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Faith_05 on 22 July 2020

Category: Blood tests

Replies: 20

Last updated: 9 September 2020

New to all these
by Faith_05 (Sep 9)

Sandy and Zaccar thank you very much for your replies.
I will seriously consider changing the doctor. Tomorrow I will start my new dose and I hope and wish that everything goes well !!In October i

by sandy craine (Sep 9)

Hi Faidra,
Tasigna: first line treatment in newly diagnosed CML is 600mg (300mg twice daily). I assume the doctor who prescribed 8oomg per day is not expert in CML and may have

by Zaccar (Sep 9)

Wow! congratulations,
I'm a man, very tall and I weigh 120kg and I'm on 800mg and responded to it after ten days (all my blood cells were in normal range). 800mg is a very high dosage

by Faith_05 (Sep 8)

Hi to all!!!
I am going to reduce the dose of tasigna I am taking. From 800 to 600mg.
I just turned and completed five months of treatment.
The reason I do this is because I talked to
Category: Blood tests

Replies: 20

Last updated: 9 September 2020
johnw1001 on 2 August 2020

Category: Blood tests

Replies: 4

Last updated: 5 August 2020

BCR/ABL ratios % and IS factors
by AlastairC (Aug 5)

Hi John, glad the input was useful. Certainly process times have gone down over the years; I was involved around 15 years ago in the first implementation of a same day forensic DNA profiling system

by johnw1001 (Aug 5)

Hi Alistair,
Thank you for your expert input .One of the benefits of new equipment it seems is a faster turnaround time for the results to emerge .When long ago I was dx I was advised that it took 2

by Sunny (Aug 5)

Thank you Alastair for this explanation.

by AlastairC (Aug 2)

Hi John, having managed a UKAS accredited microbiology lab, I hope I can help. As part of the UK Accreditation Service audit (against the standard ISO 17025), equipment has to be shown to be
Category: Blood tests

Replies: 4

Last updated: 5 August 2020
Batman0424 on 29 July 2020

Category: Blood tests

Replies: 6

Last updated: 5 August 2020

Immature Granulocytes 0.0 -> 1.3 %
by Tater1 (Aug 5)

Thank you! That is what I was able to find out from my Dr as well. I really appreciate the info.

by Nimbus2 (Jul 31)

I found this:
Immature Granulocytes (%)
A healthy result should fall into the range 0 - 0.5 %.
Immature granulocytes are white blood cells that are immature. Small amounts of white blood cells

by Nimbus2 (Jul 31)

I had a look back and observed that my IG was 18.34 when my white blood count was 74.49 shortly after diagnosis. The IG has later been zero or a small number less than 1.
My consultant tells me that

by Tater1 (Jul 31)

Thanks Alex! You’re right... we will get there! Faith in the process and enjoying life is so important, especially now. I have a great Dr. and I know he will call the
Category: Blood tests

Replies: 6

Last updated: 5 August 2020
Trevorp93 on 2 June 2020

Category: Blood tests

Replies: 5

Last updated: 25 July 2020

Need advice on Sprycel dosage
by terris (Jul 25)

Let me share my expereince,
I am Hong Kong CML Patient diagnosed on Jan 2014 when I only 30 years old.
During the next fix years, I taken 100mg as dosage and keep log4 result steadily.
Since

by terris (Jul 25)

Let me share my expereince,
I am Hong Kong CML Patient diagnosed on Jan 2014 when I only 30 years old.
During the next fix years, I taken 100mg as dosage and keep log4 result steadily.
Since

by Karthikeyan (Jun 2)

Hi six years back i had suffered with proctitis.i had the same symptoms you are going through now.i took pentasa for just 15 days and got relieved from symptoms.i don't know how severe is your

by Karthikeyan (Jun 2)

Hi six years back i had suffered with proctitis.i had the same symptoms you are going through now.i took pentasa for just 15 days and got relieved from symptoms.i don't know how severe is your
Category: Blood tests

Replies: 5

Last updated: 25 July 2020
Justine on 16 July 2020

Category: Blood tests

Replies: 5

Last updated: 21 July 2020

BCR ABL numbers going up
by Praa (Jul 21)

Hi,
You go for double dose, insted of 400 mg, take onther 200 mg per day, per day 600 mg, it will work good.
Thanks 😊😊

by Justine (Jul 17)

Thanks for this advice and reassurance. I was not able to make my March quarterly appointment because everything was locked down and I was stuck at a friend's in a different city for March-April

by Justine (Jul 17)

Thanks Alex. I have been on 400mg imatinib since diagnosis. My doctor did request a mutation test which came back negative. I am working on getting in to see a leukemia specialist at Stanford

by ColoradoGuy (Jul 17)

From looking at these results I don't think there is much difference in the last three results. 0.1219 of course makes it seem worse because it is just outside MMR but I think the outlier
Category: Blood tests

Replies: 5

Last updated: 21 July 2020
cct121 on 12 June 2020

Category: Blood tests

Replies: 7

Last updated: 13 June 2020

Changes in Log results - Dasatinib
by cct121 (Jun 13)

Thanks Scuba,
From browsing through the forums, and other advices, I'm starting to take multivitamins, and then looking into finding a nutritionist who can help see what other deficiencies my

by scuba (Jun 12)

"Just for clarity, are the values of Log-reduction based on each individual patient's initial diagnosis?" Should be.
You are going to be fine. Stay aware and track. Listen to

by cct121 (Jun 12)

Understood, the next time I go see my oncologist I'll see if the lab that sends the results has these values written down (I'm sure they do). Since my diagnosis, all of the reports I've

by scuba (Jun 12)

PCR is typically reported as a percentage ..... PCR = 0.xx. If you are in MMR then your PCR would be below 0.1 %. Log reporting is always relative to starting PCR at diagnosis and is different for
Category: Blood tests

Replies: 7

Last updated: 13 June 2020
patricia donlon on 8 June 2020

Category: Blood tests

Replies: 0

Last updated: 8 June 2020

Question please
by patricia donlon (Jun 8)

I was diagnosed last August. Have been taking Imatinab 400mg since.
March 4 2020 BCR/ABL1 results were : E13A2 (B2A2) was 0.4891-----E14A2 (B3A2) was 4.2755
April 30th
Category: Blood tests

Replies: 0

Last updated: 8 June 2020
Chuckster on 3 June 2020

Category: Blood tests

Replies: 7

Last updated: 3 June 2020

Latest Blood Test Results: May28, 2020
by scuba (Jun 3)

This is what I take and not specific to CML patients. I wish I had known about the importance of these prior to CML and had been taking them. At diagnosis my vitamin D level was 17 ng/ml):
1.

by scuba (Jun 3)

If I am not eating foods rich in zinc (Oysters), I just take a daily supplement from time to time (15 mg). Women need less than men. No specific brand, just reputable. I tend to take zinc every day

by Karthikeyan (Jun 3)

Hello scuba, what are the supplements cml patients should take other than vitamin d3.

by Felix (Jun 3)

Hi Scuba, just going to add Zinc to my other vits ,how much do you recommend please ,thank you , Denise.
Category: Blood tests

Replies: 7

Last updated: 3 June 2020
lupus on 27 May 2020

Category: Blood tests

Replies: 0

Last updated: 27 May 2020

Blasts in peripheral blood after 12 months of treatment (MMR reached 3 moths ago).
by lupus (May 27)

Hi,
may I ask how often is having 0,5 % blasts in peripheral blood after reaching MMR? I have been tested today and other blood parameters were ok. I am still waiting for todays PCR results, but
Category: Blood tests

Replies: 0

Last updated: 27 May 2020
Ray Sell on 22 May 2020

Category: Blood tests

Replies: 4

Last updated: 23 May 2020

Lab change and my BCR/ABL numbers went up
by Ray Sell (May 23)

David thank you for all the information.
Ray

by David Fitz (May 23)

PCR is done on a machine and is a complex process, amplifying genetic code thousand and thousands of times. Newer machines employ different ways of doing it, so it’s not always directly

by Ray Sell (May 22)

David
Lab Corp: May 2018 B2A2 .0032 B3A2 0.1482 Sept 2018 B2A2 0.0032 B3A2 0.1123 Jan 2019 B2A2 0.1694
B3A2 0.1482

by David Fitz (May 22)

Hi Ray,
The IS system is not perfect, and not all labs are on the IS anyway and even those that are do not always report results on the IS. Mine, for example, is IS calibrated but reports local
Category: Blood tests

Replies: 4

Last updated: 23 May 2020
ckquinn on 18 May 2020

Category: Blood tests

Replies: 3

Last updated: 19 May 2020

Hospital Appointment
by alexmcpee (May 19)

I was anxious too. Had blood draw 3 weeks ago and it was safe and well managed. I too wore a mask and gloves.
Have my PCR call with my consultant on Friday. If that wasn’t anxiety inducing

by ckquinn (May 19)

Thanks Denise, all went very well just bloods and medication today, very safe protocols in place. Even braved a visit to the on site Marks and spencer. Hope all is well with you, stay safe.

by Felix (May 18)

Hi, I am surprised your doctor isn't doing telephone consultations as mine did last week. A blood test appointment was made for me at a safer hospital where I don't have to enter the actual

by ckquinn (May 18)

Wee bit anxious about my first lockdown appointment at hospital tomorrow, BCR ABLE bloods due and I need to collect Dasatinib. I had been attending every 6weeks with the hope of coming off meds in
Category: Blood tests

Replies: 3

Last updated: 19 May 2020
gbatalha on 29 April 2020

Category: Blood tests

Replies: 3

Last updated: 29 April 2020

BCR ABL 24 Months
by scuba (Apr 29)

This is why blood testing is so important, because it can guide you how much vitamin D you need on a personal basis. I presume you meant "IUs" daily.
To double your blood level (from 30

by gbatalha (Apr 29)

4000 DUs daily.
My levels are at low 30s ng/ml with the daily supplement.
PS - My skin is very dark, quasi-northern african

by scuba (Apr 29)

How much vitamin D3 do you take per day? Do you know your vitamin D blood level?

by gbatalha (Apr 29)

Hi everyone,
Just wanted to share my recent results to give everyone some level of comfort around variations of BCR-ABL levels (42 years old/400mg Imatinib daily/low risk at diagnosis):
12M - 0,150
Category: Blood tests

Replies: 3

Last updated: 29 April 2020
Gian P on 20 April 2020

Category: Blood tests

Replies: 9

Last updated: 20 April 2020

My doctor increased dosage and now i feel like hell...
by snowman 35 (Apr 20)

You 'Re wright. 😉

by Gian P (Apr 20)

Sounds Good.
I will use the search, i am sure he covered it once or twice already.
Thank you again

by snowman 35 (Apr 20)

You should get Scuba's advice for this! He is the expert! I do not want to tell you something wrong...

by Gian P (Apr 20)

Okay
how much Curcumin should i take daily?
500 mmg okay?
Category: Blood tests

Replies: 9

Last updated: 20 April 2020
Karthikeyan on 9 April 2020

Category: Blood tests

Replies: 1

Last updated: 9 April 2020

To scuba and others about cbc
by scuba (Apr 9)

Many who participate on this forum can provide answers and comments to your questions. A variety of answers can help you decide what is a good course of action that you may want to take.
Not taking

by Karthikeyan (Apr 9)

Hi, i was diagnosed exactly five years ago. But i have very little knowledge about cml as i have completely surrendered myself to my oncologist. So i kindly request scuba and other forum members to
Category: Blood tests

Replies: 1

Last updated: 9 April 2020
Karthikeyan on 6 April 2020

Category: Blood tests

Replies: 1

Last updated: 6 April 2020

To scuba about pcr result
by scuba (Apr 6)

It means you are going to live a very long life.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4786836/
Just an FYI : patients often show initially both p210 and and to a much lesser degree p190

by Karthikeyan (Apr 6)

HI,

RESULT P210 (b3a2, b2a2) major transcript Detected

P190 (e1a2) minor transcript Not detected P230 (c3a2) micro transcript Not detected Observed copies of ABL1 163664
Category: Blood tests

Replies: 1

Last updated: 6 April 2020
Justine on 31 March 2020

Category: Blood tests

Replies: 3

Last updated: 2 April 2020

Article on CML lab testing
by kali (Apr 2)

Thank you for sharing this great article.

by alexmcpee (Apr 1)

Wonderful write up. And very informative.
Thank you
Alex

by scuba (Mar 31)

Justine - Thanks for the link. Excellent summary.

by Justine (Mar 31)

My brother, who is a pathologist in the US, sent this article. It may be of interest.

https://www.captodayonline.com/in-cml-bcr-abl-monitoring-takes-on-new-im...
Category: Blood tests

Replies: 3

Last updated: 2 April 2020
koralia.pappi on 4 March 2020

Category: Blood tests

Replies: 8

Last updated: 13 March 2020

Ways to measure D3
by onekayaker (Mar 13)

Thanks and yes I use k2....Full Spectrum puts out a k2 with mk4 and 7. I was taking k2 twice a day same as the d3.

by scuba (Mar 11)

Hi Steff,
Stopping is o.k. - it takes months for vitamin D to drop only by half - and it takes months to build. Make sure you are taking vitamin K2 every day as well (200 mcg). K2 uses D as it moves

by onekayaker (Mar 11)

ok I will go to 5,000 ui per day. I am a bit afraid to stop completely since working at a airport now I come into contact with many people. I miss the solitude of my old career.

by scuba (Mar 6)

I had that happen once where I tested at 100 (transition from winter to spring). What I did was stop taking vitamin D3 completely for 3 weeks and re-test.
It takes about 60 days for 1/2 of vitamin D
Category: Blood tests

Replies: 8

Last updated: 13 March 2020
bendicco on 29 February 2020

Category: Blood tests

Replies: 7

Last updated: 1 March 2020

Blood Draw Kit
by bendicco (Mar 1)

Thanks David, that’s very helpful. Yes I would have the nurse do it! I’m assuming that Sloan will send it to me and include a return label , FedEx overnite I guess. I hope that the test

by David Fitz (Mar 1)

Once, yes. We needed to test my sister for HLA matching with me, but she lives abroad so they gave us a blood kit to give to someone there. We actually just did it ourselves because she and my step-

by bendicco (Mar 1)

Thanks David. Have you personal experience with the kit?

by David Fitz (Mar 1)

Various anticoagulants and preservatives are used and can be identified by the colour of the collection tube.

Purple: EDTA. Commonly used for FBC tests.
Blue: sodium citrate. Used for tests
Category: Blood tests

Replies: 7

Last updated: 1 March 2020
Mosalem2093 on 15 February 2020

Category: Blood tests

Replies: 2

Last updated: 16 February 2020

BCR_ABL test and Sprycel
by Mosalem2093 (Feb 16)

Thanks a lot David. ..
I think he was at 36% at the last Tasigna results which let them decide to switch over to Sprycel..I hope that by time he can get to the good levels. He has 100mg Sprycel

by David Fitz (Feb 16)

Hi there, and welcome.
18% after 2 months is pretty good. The “optimal” result at 3 months is 10% - and if at 18% at 2 months I would expect him to achieve that optimal result at 3

by Mosalem2093 (Feb 15)

Hi all,
I am new to this forum. My dad has CML and they switched him from Tasigna to Sprycel as doctor claims it's not working given the subject test recent results. He suffers from side effects
Category: Blood tests

Replies: 2

Last updated: 16 February 2020
Chuckster on 11 November 2019

Category: Blood tests

Replies: 12

Last updated: 16 February 2020

Latest Blood Test Results BCR/ABL1 .
by Mosalem2093 (Feb 16)

Hi Scuba,
Do you have a link to these ASH papers that Sprycel 20 mg is effective as my dad has similar case and would like to share it with his doctor,

by Chuckster (Feb 15)

Thanks Scuba!
I am so glad my oncologist agreed with me to ride this past six months out by staying with the 20 MG Sprycel dosage than trying a different Med.
20MG, so far, seems to be

by scuba (Feb 15)

Cool. You know I am not surprised!
(Kat - I believe there were several papers at ASH on low dose sprycel's effectiveness (20 mg). I'll have to find them again)

by Chuckster (Feb 14)

THANKS!
Category: Blood tests

Replies: 12

Last updated: 16 February 2020