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tom888 on 14 June 2018

Category: Blood tests

Replies: 8

Last updated: 19 June 2018

TKI and therapy
by tom888 (Jun 19)

After three months of imatinib treatment and a first quantitative count of 0.56% pcr I stopped the drug for 40 days. My last haematological measurements were relatively good! I have no other way to

by Romo (Jun 16)

I dreamed I fell into the dark ocean.
Someone threw me a raft.
I reject the raft because
I might die after I’m saved.

by Tbrand (Jun 16)

Everything we do in life has consequences. CML is a mutation in itself. The sample studies are great low hanging fruit for publication but in my opinion a lot of hyperbole. Too many variables. The

by tom888 (Jun 15)

good afternoon
Category: Blood tests

Replies: 8

Last updated: 19 June 2018
Felix on 16 June 2018

Category: Blood tests

Replies: 3

Last updated: 17 June 2018

6 Month BCR- ABL RESULT
by scuba (Jun 17)

Cool - you are well on your way to a zero after the decimal point.

by Chuckster (Jun 16)

CONGRATS!

Very happy for you!

Chuck.

by David Fitz (Jun 16)

Congrats! That’s a fantastic response. You must be delighted.
David.

by Felix (Jun 16)

Hello all you CML ERS ,I hope you are all feeling well and doing ok.Just had my 6 month BCR-ABL test result and it is 0.79%.My first big fat zero before the decimal point so happy and relieved just
Category: Blood tests

Replies: 3

Last updated: 17 June 2018
Chuckster on 4 June 2018

Category: Blood tests

Replies: 7

Last updated: 13 June 2018

New Bcr/Abl1 (IS) Test Results in from May 30th 2018
by Chuckster (Jun 13)

Thanks for the info!
My Oncologist is on top of it, so based on the X-rays etc, just lowering dosage at this time.
New set of X-rays in 2 weeks.
Chuck.

by kat73 (Jun 13)

That's great news on the reduction. But be advised, diuretics usually don't make a dent in a pleural effusion and corticosteroid treatment can help a little, but a complete drug stoppage has

by Chuckster (Jun 13)

Just got back from my oncologist.
CT with contrast done this morning is showing slight water in left and right lung, but not enough to need to extract with needle or to prescribe a diuretic.

by Chuckster (Jun 9)

Ok latest update from this Wed.- going to give it one more week - changed time of taking med from night to just after breakfast.
I have to get to complete remission in one year ( From Feb 2018 to
Category: Blood tests

Replies: 7

Last updated: 13 June 2018
AlastairC on 9 June 2018

Category: Blood tests

Replies: 4

Last updated: 13 June 2018

ELNet recommendations and NCCN guidelines - MMR in 12 months?
by Romo (Jun 13)

Can you imagine going into the biggest shoe store in the world.
And having a choice of every possible style of shoe or boot or
slipper ever designed to choose from?
The only exception is

by kat73 (Jun 13)

Amen.

by MartinZA (Jun 13)

Hi Alastair
I agree with you 100%. The guidelines were an IMMENSE source of anxiety and worry for me, because I was already very sick when diagnosed and borderline accelerated phase, with a

by David Fitz (Jun 10)

The thing is, these guidelines were made for clinicians not patients. But of course patients read them too, and in these modern times with such access to information it’s impossible not to look
Category: Blood tests

Replies: 4

Last updated: 13 June 2018
robert mcadie on 5 April 2018

Category: Blood tests

Replies: 14

Last updated: 6 June 2018

Consultation
by robert mcadie (Jun 6)

Just got results of 1ST BCR-ABL since going drug free 6 weeks ago. Everything is looking good with the result being 0.002
Robert is feeling really tired and has a fair bit of bone pain but is loving

by robert mcadie (Apr 22)

Will do, hopefully starting tomorrow

by robert mcadie (Apr 22)

Will do, hopefully starting tomorrow

by cmljax (Apr 21)

So Robert is trying cessation and not dose reduction? Whatever the case, please keep us informed. We'll be keeping our fingers crossed
Category: Blood tests

Replies: 14

Last updated: 6 June 2018
Dean on 2 June 2018

Category: Blood tests

Replies: 6

Last updated: 3 June 2018

BCR ABL levels
by Dean (Jun 3)

Thanks David.

by David Fitz (Jun 2)

Abl is expected in a healthy patient, so there’s no “normal” level really. If you have as many BCR-Abl genes as Abl genes you’ll be 100% on your PCR. If there’s 1 BCR-Abl for every 100,000 Abl then

by Dean (Jun 2)

Thanks for the info. My 2 tests were 3 months apart.

by Dean (Jun 2)

Thanks. The two tests were 3 months apart. What would be the normal level of abl - if there is a normal. As the BEC abl went down I expected the abl to go up.
Category: Blood tests

Replies: 6

Last updated: 3 June 2018
Kathyp on 30 May 2018

Category: Blood tests

Replies: 7

Last updated: 1 June 2018

Is glivec classed as chemo
by Kathyp (Jun 1)

Justine no need to apologise, I’ve been taking it 15 years and didn’t know if it was or wasn’t xx

by scuba (Jun 1)

Click link below - another way to think of "chemo" and the drugs we take to treat CML:
http://chemoth.com/types/kinaseinhibitors
The article above is a good summary on how TKI's are a very different

by David Fitz (Jun 1)

It’s a surprisingly murky one, as I understand it. The term “chemotherapy” means different things to a clinician compared to an insurance underwriter. For example, my private medical insurance

by Justine (Jun 1)

I apologize, Kathy, I guess I was wrong. Good to know the correct answer.
Category: Blood tests

Replies: 7

Last updated: 1 June 2018
grahamw on 17 May 2018

Category: Blood tests

Replies: 6

Last updated: 20 May 2018

Diagnosis of accelerated phase
by Lucas (May 20)

chin up, buddy! you should check for some interaction: food or drug (a lot of things can interact with tkis) and have a retest soon (and a mutation analysis), If you were in MMR3, maybe it's just a

by kat73 (May 20)

Graham - Don't give up! Why not switch to Sprycel? I call it the "kitchen sink TKI" because it covers more kinases than any other TKI - it's potent and short-lived, and smaller doses (like 50

by grahamw (May 19)

Hi Lucas,
My previous PCR was 0.1 and the ones before that were below 0.1 as per normal.
My last spike was about 4 years ago and was a singular peak. The consultant is
doing another test, so there

by grahamw (May 19)

Hi David,
Thanks for the swift response. If I'm honest I'd rather take whatever time I could
get with Imatinib, Tasigna looks a different ballgame. Do you know if health
trusts / Consultants
Category: Blood tests

Replies: 6

Last updated: 20 May 2018
Widgeonus on 9 May 2018

Category: Blood tests

Replies: 1

Last updated: 10 May 2018

Anyone ever have multiple tests with unobtainable results (MD Anderson) Trey or Scuba (if you're still on the boards)
by David Fitz (May 10)

Hi - you might find some of the content in section 3 & 4 (page 14+) from our PCR Booklet helpful in understanding why PCR tests can sometimes fail or be inaccurate.
You can find it here - just

by Widgeonus (May 9)

I had blood work on April 10th and the report came back "RNA is inadequate for BCR/ABL1 testing by PCR as judged by sub-optimal amplification of internal control". My doctor reordered the test and I
Category: Blood tests

Replies: 1

Last updated: 10 May 2018
kylelawkc on 21 April 2018

Category: Blood tests

Replies: 3

Last updated: 21 April 2018

Nilotinib—Hypopigmentation
by VioS (Apr 21)

Hii, i have skin lightening on my forhead after 4 years on imatinib, now after 2 months on nilotinib its better, butt i don t think it s going to disapper. i have tried many treatments, with no

by cmljax (Apr 21)

Hi:
I started on Tasigna 600 mg/day in October 2016. I had a number of skin issues, including squamous cell carcinomas, folliculitis, mild petechia. occasional pimples (I am 65 and hadn't had

by cmljax (Apr 21)

Hi:
I started on Tasigna 600 mg/day in October 2016. I had a number of skin issues, including squamous cell carcinomas, folliculitis, mild petechia. occasional pimples (I am 65 and hadn't had

by kylelawkc (Apr 21)

Hi All
I’ve been on Nilotinib 600mg per day since January this year
I’m wondering if there is anyone who’s also taking it experiences skin lightening?
Thank you
Category: Blood tests

Replies: 3

Last updated: 21 April 2018
Justine on 7 April 2018

Category: Blood tests

Replies: 7

Last updated: 12 April 2018

12 month PCR still no MMR
by Justine (Apr 12)

Thank you Cmljax!

by cmljax (Apr 10)

Justine:
Your trend is right and you could very easily reach MMR on your next test. This isn't a race, but reaching MMR and better does feel good. As long as you continue to trend down, you

by Justine (Apr 9)

Thank you, Romo, Alastair, Kat, and David. It is really reassuring. I look forward to some time in the future when I will be able to help people as you help me and so many others. Justine

by David Fitz (Apr 8)

Hi Justine,
You’re right that the guidelines say treatment change should be considered is greater than 0.1% at 12 months.
But you’re trend is downwards, and 0.2% is not really very far from 0.
Category: Blood tests

Replies: 7

Last updated: 12 April 2018
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