies: 13

Last updated: 21 December 2021
Batman0424 on 16 November 2021

Category: Blood tests

Replies: 5

Last updated: 19 November 2021

BCR Elevated from .09 to .18 after treatment stop
by scuba (Nov 19)

The fact that 70 mg has been rough is all more the reason her dose should be lowered. She is very sensitive to Sprycel and lower dose is best if lower dose works. The lower the better in fact.

by Batman0424 (Nov 19)

Thank you all for the feedback, this is very helpful and reassuring. My wife would prefer to be on a lower dose, hopefully that can happen soon. 70mg has been rough.

by kat73 (Nov 19)

I would also like to add that the difference in her test results is so miniscule - statistically insignificant - not worrisome at all. I have experienced what Scuba described - after a short

by scuba (Nov 18)

I had a very similar issue involving neutrophil suppression at 70 mg sprycel (dasatinib). I was taken off treatment until my counts recovered. Then restarted, then had to stop to allow counts to
Category: Blood tests

Replies: 5

Last updated: 19 November 2021
Danmason11 on 13 November 2021

Category: Blood tests

Replies: 2

Last updated: 15 November 2021

First test after diagnosis - what am I looking for and what should I ask?
by Danmason11 (Nov 15)

That’s great. Thanks very much Alastair

by AlastairC (Nov 14)

Hi Dan,
At the top of this page there is a tab labelled "About CML". The first topic under that is "Just diagnosed". Click that link and you will get the distilled experience of

by Danmason11 (Nov 13)

Hi all
I was diagnosed in August and I have my first appointment with my consultant on Tuesday to go through my first blood test results. Just wondered if there were any suggestions or other threads
Category: Blood tests

Replies: 2

Last updated: 15 November 2021
Betty8 on 7 November 2021

Category: Blood tests

Replies: 2

Last updated: 12 November 2021

On the road to a transplant with a (3;21) translocation
by Betty8 (Nov 12)

Hi Sandy
Thankyou for your detailed reply. I had read about your history from other posts in this forum, it’s encouraging to hear of great positive long term outcomes.
I am due to move house

by sandy craine (Nov 9)

Jenny Byrne is an excellent and supportive clinician (and an expert in CML). From what I can understand t3;21 is extremely rare translocation in CML, so hopefully you can move your clinical care to

by Betty8 (Nov 7)

Hello,
I found out yesterday that I am starting the progress to have a transplant.
I was daiagnosed august 2020 and have since failed on Imatinib and Dasatinib… with my BCR ABL never
Category: Blood tests

Replies: 2

Last updated: 12 November 2021