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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
johnw1001 on 29 October 2021

Category: Blood tests

Replies: 6

Last updated: 6 November 2021

What does antibody testing for Covid tell us ?
by scuba (Nov 6)

Just to emphasize a key point - it's not about antibodies. It's about T-cells.

https://thepoliticsofduh.com/2020/09/27/t-cell-immunity-what-fauci-and-t...

T-cells is what protects you from

by johnw1001 (Oct 30)

Hi Christine,
So with the NHS test you presumably were not given a score?
Looking at some of the private ones such as Roche which some labs use the range in terms of the positive score is from 0.8 u

by Christine R (Oct 30)

Hi John
I was given an anti body test at me treating hospital and the result was half that of a normal healthy person but there is still not a level that i am aware of that is known to be an optimal

by scuba (Oct 29)

https://www.medicalnewstoday.com/articles/antibodies-fight-off-the-new-c...?
https://directorsblog.nih.gov/2020/07/28/immune-t-cells-may-offer-lastin...

Professor Tim Spector does an excellent job
Category: Blood tests

Replies: 6

Last updated: 6 November 2021
Poppert on 1 August 2018

Category: Blood tests

Replies: 6

Last updated: 26 October 2021

Time to get PCR test result?0
by jonnie turpie (Oct 26)

Hello

As I am 3 months into CML treatment I am attending for my first PCR test next week.
I read the PCR leaflet you provided the link for and found it very clear in its explanation of

by Poppert (Aug 1)

Ok, I thought maybe they had machines for that and that PCR-analysis was quick.
It was apparently important that I took the samples in the afternoon so it could go fresh with a transport to the lab

by Nimbus2 (Aug 1)

I love all this help and the little ideas. Thank you, Chrissie. I am learning quickly.
For the moment, I am being treated like Royalty. I pop into the newly opened haematology unit in Solihull

by chrissie (Aug 1)

Hi Stephen
This is not relevant to you right now as a newly dx patient but it may be useful to you later.
I have 3 monthly PCR tests done at my local hospital. To avoid the long wait
Category: Blood tests

Replies: 6

Last updated: 26 October 2021
AlastairC on 21 September 2021

Category: Blood tests

Replies: 9

Last updated: 9 October 2021

Larger sample required for BCR-ABL?
by David Fitz (Oct 9)

Just reporting back from Bart’s, where I was on Friday. Just a single lavender (I don’t know why they aren’t just called purple!) for the BCR-Abl PCR test. Of course that’s

by nicolaclubb (Oct 8)

At my local hospital I have alway had 5 ‘purple top’ vials taken for my BCR which get put into a separate bag to be sent to Kings. When Iv had my BCR taken at kings it’s also been

by Felix (Oct 4)

Hi, Alastair ,had my bloods done today and nobody knew about any changes in quantity of sample for BCR ABL.They rang thru to someone to check ,not sure if they actually rang Liverpool tho and the

by chrissie (Sep 28)

I see different phlebotomists most times at my GP surgery and they take out the EDTA files and fill at least 2 sometimes 3 for the BCR ABL in the belief that the more the better. I am the only
Category: Blood tests

Replies: 9

Last updated: 9 October 2021
reginawagner on 27 September 2021

Category: Blood tests

Replies: 13

Last updated: 30 September 2021

CML and no antibodies
by scuba (Sep 30)

Excellent reference!
.... from the article,
"Substantially more vitamin D is required for optimal immune function than for bone health. It seems Dr Fauci is not ignorant of this, having

by Christine R (Sep 30)

Just found this very readable article about vitamin D and T cells with covid
https://www.bmj.com/content/370/bmj.m3563/rr-6

by sandy craine (Sep 30)

Scuba, thanks for taking the time to write this easy to understand summary of an immune response and the important role that D3 plays.
Sandy

by reginawagner (Sep 30)

Thanks so much, that is a bit of a reassurance!
Category: Blood tests

Replies: 13

Last updated: 30 September 2021
ishb1 on 28 April 2021

Category: Blood tests

Replies: 2

Last updated: 29 September 2021

Rising Level of Bilirubin
by JPD (Sep 29)

Ive had bilirubin 1.6 before and my Onc has said not to worry about it in the slightest. Im assuming your other liver panels are within normal range? If so, I wouldnt sweat it at all. Worry

by johnw1001 (Sep 26)

Hi,
I have had some liver issues (certain scores) recently after long term use of imatinib but my Bilirubin is normal. My consultant told me that it is not unusual in the early stages of taking a

by ishb1 (Apr 28)

I am currently on Imatinib 400 MG, diagnosed back in October of 2020. Noticed my bilirubin has been slowly rising the last few weeks. Has any one else had this happen? I read that intense exercise
Category: Blood tests

Replies: 2

Last updated: 29 September 2021
Nonkuthalo on 22 September 2021

Category: Blood tests

Replies: 2

Last updated: 23 September 2021

Can you be pregnant while living with CML
by Nonkuthalo (Sep 23)

Thank you very much for your answer. I'm really relieved to hear that.

by scuba (Sep 22)

Yes.
Once your CML is under control (and it will), you can expect to have a family one day.

by Nonkuthalo (Sep 22)

Hello

My name is Nonkuthalo and I am 27 years old, I have been diagnosed with cml earlier this year and I was wondering if I will ever be able to have my own children one day?
Category: Blood tests

Replies: 2

Last updated: 23 September 2021
KingBurger on 27 August 2021

Category: Blood tests

Replies: 5

Last updated: 18 September 2021

Sprycel
by KingBurger (Sep 18)

Thanks for checking in. I seem to be doing well. I take the Sprycel each morning and the headaches and nausea have all dissipated. The only thing I do notice at times is a rapid and strong heartbeat

by Krissi0913 (Sep 18)

Hi! I take 100 mg Sprycel. My only suggestion is to take it in the evening. Sprycel tends to some fatigue and brain fog for me, so if I take it at 10 pm, I am just sleeping through it.

by Felix (Sep 3)

Hi Kingburger,just checking to see how you are feeling on your new meds .Headaches in the morning? Hope you are feeling ok ,Regards .

by KingBurger (Aug 28)

Thanks Felix for the response. I had this discussion with the CML specialist when he made the change ask if I could take 50mg instead. I lost the debate- his rationale was since I was resistant to
Category: Blood tests

Replies: 5

Last updated: 18 September 2021
Vikram on 23 July 2021

Category: Blood tests

Replies: 23

Last updated: 1 August 2021

WBC
by Vikram (Aug 1)

Hi rc,
BCR-ABL report every 8 months
9/2019 - 2021 ( 2 time)
No future plan...

by Vikram (Aug 1)

Thanx reply...

by EvaH (Jul 31)

Based on the medication prescribed and wbc, the doc thinks you have a minor infection and/or an allergy.
How many people do you need to ask before you believe that based on the information you

by RC Kirk (Jul 31)

Vikram, I'm curious as to your plans for future CML treatment. Are you going to continue ramping your imatinib dose up and down?
Will you try to go treatment free for an extended
Category: Blood tests

Replies: 23

Last updated: 1 August 2021
VinayJagnani on 25 July 2021

Category: Blood tests

Replies: 3

Last updated: 29 July 2021

BCR Levels
by JPD (Jul 29)

while it sucks not seeing that magical (and for some of us mythical) NOT DETECTED - your numbers are great and you are kicking CMLs ass. Rest easy.

by VinayJagnani (Jul 25)

Hello Sandy,
Thanks for the response. It's a relief to read your response and your guidance on that.
Yes, you are right.. I was expecting 2 continuous reports to have not detected, but that has not

by sandy craine (Jul 25)

Hi,
looking at your PCR results, I can't see why you are overly worried. Your last two results are both very low - undetected and 0.068. Is your worry because you have had two results that are

by VinayJagnani (Jul 25)

Hello All,
I hope everyone is safe and doing fine in this pandemic times.
I was detected with CML in September 2018 and have been on Imatinib 400mg. Below are my BCR Levels
From September 2018 to
Category: Blood tests

Replies: 3

Last updated: 29 July 2021
JPD on 16 July 2021

Category: Blood tests

Replies: 1

Last updated: 18 July 2021

Dose reduction approved (yay!) Liver Panel anxiety (boo!)
by sandy craine (Jul 18)

Why are you giving yourself such a hard time? I would say you are probably very aware that you are overthinking your blood results. Focus all your 'worry energy' on the most important - and

by JPD (Jul 16)

First, the good news. We are gonna drop me down from 400mg of Tasigna per day to 300mg and retest after 3 months. My docs thought it totally reasonable (even though I had to ask for it
Category: Blood tests

Replies: 1

Last updated: 18 July 2021
Roza on 6 July 2021

Category: Blood tests

Replies: 6

Last updated: 16 July 2021

12 month BCR reading not as expected
by EvaH (Jul 16)

Ps there was no mutation, im still on 400mg imatanib, with time side effects diminished. Do a search on this forum for tips on managing them. Best of luck!

by EvaH (Jul 16)

I was checked for a mutation due to sub optimal results at 3 months. It seems to be a standard medical protocol when there's a blip in bcr/abl progession.
I agree the extra tests are from caution,

by Roza (Jul 8)

Many thanks, I think there is so much focus on the 12 month point from the time of diagnosis, it just makes it a bit more nerve-wracking than it probably should be. Really appreciate the support.

by ColoradoGuy (Jul 8)

I would wait to see if you have a trend before any switch. It may just be a plateau with a drop coming up. Alistair is right that 0.3% at 12 months is pretty good. I have seen my
Category: Blood tests

Replies: 6

Last updated: 16 July 2021