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cmljax on 13 March 2018

Category: Blood tests

Replies: 22

Last updated: 31 December 2019

My first blip up
by scuba (Apr 10)

... or he can achieve what I did and take only 20 mg Sprycel!

by LouiseS (Apr 10)

Oops I missed that. Thank you. Now I have to tell my husband to take 16 tablets daily! Luckily they nearly finished.
I did place an order yesterday with Physician Naturals. Double checked and

by scuba (Apr 10)

Hi Louise,
Regarding Curcumin supply - keep in mind number of caplets per container and how many caplets make up one serving in order to get the correct mg dose. These labels can be tricky and

by LouiseS (Apr 10)

Hi there I am glad you feel free to share your concerns here and get comfort. I feel exactly the same way and can only imagine how much harder it was for patients in the past who didn't have access
Category: Blood tests

Replies: 22

Last updated: 31 December 2019
William1567 on 2 April 2018

Category: Blood tests

Replies: 7

Last updated: 5 April 2018

Concerned about my PCR results
by sandy craine (Apr 5)

Hi Scuba, yes.... See our booklet on q-PCR for a background on chromosomes, what they are, where they are and a nice visual of the 9/22 translocation.
Page 4 onwards. https://www.

by William1567 (Apr 4)

I'm deeply grateful for the replies here. Thank you to all of you!

by scuba (Apr 3)

Hi Sandy,
I think it is important for our community to know and to understand where the number "9" and number "22" chromosome sit in our hematopoietic stem cells.
They are right next to each other.

by sandy craine (Apr 3)

Welcome to this forum William.
To answer your question, I agree with both David and Alastair on this. The lab that does your PCR must have a pretty amazing method of detection. If 2 results
Category: Blood tests

Replies: 7

Last updated: 5 April 2018
Lbritz on 2 April 2018

Category: Blood tests

Replies: 2

Last updated: 3 April 2018

I do not understand my results
by David Fitz (Apr 3)

Hi Laura,
The answer to this probably heavily depends on when you were diagnosed. When was that?
David.

by AlastairC (Apr 2)

Laura the key thing here is that your results need to be reducing. The fundamentals of this test are explained here.
The reduction you quote is a bit slower than ideal for a 3 month period, but

by Lbritz (Apr 2)

I had a hard time getting my oncologist to return my calls with my lab results. A nurse called me and told me my BCR went from 8.13 to 6.69 over the last 3 months. I have no reference to know what
Category: Blood tests

Replies: 2

Last updated: 3 April 2018
ayaz ahmad magray on 26 March 2018

Category: Blood tests

Replies: 2

Last updated: 2 April 2018

Slight increase in bcr abl
by kat73 (Apr 2)

I would wait for another PCR to see if there is a trend. What numbers you have now are both safe and their difference statistically insignificant. Most practitioners are not starting

by MartinZA (Mar 27)

Hi there
Your results are way better than mine ever were - I was also on 100mg Sprycel (dasatinib) and it took me 18 months to get to 0.22%. I stayed on 100mg and eventually reached lower -

by ayaz ahmad magray (Mar 26)

I was daignosed in may 2017 taking sprycel 100mg. In december 2017 my bcr abl % was 0.1272 and in march2018 it slightly increases 0.2247 my hemotoligst wants to increase my dose to 140 mg if next
Category: Blood tests

Replies: 2

Last updated: 2 April 2018
Chuckster on 26 March 2018

Category: Blood tests

Replies: 2

Last updated: 27 March 2018

New Blood Work Numbers (Initial Results)
by Chuckster (Mar 27)

Thanks!

by scuba (Mar 27)

You're doing fine. Stay on top of your blood counts and test every week until you stabilize.
Sprycel is well known for myelo-suppression. Neutrophils and platelets are the main cell counts to watch

by Chuckster (Mar 26)

Just got the blood-work results from Friday
I've been on Sprycel for a total of 14 days so far:
WBC went down from 19.8 to 16.6
RCDW went up from 14.6 to 15.6
Platelet Count dropped from 142 to 119
Category: Blood tests

Replies: 2

Last updated: 27 March 2018
laxmikant on 2 March 2018

Category: Blood tests

Replies: 6

Last updated: 8 March 2018

A question about PCR result interpretation
by laxmikant (Mar 8)

Nice to hear the same Romo. Thanks

by laxmikant (Mar 8)

Thanks and I wish speedy response for your husband too. Best

by laxmikant (Mar 8)

Thanks AlastairC, that was very reassuring. Yes I suffered from a few side effects initially like muscle cramps and digestive disturbances etc. But after six months they disappeared. I hope they do

by T and M (Mar 7)

Hi Laxmikant. Looks like your result is really fantastic. My husband is on Imatinib and started at 90% myeloid cells and by 4 months was 6.06%. Sometimes too good of a response
Category: Blood tests

Replies: 6

Last updated: 8 March 2018
AndrewRego on 20 February 2018

Category: Blood tests

Replies: 6

Last updated: 24 February 2018

Poor three month PCR
by T and M (Feb 24)

We know the feeling as well. My husband was dianosed in September 2017 and he was at 90% and at 2 months he was 34% and at 3 months he was 36%. Very disappointing and it was talked about

by AndrewRego (Feb 23)

Thank you, everyone, for all your positive responses. I know it's probably a cliche to say but finding this forum has been such a huge boost for me and I can't thank everyone enough.
In terms

by SteveJT (Feb 22)

Hi Andrew,

I had exactly your experience back in December 2014.

I'd been dxd in September 2014. I was just starting to think I was 'getting to grips' with having CML. I had a very

by sandy craine (Feb 21)

Hi Andrew and welcome to this forum.
Yes there are many of us who did not have optimal PCR results when first on TKi treatment. I know this first PCR result must be disappointing for you, however
Category: Blood tests

Replies: 6

Last updated: 24 February 2018
RC Kirk on 9 February 2018

Category: Blood tests

Replies: 7

Last updated: 10 February 2018

Question about starting Sprycel and Labs
by David Fitz (Feb 10)

When I said "what's going to really radically change" I meant in my particular case of going from 100mg to 70mg of dasatinib. Seems a pretty safe change that wouldn't warrant weekly monitoring.

by scuba (Feb 10)

"Realistically, what's going to really radically change?"
In one week, my neutrophils dropped from 1.2 to 0.3 - dangerously low. I had to have a drug break until my counts recovered which took weeks

by LouiseS (Feb 9)

Kirk I think you should at a minimum have a blood test every 2 weeks if not weekly for the first 6 weeks. I believe Sprycel is a much more potent drug than Gleevac. Also it will help your

by David Fitz (Feb 9)

I suppose it's different everywhere. I dropped from 100mg to 70mg of dasatinib, so increased PCR tests from once a quarter to every six weeks. I don't think weekly, or even monthly monitoring would
Category: Blood tests

Replies: 7

Last updated: 10 February 2018
cct121 on 19 January 2018

Category: Blood tests

Replies: 9

Last updated: 21 January 2018

Fluctuating Log Reduction results
by Justine (Jan 21)

I neglected to mention that I have been on 400 mg Gleevec since day 1.
Take care!

by Ellie Regina Grey (Jan 21)

Hello there,
My diagnosis was also in December 2016, with CML % count so high that even the lab commented: "unable to provide accurate number". Let's not talk about my white blood counts!
Funny,

by cct121 (Jan 21)

Thanks for the information pamphlet David!
Justine, that’s roughly the same trend I followed in the first year. It does look like you’re heading on a good recovery trend!!:)

by Justine (Jan 20)

These are my results. My tests are done in a lab in New Jersey, USA.
7 April 2017 date of dx
BCR/ABL1 of b3a2 Type: 59.08% International Scale Ratio: 49.0364%

6 July 2017 3
Category: Blood tests

Replies: 9

Last updated: 21 January 2018
JacqJohn on 10 January 2018

Category: Blood tests

Replies: 2

Last updated: 19 January 2018

Low WBC and sensitivity to TKIs
by AlastairC (Jan 19)

Hi John. Low WBC on imatinib has been my experience since I was diagnosed in 2007.
I always had low wbc, first investigated in the 1980s when I had a testicular cancer. (it is likely that the

by sandy craine (Jan 14)

Hi John,
your overall white cell count is lower than the normal ref count but given you are being treated with TKI therapy (and so recently diagnosed) your white cell count will be lower than

by JacqJohn (Jan 10)

Hi all,
ive been diagnosed with CML back in Sept 2017. Was first put on hydroxyurea then started on Nilotinib. However after a week into Nilotinib, my liver function test went up very high
Category: Blood tests

Replies: 2

Last updated: 19 January 2018
Carolinemb on 17 January 2018

Category: Blood tests

Replies: 2

Last updated: 17 January 2018

PCR / BCR
by Carolinemb (Jan 17)

Thank you for taking the time to explain this..

by David Fitz (Jan 17)

Hi Caroline,
Welcome to the forum.
This is one of those occasions where people get confused, and you regularly see them mixing up their terminology. But you have found the right place to get the

by Carolinemb (Jan 17)

Hi,
i am newly diagnosed this week & trying to understand everything. Could anyone explain if a BCR test is the same thing as a PCR test? And what is the difference between BCR & what PCR
Category: Blood tests

Replies: 2

Last updated: 17 January 2018
rsgiles on 2 January 2018

Category: Blood tests

Replies: 10

Last updated: 5 January 2018

PCR test
by Justine (Jan 5)

Ellie a big thanks to you, too (please see my response to David; same to you).

by Justine (Jan 5)

David, I just want to thank you for that very smart, kind, reassuring and helpful reply. After 9 months since diagnosis I am still constantly perplexed by it. Your statement clarifies a great deal.

by Ellie Regina Grey (Jan 5)

Hello,
I concur with what David has put down regarding the term "undetectable" to translate a PCR test result.
To me, the word "undetectable" has a close link with the word ""impossible" in my

by David Fitz (Jan 4)

Hi,
0.004% means four in one hundred thousand. 0.0092% means ninety-two in a million (nine and a bit in a hundred thousand). If one is IS and the other is not IS (international standard) it
Category: Blood tests

Replies: 10

Last updated: 5 January 2018
HelenS on 30 November 2017

Category: Blood tests

Replies: 3

Last updated: 21 December 2017

BCR-Abl level up
by T and M (Dec 21)

Hi Helen. I hope this finds you more settled with what you are facing. My husband has been on Imatinib for 2 and 1/2 months now. He started at 89.7%, went to 34.43% and the last

by EvaH (Dec 4)

Hey there
Sorry you are feeling stressed by the numbers, however do remember, at some point they are just numbers...indicators! The important thing is how you FEEL physically and if you can get on

by Olivia (Dec 1)

I can understand your concern, Helen.
It may be that your second "miraculous" result was less than accurate, as this sometimes happens and the other two results show a reasonable decline.

by HelenS (Nov 30)

I was diagnosed in January this year. My BCR-ABL at diagnosis was 18.9%.
At 3 months on Imatinib it was 12.6%.
At 6 months 0.045% which my consultant said was a miraculous result.
Then
Category: Blood tests

Replies: 3

Last updated: 21 December 2017
rosegrace on 20 November 2017

Category: Blood tests

Replies: 1

Last updated: 21 November 2017

One year After CML
by David Fitz (Nov 21)

Hi -
400mg is the usual starting dose of imatinib. After 3 months, the goal is about 10% but people should not get too hung up on the exact number.
2.7% after 6 months is pretty good. A lot

by rosegrace (Nov 20)

I have been taking Imatinib (Veenat) for a year. I started with 300mg and my PCR test at 6 months was 15%(IS). So my doctor increased my mg to 400mg and after another 6 months I'm just down to 2.7
Category: Blood tests

Replies: 1

Last updated: 21 November 2017
ColoradoGuy on 17 November 2017

Category: Blood tests

Replies: 2

Last updated: 21 November 2017

Low WBC?
by Tbrand (Nov 21)

Hello Colorado Guy, I’m from there also. Anyhow, 30 days after diagnosis, on Gleevec, my WBC count went from 94,000 to 1000. It stayed low for about 3 months and I was put on an antibiotic during

by David Fitz (Nov 17)

Hi there, and welcome!
Dasatinib can be myelosuppressive which means it can decrease bone marrow activity a bit, resulting in fewer red blood cells, white blood cells, and platelets.
I too

by ColoradoGuy (Nov 17)

Hello all and thank you for all of your posts and information that is available on this site. I wad diagnosed three months ago with a WBC of 258 (age 37). I am taking Dasatinib 100mg and
Category: Blood tests

Replies: 2

Last updated: 21 November 2017
CarrieF on 31 July 2016

Category: Blood tests

Replies: 4

Last updated: 5 October 2017

Blood work results that prompted investigation
by stashhunter43 (Oct 5)

Hi, I have an appt with my general doctor tomorrow and have been researching my blood test results. My platelets were high 540, up from 425 from a blood test 2+ years ago. This time my

by David Fitz (Jul 31)

Carrie,
Though high white cell and neutrophil counts are a CML marker, that's not the only reason you would see them elevated. A routine bacterial infection would also see elevated levels of

by CarrieF (Jul 31)

Hi David

Thank you for replying. I am being treated for an autoimmune disease so I have lots of routine blood work.

Over the last 4 months my platelets and WBC count has been rising and

by David Fitz (Jul 31)

Hi Carrie,
Almost always, it's an elevated white blood cell count (neutrophils, particularly) is the marker than is seen in blood that causes further investigation, leading to a CML diagnosis.
Category: Blood tests

Replies: 4

Last updated: 5 October 2017
Kym on 27 August 2017

Category: Blood tests

Replies: 6

Last updated: 21 September 2017

New to cml could do with advice please
by Kathyp (Sep 21)

Hi, I was diagnosed back in 2003 and it took me along time to come to terms with it and I to had a slow response to glivec , I was put on 600 mg and that has worked its magic . Hope you are ok too I

by Justine (Sep 3)

Hi Kym, I was diagnosed in April. I think denial is a perfectly appropriate response to this disease! As lucky as we are, that this once-fatal disease is now manageable, it is a strange in-between

by johnw1001 (Sep 2)

Hello Kym,
I will not add to what other members of this forum have contributed but perhaps would wish to comment on the issues of "coping" and "support" when diagnosed with a condition like CML.A

by EvaH (Aug 30)

I agree with David. I was 41 at diagnosis last year, my 3 month results were "sub optimal" but my 6 month results were fine and I achieved undectectable very fast (10 months).
There are about 5
Category: Blood tests

Replies: 6

Last updated: 21 September 2017
johnw1001 on 1 September 2017

Category: Blood tests

Replies: 1

Last updated: 3 September 2017

The meaning of an undetectable PCR
by David Fitz (Sep 3)

Hi John,
My understanding is that MR5 is at about the dependable limits of current advanced kit. An old PCR machine in a lab might find a result "undetectable" which a modern one might find is only

by johnw1001 (Sep 1)

All,
I am keen to find out if anyone has explored the meaning of a PCR of undetectable .
August 2016 my PCR was 0.266 and the latest dated 2017 is 0.000 undetectable ;that is after
Category: Blood tests

Replies: 1

Last updated: 3 September 2017
nurserachel on 31 July 2017

Category: Blood tests

Replies: 4

Last updated: 1 August 2017

BCR-ABL results inconclusive
by nurserachel (Aug 1)

Hi, yes I guess how people work it out. Per microliter mine at the moment works out at 24,000. Planning on seeing the haematologist and then hope my results don't take too long now. Thanks for

by AlastairC (Aug 1)

Hi Rachel. Most CML cases I've been aware of show an increase in WBC very quickly. MY WBC had been very low (around 2) for more than 15 years pre diagnosis. I moved home, changed doctors and the new

by nurserachel (Aug 1)

Yes it is an odd one really. My WBC varies with no apparent reason for change, varies from 14 up to around 23 with no obvious infection. In addition to this I have high inflammatory markers such as

by AlastairC (Aug 1)

Hi Rachel, its a little tricky to know where to start on this, but a few thoughts. What level is your high WBC? If it is high and stable my understanding would be that CML is unlikely - most of the
Category: Blood tests

Replies: 4

Last updated: 1 August 2017
annie t on 21 July 2017

Category: Blood tests

Replies: 4

Last updated: 30 July 2017

BCR-ABL
by annie t (Jul 30)

Hi Sandy,
I met with my main doctor and he mentioned that the lab has upgraded to IS scale and not to worry about my current percentage.
Regards
Annie

by sandy craine (Jul 29)

Hi Annie,
yes 3 months to wait for another PCR does seem a long time. Could you persuade your doctor that you are concerned and would like another PCR test now?
Sandy

by annie t (Jul 22)

Thanks Sandy for the response. Actually there is no change in the lab. Also rather last 3 were negative and since it is now .01 now I am more worried. Doctor did mention to have a test done after 3

by sandy craine (Jul 22)

Annie, don't worry as your BCR-Abl ratio are still pretty low. This change is from one test so could be an anomaly. Has anything changed such as the lab that did this latest test as opposed to the
Category: Blood tests

Replies: 4

Last updated: 30 July 2017