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sathish on 28 October 2018

Category: Blood tests

Replies: 3

Last updated: 30 October 2018

pcr result-.0017 with 56% bcr-abl positive.
by sathish (Oct 30)

Thank you kirk for your reply.i think i just became imatinib resistant.now shifted to nilotinib.

by JohnFromChicago (Oct 29)

Do you have numbers reported like this...

Copies of BCR-ABL per 1000 copies of ABL: 0.33
...this correlated to roughly .04% PCR at least on my test results

by RC Kirk (Oct 29)

Hello Sathish,
Welcome to the CML support group. It's hard to say if your CML is expanding or if your test results might be inaccurate. Have your tests always been performed by the same

by sathish (Oct 28)

hello everyone,im new and this is first post.i was diagnosed when i was 28 years old and was taking imatinib 400 mg.my recent pcr result is .0017 with 56% positive cml presence.is this possible.but
Category: Blood tests

Replies: 3

Last updated: 30 October 2018
chrissie on 19 October 2018

Category: Blood tests

Replies: 6

Last updated: 19 October 2018

Frequency of PCR testing
by chrissie (Oct 19)

Thanks, looking good for you
Best
Chrissie

by chrissie (Oct 19)

Thanks, another one at 6 weeks.
Best
Chrissie

by chrissie (Oct 19)

Thanks David. 6 weeks seems a sensible period in between or even 2 months. Not too happy leaving it at 3 months but, providing my hospital are prepared to pay for more frequent PCR testing, and my

by RC Kirk (Oct 19)

Hi Chrissie,
For what it's worth, most of my PCR tests have been at 3 month intervals.
Gleevec 400mg/day - 2014 000.174%, 000.088%, 000.064% 2015 000.049%
Gleevec 200mg
Category: Blood tests

Replies: 6

Last updated: 19 October 2018
Tbrand on 16 October 2018

Category: Blood tests

Replies: 1

Last updated: 16 October 2018

Best results
by RC Kirk (Oct 16)

Congratulations!

by Tbrand (Oct 16)

Diagnosed 1/2016, MMR 1/2017, .03 or so until last result from 07/2018 gotten today is .000 I feel great! Finally! On Imatinib.
Category: Blood tests

Replies: 1

Last updated: 16 October 2018
Poppert on 14 September 2018

Category: Blood tests

Replies: 14

Last updated: 15 October 2018

Is it ”safe” to rely only on PCR test?
by RC Kirk (Oct 15)

Hi David,
It sounds like you're eager to get back to work. You had mentioned you would be able to return when you have achieved a cytogenetic remission. I was curious what criteria will

by David83 (Oct 14)

Alastair/Sandy,
I wasn’t sure if Nilotinib was the chosen TKI for reasons I wasn’t aware of, or if it was just traditionally the second one tried if Imatinib failed. I’ll be sure to have a good chat

by sandy craine (Oct 14)

Hi David,
I agree with Alastair's suggestion that dasatinib (or even bosutinib) may be a better option for you given your working schedules as a pilot and the need to strictly adhere to the fasting

by AlastairC (Oct 13)

Hi David, I'm not really qualified to talk about nilotinib as an alternative for you - I've been lucky that imatinib worked for me and I have not had to learn about the other TKIs. Have you shared
Category: Blood tests

Replies: 14

Last updated: 15 October 2018
J. HY Wong on 14 October 2018

Category: Blood tests

Replies: 1

Last updated: 14 October 2018

Great results, but what next?
by sandy craine (Oct 14)

Josiah, congratulations on your optimal response to dasatinib (50mg) .... reducing further may be best kept for the future, when you are certain of the stability of your molecular response.

by J. HY Wong (Oct 14)

Three months in 50mg dasatinib, and the numbers are looking good!
19 June 23.3881%
21 July 9.5966%
07 September 0.4610%
Very excited, could be achieving MMR very soon. But my WBC counts remain low,
Category: Blood tests

Replies: 1

Last updated: 14 October 2018
gbatalha on 30 July 2018

Category: Blood tests

Replies: 15

Last updated: 1 October 2018

Imatinib apparent failure
by RC Kirk (Oct 1)

That's great news Gonzalo! Why did it take them so long to get your results to you? I can see why the two month wait was agonizing. Are you scheduled for another PCR test at your

by sandy craine (Oct 1)

Gonzalo, very good/wonderful news.. thank you for keeping this forum updated on your experience. I am sure you and your family are very much relieved and you can now see a future where you will

by AlastairC (Oct 1)

Gonzalo, Excellent news, delighted for you. Hope this puts your mind at rest.

Alastair

by gbatalha (Oct 1)

Dear all,
After two very long months I have finally received all the information from my bone marrow analysis (taken at 3/4 months).
Bone Marrow visual analysis - CML in remission
Mutation - None
Category: Blood tests

Replies: 15

Last updated: 1 October 2018
jason77 on 27 August 2018

Category: Blood tests

Replies: 10

Last updated: 1 October 2018

Rising FISH %
by Poppert (Oct 1)

Sounds like the right thing to do. I did a ”mutation analysis” too, I didn’t have to wait too long for the results. It seems your old doctor did a lot of strange things.

by jason77 (Sep 29)

Hey Scuba, He didnt prescribe a new med yet, wants the results first to make sure I dont have a T135 mutation. I asked about sprycel and he is receptive at starting on 70 mg and go from there. Thank

by scuba (Sep 29)

Did your new doctor start you on a new drug in the mean time?

by jason77 (Sep 28)

Saw the new Dr today and he has ordered a series of mutation tests and PCR. He was in disbelief that the old dr never tested for mutations or any follow up PCR since dx .I was dx last september and
Category: Blood tests

Replies: 10

Last updated: 1 October 2018
scuba on 18 September 2018

Category: Blood tests

Replies: 22

Last updated: 23 September 2018

"Undetected"
by Isla D (Sep 23)

I'm conjuring up an even smaller 10mg Sprycel tablet for you in my imagination Scuba so you could try 10mg per day for six months before quitting completely.
Also wondering about you getting your

by cmljax (Sep 22)

Thanks Scuba - thought this would be your answer. By the way, I listened in on part of the UK CML conference this morning, and the doc reporting on DESTINY results indicated that he thought

by scuba (Sep 22)

cmljax - He did not provide a source to me, just told me via email on the 5 years being best (instead of two).
He would consider PCR < 0.003% as the same as undetected. Any IS value < 0.01% is

by cmljax (Sep 22)

Scuba: Could you please share the source of your oncologist's data that shows that the length of being undetectable is an independent predictor of success in cessation attempt? Would he consider
Category: Blood tests

Replies: 22

Last updated: 23 September 2018
DawnD on 14 August 2018

Category: Blood tests

Replies: 50

Last updated: 3 September 2018

WBC level at diagnoses
by Chuckster (Sep 3)

Great Story!
Thank You Dennis!!

by Dennis (Sep 3)

Well that’s great DawnD.
if it helps others, that’s all I want.

by DawnD (Sep 3)

Amazing story of survival!!!!! Inspirational for a newbie like me!

by Chuckster (Sep 3)

Feb 12 2018- The day I was told by my Oncologist all tests verified I had CML: 19,800.
From March 2018 to Aug 22nd- latest blood test- decreased from 19.800 to 7,800. ( From 100mg then
Category: Blood tests

Replies: 50

Last updated: 3 September 2018
trusamandfive on 30 August 2018

Category: Blood tests

Replies: 16

Last updated: 3 September 2018

Six week PCR result
by sandy craine (Sep 3)

FISH/cytogenetics; Qualitative PCR; Quantitative PCR etc... is confusing for all of us but especially when newly diagnosed. I think you may find our downloadable Q-PCR booklet helpful.
Q-PCR Primer

by cmljax (Sep 3)

I think I love Romo too, but cannot agree with continuing a dishonest relationship with your oncologist. If he/she isn't up to date on the latest with respect to dose titration of TKI's, it is

by DawnD (Sep 1)

Love it!!

by trusamandfive (Sep 1)

Hahahaha Romo I think I love you, this made me laugh. Im glad your letting your Oncologist hold onto his genius dream. Mine looked concerned the other day when I had so much to say about
Category: Blood tests

Replies: 16

Last updated: 3 September 2018
Justine on 3 August 2018

Category: Blood tests

Replies: 27

Last updated: 29 August 2018

Amazing PCR result
by kat73 (Aug 29)

Can't wait to hear what he says, Justine! November will be here before you know it. Do give us a full report.

by Justine (Aug 29)

Appointment with Dr. Druker scheduled for early November. The scheduler said he sets aside two hours for a new patient visit. Two hours, imagine! Will let you know how it goes. As I've indicated

by Gitel (Aug 11)

Of course it makes more sense to have the BCR ABL available when one sees the Onc at the three month visits. That’s how I learned I was Imatinib resistant and needed To be checked for

by kat73 (Aug 10)

Yes, Gitel, I have indeed spoken up! I went up the chain of command to the top of IT. They assured me that everyone in the higher administration was aware of the problem and trying to
Category: Blood tests

Replies: 27

Last updated: 29 August 2018
Chuckster on 28 August 2018

Category: Blood tests

Replies: 8

Last updated: 29 August 2018

Lastest Blood Test Results: On 50MG of Sprycel Daily.
by Chuckster (Aug 29)

Hi!
Check with the lab that is drawing your blood/and testing.
Depending on what tests your Doctors/ Oncologist is ordering, you should request and receive a copy of ALL of your blood work/

by Felix (Aug 29)

Hi Chuckster ,great news on all your zeros well done. Everybody seems to get so much information about their blood results FISH ,PCR ,and every other abbreviation connected to CML .When I get

by LouiseS (Aug 29)

Great news Chuck ! Hope you are felling pretty much back to normal now :)
louise

by Chuckster (Aug 29)

Thank you very much to all!
*Re Vit B supplement +Iron etc. I will be seeing my oncologist today
I will ask about it as I already take a Multi Vitamin Suppl but it has no IRON in it.
Category: Blood tests

Replies: 8

Last updated: 29 August 2018
Stacey Doubblestein on 20 August 2018

Category: Blood tests

Replies: 7

Last updated: 24 August 2018

WBC count dramatically reduced 3 weeks on Gleevec
by LouiseS (Aug 24)

I think it’s good news when you don’t have an enlarged spleen. No spleen enlargement means your CML should be easier to treat ( or at least this was considered the case before second gen TKIs were

by Tbrand (Aug 23)

My spleen was normal, any idea why?

by Stacey Doubblestein (Aug 23)

My husband's is 13 cm beyond and his doctor explained that to mean two times it's normal size after his ultrasound and measurements

by MartinZA (Aug 21)

It took forever for my spleen to get back to normal - at least 3 months. I'm now almost three years in and still have discomfort in the spleen area. So don't worry! It is normal for this to take
Category: Blood tests

Replies: 7

Last updated: 24 August 2018
Syd822 on 8 August 2018

Category: Blood tests

Replies: 3

Last updated: 8 August 2018

Possible Cancer...
by Romo (Aug 8)

Normally a bone marrow test is ordered to determine
what “Type“, of Leukemia the patient has.
It also can assess the stage of that type of leukemia.
There are four types of leukemia. Each type

by Syd822 (Aug 8)

With the FISH test I only had to give blood for. She said that depending on the results from that then I would do the bone marrow aspiration. I am also uncertain if the results are done since she

by David Fitz (Aug 8)

Hi there,
It's a pretty scary time when you are not sure what's going on inside of you. We all understand that phase of things.
To me it looks like your doctor is running a number of tests to look

by Syd822 (Aug 8)

So a few months ago I went to my physician for a yearly check up and she does blood tests every year. When she did this blood test my Iron was low in which it showed that I was Anemic and my white
Category: Blood tests

Replies: 3

Last updated: 8 August 2018
Anonymous (not verified) on 26 July 2018

Category: Blood tests

Replies: 3

Last updated: 28 July 2018

Clarification on Quantitative and qualitative PCR
by Anonymous (Jul 28)

I'll ask my oncologist to order on the next PCR on both isoforms p210 and p190. It seems the safest path. Thanks

by alexmcpee (Jul 28)

Hi Silas,
My understanding is at diagnosis they only order checks for p210 which is the hallmark of CML. A coexistence is common for p210 and p190 and I believe the treatment and outcomes are the

by cmljax (Jul 27)

My oncologists orders the p190 PCR every time I have the p210 test done. I think it's overkill to do it every time, but I have to pick my battles and this is not one I care to wage. My

by Anonymous (Jul 26)

Hi people!
On March,15, after fews weeks feeling fever and nocturnal sweating, it was revealed a white blood count of 239 and hb 8,7. I started taken hydrea until March, 29 when the first
Category: Blood tests

Replies: 3

Last updated: 28 July 2018
Poppert on 21 May 2018

Category: Blood tests

Replies: 14

Last updated: 23 July 2018

Test result / stick with Imatinib?
by Poppert (Jul 23)

I had my 6 month appointment with the doctor today. I’m writing here what was said in case anyone finds it interesting in the future.
Amongst other things she said it was good that my blood values

by Poppert (Jul 9)

Blood values are back to normal (more or less) after a week’s Imatinib break. Hb 134, Lpk 3.9, thrombocytes 124 (best ever) and neutrophils 1.5. So back on Imatinib now.
Strange dip last week. Doc

by AlastairC (Jul 4)

Thanks David, that is news to me. It will be interesting to see if Poppert's levels have improved, but we won't know if it is the week off imatinib or an impact of the viral infection.

by David Fitz (Jul 3)

Alastair,
Transient, post-viral neutropenia is pretty common.
Here's a decent paper which discusses some of this. It doesn't go into great detail, but does state that viral load can cause a
Category: Blood tests

Replies: 14

Last updated: 23 July 2018
Dean on 22 July 2018

Category: Blood tests

Replies: 2

Last updated: 23 July 2018

Infection after cut
by kat73 (Jul 23)

Dean - I had a somewhat similar reaction to a serious, infected dog bite. I had some symptoms of infection, but curiously not others, like the pus you mentioned. In the hospital (11 days

by Romo (Jul 23)

It’s pretty clear that you got bit by a “Red Biting Spanish water spider”.
It might be some mysterious never before known bealeszbob.
Our maybe you should give it some time. It might be

by Dean (Jul 22)

I have been taking imatinib 400g since my diagnosis end jan 2018. I just went to spain on holiday. I went swimming and got a very small cut on my knee. I used disinfectant on the cut when it did not
Category: Blood tests

Replies: 2

Last updated: 23 July 2018
MJP on 10 July 2018

Category: Blood tests

Replies: 0

Last updated: 10 July 2018

Please forgive my rant - TSH and doc
by MJP (Jul 10)

I had thyroid cancer in 2000 and had my thyroid removed along with being given 150 mci of radioactive iodine. In April of this year I was diagnosed with CML.
When I first started
Category: Blood tests

Replies: 0

Last updated: 10 July 2018
nk_godvani on 7 July 2018

Category: Blood tests

Replies: 3

Last updated: 9 July 2018

2 years results
by Philiptibbs (Jul 9)

Thats great keep up the good work!

by nk_godvani (Jul 8)

Thank you very much for the reply...

by David Fitz (Jul 7)

They are excellent figures. An optimal result.
The evidence emerging is that if you remain in a similar position, and there’s no reason to think why you wouldn’t, that in some time in the future you

by nk_godvani (Jul 7)

Hello i am on Imatinib (400) since last two years. PCR at 15 month -0.090,

at 18 month-undetactable,

at 21 month-0.022,

at 24 month-undetactable. What about future prognosis. Pls
Category: Blood tests

Replies: 3

Last updated: 9 July 2018
kutsushita on 24 June 2018

Category: Blood tests

Replies: 5

Last updated: 25 June 2018

I cannot achieve MR4.0
by kutsushita (Jun 25)

Thank you for your history, Isla. Now I feel safer that others have pleteaus for long time like me.
Also thank you for the infomation of dose reduction. I think I am on the right truck, and would

by Isla D (Jun 24)

Here is my history in case it's helpful. I started on 100mg Sprycel and went to 50mg after the first six months.
Kat, I LOVE the fact that your BCR ABL level has decreased on 20mg. Very

by kat73 (Jun 24)

Yes, I stayed where you are for about two years and then started getting "<0.01" for a year and now 0.005 and 0.006. The latter two on 20 mg Sprycel.

by David Fitz (Jun 24)

Totally agree with this. 0.014% is a deep response and a very good place to be. There is absolutely no reason to do anything other than keep going on as before. We should not get obsessed with lower
Category: Blood tests

Replies: 5

Last updated: 25 June 2018