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bendicco on 19 November 2019

Category: Blood tests

Replies: 2

Last updated: 19 November 2019

Should I worry?
by bendicco (Nov 19)

Thank you Kat! Thank You!

by kat73 (Nov 19)

Major molecular response (MMR, or MR3) is 0.1. You are a couple of logs' worth beyond (below) that, congratulations! In many labs, your number would not even be reported - they would

by bendicco (Nov 19)

Hi all. I see a doc at Sloan in NY . Six months ago my CML bloods registered 0.002 then three months ago it was not detectable. I was so excited! Had my bloods drawn again last week and just
Category: Blood tests

Replies: 2

Last updated: 19 November 2019
slindon2 on 9 November 2019

Category: Blood tests

Replies: 2

Last updated: 11 November 2019

BCR/ABL after 4 years
by slindon2 (Nov 11)

David
Thanks for your quick response. I am on 100mg Dasatinib. I take no other medication prescribed or over the counter. I havent had a cold or flu for about 6 years. The only thing i have

by David Fitz (Nov 10)

Hi Paul,
There are quite a few forum members who took many years to reach MMR, and many others too who have got close but never quite got there. I recall a seminar with a CML specialist and his view

by slindon2 (Nov 9)

Hi all
its been a while since i looked for some advice so here goes...
Im coming up for 4 years since diagnosis.
After 2 years on Imatinib I went resistant, I should have been changed to
Category: Blood tests

Replies: 2

Last updated: 11 November 2019
vholly on 25 October 2019

Category: Blood tests

Replies: 3

Last updated: 9 November 2019

Rising BCR-ABL
by Amackerness (Nov 9)

The same thing has happened to me gone up to 0.026 from 0.009. First increase and being 're tested next month I have felt so much better and I really don't want to change medication.

by vholly (Oct 30)

Thank you kat73 - great to have reassurance from you. Much appreciated!
victoria.

by kat73 (Oct 25)

Absolutely of no concern whatsoever. Completely statistically insignificant. Well within lab error range, sample error range. As Scuba likes to call it, the "noise" of

by vholly (Oct 25)

Hi all,
apologies for repeating a common thread but I can’t find info that contains similar numbers to mine so I want to put a question out there.
I’m just over 2 year since diagnosis -
Category: Blood tests

Replies: 3

Last updated: 9 November 2019
Nshah on 23 October 2019

Category: Blood tests

Replies: 27

Last updated: 27 October 2019

New CML
by Nshah (Oct 27)

Happy Diwali and happy new year to You too.

by Vikram (Oct 27)

Happy diwali and Happy new year.....
Skin whiting.... Problem side effects of IMTINIB......
After 2-3 year diagnosis
Skin whiteing problem normal... (normal skin less whiteing.....)
Don't worry

by Nshah (Oct 25)

Yes exactly.

by Vijay Kumar Verma (Oct 25)

In the word of SCUBA even Cml is boon for us not bane,when we deeply see our underlying health (physical &psycological) issues in relation with cml then we come to realise that it is a message
Category: Blood tests

Replies: 27

Last updated: 27 October 2019
Mixail on 16 October 2019

Category: Blood tests

Replies: 4

Last updated: 18 October 2019

Has anyone seen this article from October 15th. Is this be real. Thank you.
by Mixail (Oct 18)

I have not any more about it.

by Vikram (Oct 18)

Miristen drug...... Any news and updates...?????
Only hope???
No update in internet
No news.........

by Mixail (Oct 16)

Thank you David.

by David Fitz (Oct 16)

Not necessarily not “real” - but it’s a mouse study, so a long way away from common in clinic.
All the same, there are upcoming trials that will look to combine other drugs (
Category: Blood tests

Replies: 4

Last updated: 18 October 2019
lupus on 16 October 2019

Category: Blood tests

Replies: 2

Last updated: 16 October 2019

Understanding my PCR results
by David Fitz (Oct 16)

If your doctor is not being helpful, just ask for a copy of the lab report. You’re entitled to it and it will tell you what you need to know and we can help you interpret it.
David.

by RC Kirk (Oct 16)

Hi Tomas,
It might be helpful for you to get copies of your BCR/ABL1 PCR reports. If you're correct and your three month PCR score was 1.4% IS (International Standard), then you're

by lupus (Oct 16)

Hello everyone,
could you please help me understand my pcr results as my physician is kind of enigmatic about this particular matter. Today (after 4 months), I finally succeded in convincing (we had
Category: Blood tests

Replies: 2

Last updated: 16 October 2019
Aeje10327 on 11 October 2019

Category: Blood tests

Replies: 2

Last updated: 15 October 2019

Neutropenia when starting gleevac
by kat73 (Oct 15)

Yes, a lot of us get that low, and some of us stay there. If it drops down to .5 the docs begin to get nervous. When I was on Gleevec, it took me some months (and a couple of breaks,

by Crfharris (Oct 12)

My neutrophils dropped to 1.3 after 30 days on imatinib. Doctor said they didn't want to see it drop below 1 and this was not unusal. He wasn't sure if it had already dropped to the lowest

by Aeje10327 (Oct 11)

I have been on 400 mg of gleevac for around a month. I just went for follow up and my WBC count was 1, 0% neutrophils. I know people have mentioned that their counts dropped when first starting
Category: Blood tests

Replies: 2

Last updated: 15 October 2019
MANNI OBEROI on 4 October 2019

Category: Blood tests

Replies: 5

Last updated: 5 October 2019

Cml is genetic or not
by MANNI OBEROI (Oct 5)

Thank u very much

by David Fitz (Oct 5)

When your CML is under control, there’s nothing you can’t do. Including marriage and children!
CML is caused by a genetic mutation in your bone marrow. You weren’t born with

by scuba (Oct 4)

Yes - you can get married. You can have children. They will grow up and be successful.
CML is a bone marrow stem cell disease involving a mutation of blood stem cells. Having children involves

by MANNI OBEROI (Oct 4)

David I didnt understand it is genetic but not pass to children's.......please suggest me may I go for marriage or not
Category: Blood tests

Replies: 5

Last updated: 5 October 2019
koralia.pappi on 12 September 2019

Category: Blood tests

Replies: 17

Last updated: 5 October 2019

I just joined the CML community! Q on CHR
by VickyK. (Oct 5)

Great!By the way I love Thessaloniki 😊😊My husband is from Thessaloniki and we are visiting once or twice a year!
Let's keep in touch!

Vicky

by koralia.pappi (Oct 5)

Hi Vicky,
I'm in Thessaloniki. My doctor is Eleni Poumpouridou, at St. Loukas Hospital.
To my knowledge, there are two labs certified in Greece for MR4.5 and IS, one is in ΕΚΠΑ, Athens,

by VickyK. (Oct 5)

Hi Koralia!

Yes correct the lab is at Michalakopoulou 176.My doctor is at Alexandra hospital and his name is Evangelos Terpos.What about you?

Best,

Vicky

by koralia.pappi (Oct 5)

Hi Vicky,
By the way, which doctor are you visiting in Athens? And I guess your PCR is done by ΕΚΠΑ (Dr. Panagiotidis' lab), right?
Regards,
Koralia
Category: Blood tests

Replies: 17

Last updated: 5 October 2019
VickyK. on 4 October 2019

Category: Blood tests

Replies: 2

Last updated: 5 October 2019

PCR Result after one year
by VickyK. (Oct 5)

Thank you very much Koralia!

by koralia.pappi (Oct 5)

Great results Vicky! Congratulations!

by VickyK. (Oct 4)

Hi all!

I am so happy today and just wanted to share with you that after one year on nilotinib I went down to MR4.5!I send all my good energy to all of you!

Best

Vicky
Category: Blood tests

Replies: 2

Last updated: 5 October 2019
rsgiles on 24 September 2019

Category: Blood tests

Replies: 12

Last updated: 26 September 2019

Rising PCR test
by rsgiles (Sep 26)

Ok thank you so much. My doctor that I’ve had from the beginning in 1998 retired. I still speak to him and take him out fishing once in a while and it has been years since he retired. He

by kat73 (Sep 26)

I think you're probably all right. (One thing you can count on is that there is no significant difference between the 14 and the 26.) The worry comes in as to trend, but probably

by rsgiles (Sep 26)

I am still taking gleevec and I don’t think the test changed. The only thing I did notice was that it only had the number for the international scale and that was 0.0026%. The test before this

by AlastairC (Sep 26)

Good call Kat - I've seen a number of these type of posts over the years when a lab has a new more sensitive test system and results appear to be increasing, but it is just the shiny new kit
Category: Blood tests

Replies: 12

Last updated: 26 September 2019
thomas.c on 23 September 2019

Category: Blood tests

Replies: 2

Last updated: 23 September 2019

1.3 log increase on dasatinib after mr4.5
by Felix (Sep 23)

Hi Thomas, you had an infection that could do it .I have had an infection twice ,an infected insect bite and a scratch on my ankle from a bramble.I left them for a few days to see if they would get

by AlastairC (Sep 23)

Hi Thomas, there are a few posts a year like yours where PCR results seem to take a big jump. Many of them prove to be an anomaly in the test process and the next result goes back to the previous

by thomas.c (Sep 23)

Hello everyone,
I was hoping to ask for your opinion... i am 33 yo, and have been undergoing treatment with 100mg dasatinib for the past 2 years. My cml was noticed quite early. Everything went
Category: Blood tests

Replies: 2

Last updated: 23 September 2019
Felix on 19 September 2019

Category: Blood tests

Replies: 5

Last updated: 21 September 2019

Can any one help with this please
by Snowman35 (Sep 21)

had happened to me exactly the same thing! There is absolutely no reason to worry about!! For some reason your blood didn t stored properly so they couldn t do pcr... Nothing to worry about!

by Felix (Sep 19)

Haha David ,my words exactly and a few more expletives.This is happening at a hospital which is supposed to be excellent with experts and not my local one ,very annoying .

by David Fitz (Sep 19)

All it means is that the lab testing process fucked up. That's it. Seems it's not the first time!
As you say, the bit of anxiety this can cause is that you go a bit longer between test

by Felix (Sep 19)

Hi David ,thank you so much for your explanation ,a lot of it has gone over my head,as I never get much information from my Doc , but you have sort of put my mind at rest .This test was done at the
Category: Blood tests

Replies: 5

Last updated: 21 September 2019
Chuckster on 12 September 2019

Category: Blood tests

Replies: 1

Last updated: 13 September 2019

FISH Test Results.
by scuba (Sep 13)

No surprise.
Good news.

by Chuckster (Sep 12)

Fish Results: 1.5%
Down 1 % from 2.5% on July 19th.
Just came back from my Oncologist appt.
Staying on 20 MG of sprycel for another cycle ( 60 Days) as she is ok with this as its a downward
Category: Blood tests

Replies: 1

Last updated: 13 September 2019
jane heather ne... on 3 September 2019

Category: Blood tests

Replies: 10

Last updated: 11 September 2019

Imatinib 400mg disappointing response
by jane heather newberry (Sep 11)

Thankyou all for taking the time to reply. Hopefully i will see a better result next time. Best wishes to you all. Jane

by AlastairC (Sep 4)

yes sorry, blasts at 0 is good!

by scuba (Sep 4)

Blasts at zero at your early stage is excellent. It suggests Imatinib is likely doing its job and as several people wrote above, many so-called "slow" responders do just fine and end up

by kat73 (Sep 4)

Think you meant, "glad to see your blasts ARE at zero"?
Category: Blood tests

Replies: 10

Last updated: 11 September 2019
Chuckster on 5 September 2019

Category: Blood tests

Replies: 4

Last updated: 8 September 2019

Latest Blood Test Results BCR/ABL1 .
by Chuckster (Sep 8)

Thank You Sarah!

Chuck.

by Sarah63 (Sep 8)

Bravo! It really seems the 20mg is working quite well.

by Chuckster (Sep 5)

Thanks David!
All tests are blood including the FISH.
Had 1 bone marrow/bone extraction and thats more than enough for that test under local anesthesia thank you very much! LOL!
Should get

by David Fitz (Sep 5)

Hey Chuck - that’s a great result in that timeframe. Looks like that 20mg dose might suit you well!
Don’t get hung up about non detectable. All you’re looking for is a nice sloping
Category: Blood tests

Replies: 4

Last updated: 8 September 2019
Chuckster on 30 August 2019

Category: Blood tests

Replies: 2

Last updated: 30 August 2019

Blood Test
by Chuckster (Aug 30)

Thanks Scuba!

by scuba (Aug 30)

Look forward to seeing your results. I am optimistic for you!

by Chuckster (Aug 30)

Just had blood drawn this morning from LAB CORP.
Four tests: WBC .CMP, FISH(IS) and ABL/BCR Quantatative PCR etc..
Will post results in the next week or so when they come in.
Category: Blood tests

Replies: 2

Last updated: 30 August 2019
Chuckster on 25 July 2019

Category: Blood tests

Replies: 0

Last updated: 25 July 2019

New blood Test Results: What does this mean?
by Chuckster (Jul 25)

Switched labs from Quest Diag. to Lab Corp:
Last 3 results from Quest were all 0.000 not detected both on FISH and BCR/ABL1 etc.
Now these new results from Lab Corp:
b2 a2 IS %: 1.146
b3
Category: Blood tests

Replies: 0

Last updated: 25 July 2019
Koncho tsering on 15 July 2019

Category: Blood tests

Replies: 17

Last updated: 23 July 2019

My father diagnosed with CML
by Koncho tsering (Jul 23)

My doctor said if the haemoglobin falls further next week then we'll need to do a blood transfusion in order to increase the level of haemoglobin in blood. However I don't know how long the hgb in

by Koncho tsering (Jul 23)

My doctor said if the haemoglobin falls further next week then we'll need to do a blood transfusion in order to increase the level of haemoglobin in blood. However I don't know how long the hgb in

by scuba (Jul 22)

If he takes Veenat with food (bread / oatmeal), he will likely not have any nausea.
I took Gleevec back in the day in the middle of a meal, not at the beginning or end.

by Gian P (Jul 22)

My doctor says that is the drug that cause the hgb to go down and that causes fatigue etc, she insists that food won’t do much, but i try eating enriched Iron food as often as i can, and
Category: Blood tests

Replies: 17

Last updated: 23 July 2019
Gian P on 18 July 2019

Category: Blood tests

Replies: 4

Last updated: 19 July 2019

1 year Anniversary and my BCR ABLE not undetectable yet
by Gian P (Jul 19)

Thank you again,
i will make sure to talk to her about these other TKI drugs and see where it takes me.
thank you.

by ColoradoGuy (Jul 19)

Correction 10% is early molecular response not PCyR. I switched from dasatinib because I could not reach 0.1 and then went up to 1.2. It is trending back down on Tasigna thank God (0.36 last

by Gian P (Jul 19)

Thank you,
my Onc is not as worry as i am, but today i told her and she insists on keep doing CBC weekly and CBR abl monthly to monitor any changes, she mentioned a possible Bone Marrow transplant

by ColoradoGuy (Jul 19)

I don't know your history regarding mutation testing and other TKIs but I would imagine that changing TKI would be in order more importantly than changing doctor. I think going above 10 is defined
Category: Blood tests

Replies: 4

Last updated: 19 July 2019