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Rayyana123 on 8 November 2022

Category: Blood tests

Replies: 4

Last updated: 1 December 2022

Taken Off Of SPRYCEL for two weeks Low white blood Counts
by Rayyana123 (Dec 1)

Thank you for responding! I have been on Sprycel for about six months. Its weird to me that it drop so low from the 75,000 . Now it is 3.26 and my doctor is giving me Neupogen innjections next week

by Rayyana123 (Dec 1)

Thank you for responding! My WBC is continuing to lower it is around 3.26 since I have been off medicine for a month. Now my doctor wants to put me on Neupogen to build my WBC back up. I am

by MartinZA (Nov 14)

Hi Rayyana123
I've been taken off my TKI (imatinib) for almost three months now because it was lowering all my blood counts (white, red and platelets). My situation is unusual because this

by ipmaki (Nov 9)

Hi Rayyana123. I've experienced WBC's on the order of 3 K/uL in the past on 100mg of Sprycel. The medication has always suppressed my WBC's and it tends to fluctuate somewhere
Category: Blood tests

Replies: 4

Last updated: 1 December 2022
cct121 on 20 October 2022

Category: Blood tests

Replies: 3

Last updated: 15 November 2022

BCR-ABL lab results after recovering from pneumonia
by cct121 (Nov 15)

Update about my results:
BCR-ABL was not detected at a detection limit of 0.00017%(IS)
Looking through the forum, ‘not detected’ results seem to weird people out a bit.
Does anyone know

by cct121 (Nov 3)

That's a relief to hear. I have my blood test next week with my follow up the week after, so if I can maintain 50mg/day, I think that'd be a great thing. Granted I was lucky enough to not

by alexmcpee (Oct 31)

Anything under MMR4 I am told is just noise of the test and a lot of bouncing can occur because of the lower level disease and the sensitivity of the test. They’re all effectively the same

by cct121 (Oct 20)

Hi guys,
Just wanted peoples experiences & opinions on whether my most recent lab results should be a cause for concern.
Quick backstory: I went abroad back in early August, and then suddenly
Category: Blood tests

Replies: 3

Last updated: 15 November 2022
snowman 35 on 8 August 2022

Category: Blood tests

Replies: 15

Last updated: 5 November 2022

Tfr has begun
by Sunny (Nov 5)

Good idea to reduce. With dasatinib less seems to be more, and you also lower the threat of having pleural effusion, so go for it, and good luck.
pigeon

by snowman 35 (Nov 5)

Hi every one!After tfr fail (bcr abl 0.013)I returned to sprycel 70mg and one month later I am back to undetected!So my next step is to reduce my dose to 50mg....

by snowman 35 (Sep 20)

Hi all!

I just had a phonecall with my doc.I wanted to tell him if we could reduce dose 70mg to 50mg.

He didn't remember that the last 9 months before trying tfr I was taking 70mg and

by snowman 35 (Sep 18)

This exactly what I am planning to do Scuba!It is going to be difficult cause my doc is not a fun of reducing the dose.....

The only concern I have right now is if the pcr after one month in
Category: Blood tests

Replies: 15

Last updated: 5 November 2022
myraebora22 on 4 November 2022

Category: Blood tests

Replies: 1

Last updated: 4 November 2022

CML
by hannibellemo (Nov 4)

Hi, myraebora22. Knowing your country would help tremendously in determining medication aid. 🙂 Imatinib does have a generic version now - something that might be helpful. Mark Cuban's Cost Plus

by myraebora22 (Nov 4)

Good day.
My husband is 50yrs old diagnosed CML Last January 2020.
His prescribed medicine and maintenance is Imatineb. It is very costly. I need help for his continuous medication .
Thank you.
Category: Blood tests

Replies: 1

Last updated: 4 November 2022
Rocky Mountain Gal on 3 October 2022

Category: Blood tests

Replies: 4

Last updated: 11 October 2022

Cost of Vitamin D test
by Rocky Mountain Gal (Oct 11)

He was VERY annoyed to find out that they wouldn't pay stating "that's ridiculous, it costs them pennies to run a vit D test". He's on it!

by Buzzm1 (Oct 3)

your doctor should be the one to argue for you.

by Rocky Mountain Gal (Oct 3)

I would be happy to pay $15, mine came back at $250. That's an out of pocket expense, hoping to get insight on how to get my insurance to pay for it.

by Buzzm1 (Oct 3)

In the U.S., a vitamin D test will likely cost you between $15 and $263.
Category: Blood tests

Replies: 4

Last updated: 11 October 2022
Taper11 on 3 October 2022

Category: Blood tests

Replies: 0

Last updated: 3 October 2022

FISH vs PCR Test Results
by Taper11 (Oct 3)

I've been taking 100mg Dasatinib for a little over a year. I had a 2nd bone marrow biopsy at 12 months due to two rising PCR results at 9 and 10.5 months that showed no mutations.
3 month - 2.4
Category: Blood tests

Replies: 0

Last updated: 3 October 2022
snowman 35 on 15 August 2022

Category: Blood tests

Replies: 6

Last updated: 29 September 2022

Supplements
by amarullio (Sep 29)

What tests do I take to find out what vitamins I lack in my body? Is there a possibility to get a more precise answer and not only “when you feel bad – take…” or do I just

by snowman 35 (Sep 19)

What can I say David.....

Imagine that when I asked him I was in the first days of my treatment....scared and confused....I would not drink even water if he would told me so🤪

by David Fitz (Sep 17)

Honestly, that sounds like a doctor who either doesn’t know what they are talking about or more likely finds it easier to say “no, don’t take supplements” than actually give

by snowman 35 (Sep 9)

Asked my doc at the first day if I could take protein and he told me not to because often interact with tki,but I 've read twice or three members arr taking whey protein and had no issues......
Category: Blood tests

Replies: 6

Last updated: 29 September 2022
Tedro on 7 September 2022

Category: Blood tests

Replies: 1

Last updated: 7 September 2022

BCR/ABL1 % (PCR)
by AlastairC (Sep 7)

Hi. There is inherent variability in the test process, so individual results can vary from test to test. 0.0032% (widely used as a limit of detection) is one cell in a little over 30,000. At

by Tedro (Sep 7)

Hi,
Just to be certain:
If someone is eligible to go TFR, with monthly PCR monitoring…
The BCR/ABL1 % from a PCR can go up or down WHILE OFF medication… it seems strange to me that it
Category: Blood tests

Replies: 1

Last updated: 7 September 2022
MomOfCML on 14 July 2022

Category: Blood tests

Replies: 3

Last updated: 18 August 2022

Parent of 19 year old with CML looking for input
by An (Aug 18)

Maybe if the pcr value decreases ask if dose reduction is possible,maybe that will solve the issue.

It must be hard for your son during teen years to deal with this especially when friends are

by MomOfCML (Aug 18)

Thank you so much for your response.
Since my last post, my son has had an ultrasound on his liver and pancreas, a few other blood tests and switched to Imatinib. The ultrasound came back clear. His

by ColoradoGuy (Jul 15)

It is just as you have said there can be increases in liver enzymes. When it has happened to me in the past we wait to the next test (3 months) to see if it is of concern. It has both

by MomOfCML (Jul 14)

Hello All,
Three months ago, my 19 year old son was diagnosed with CML in the chronic stage. Of all the sources of information I've found, this support group has provided me with the most
Category: Blood tests

Replies: 3

Last updated: 18 August 2022
Mary Babbs on 12 August 2022

Category: Blood tests

Replies: 13

Last updated: 15 August 2022

Poor response to TKI'S ?
by Norma_55 (Aug 15)

Hi Sandy
I forgot to add I’d been doing a lot of heavy duty work on my garden From May to early July.

I started in a May but had to stop for a couple of weeks because

by Norma_55 (Aug 15)

Thank you for your reply, I’ll ask my GO for this test.

by Norma_55 (Aug 15)

Thank you for your reply, I’ll ask my GO for this test.

by Norma_55 (Aug 15)

Thank you
yes my hair has been affected, Should I start back on the high D3 dosage?
at the moment I’m having horrendous problems with low back discs and hip I’m seeing a
Category: Blood tests

Replies: 13

Last updated: 15 August 2022
gdesposito on 5 August 2022

Category: Blood tests

Replies: 2

Last updated: 9 August 2022

Cause for concern?
by gdesposito (Aug 9)

Thank you. Yeah that’s the trick, trying find that sweet spot, keeping you in MMR or better while maintaining blood levels.

by ColoradoGuy (Aug 7)

Not much difference in these two results. I would consider regular bounce. It is great news that you are trending down overall. I would keep a close eye on blood levels and use the minimum mg TKI

by gdesposito (Aug 5)

First time posting

Diagnosed 9/2/2020
BCR-43.66% Started on Tasigna 600mg/day
stopped on 12/24/20 due to elevated liver enzymes, low WBC and low platelets(29,000)
started on
Category: Blood tests

Replies: 2

Last updated: 9 August 2022
Rocky Mountain Gal on 23 July 2022

Category: Blood tests

Replies: 1

Last updated: 6 August 2022

Fasting and CBC draw
by JoeP (Aug 6)

I used to fast a lot. It seemed to help even before a blood draw. But not sure the results are definitive with fasting. For one thing I know when I did fast under imatinib it actually was not good

by Rocky Mountain Gal (Jul 23)

I am finishing a 3 day fast today. Not as bad as I thought! Question: Should I go in for my blood draw before or after I break my fast?
Category: Blood tests

Replies: 1

Last updated: 6 August 2022
Batman0424 on 25 July 2022

Category: Blood tests

Replies: 1

Last updated: 26 July 2022

Low Counts?
by alexmcpee (Jul 26)

MartinZA who posted a similar question on here is in a similar position with all of a sudden low counts although as far as I know his BCR is still ok - your wife is no doubt having a 2nd biopsy

by Batman0424 (Jul 25)

Hello,
My wife was diagnosed with CML in November 2019 and has been on dasatinib since. Her counts have always been low, but recently her dr's office has suggested that a bone marrow
Category: Blood tests

Replies: 1

Last updated: 26 July 2022
vineet on 15 July 2022

Category: Blood tests

Replies: 3

Last updated: 25 July 2022

observed immature granulocytes cell(0.2%) in blood report achived mmr 9 months ago
by Tater1 (Jul 25)

Hi. I have had higher immature granulocyte counts periodically and when asked my Dr responded that they see these numbers come up in many patients from time to time. He emphasized that

by MartinZA (Jul 25)

Hi there
I'm not a doctor so don't want to say too much about the immature granulocytes except that I thought these were associated with inflammation, not leukaemia (I thought they are

by An (Jul 17)

Isn't immature granulocytes and basophils within range?if hb is low rdw will be low.

by vineet (Jul 15)

hi all , i am cml patient in sept 2019,my recent bcr abl test was on may-22 last week and i was in mmr (0.04 IS scale).i am on dasatanib. my wife asked me to do full body
Category: Blood tests

Replies: 3

Last updated: 25 July 2022
ishb1 on 28 April 2021

Category: Blood tests

Replies: 2

Last updated: 16 July 2022

How do you read your BCR test/transcript?
by Reilly9108 (Jul 16)

My number is .17
p190 .17
p210 negative
is negative and undetected mean the same thing

by RC Kirk (May 1)

Sounds like normal CML. Here's what my report said at diagnosis: "p210 transcript b3a2 and b2a2 118.683% IS (88.57%), p190 transcript e1a2 0.01%"
My report didn't separate the b3a2

by ishb1 (Apr 28)

Doctor ordered a BCR ALB1 Tests and it has examples of
B2A2 Transcript
B3A2 Transcript
Do you all know how to Interpret the results? for instance, it gives me a percentage by each transcript.
Category: Blood tests

Replies: 2

Last updated: 16 July 2022
Reilly9108 on 14 July 2022

Category: Blood tests

Replies: 0

Last updated: 14 July 2022

BCR ABL1 Results How to Interpet
by Reilly9108 (Jul 14)

Hello
Looking for a answer ..I was Negative for 1 1/2 year now last Lab results 7/5/2022 shows e14a2 b3a2 results 0.1714 positive
e13a2 b2a2 Negative
What would make part of this
Category: Blood tests

Replies: 0

Last updated: 14 July 2022
beero on 16 July 2021

Category: Blood tests

Replies: 6

Last updated: 7 July 2022

18 months - PCR increase
by JoeP (Jul 7)

If you are consistently getting at least 2 zeros after the decimal after only 18 months I would say you are doing stellar. And that’s on Imatinib? I was 11 years on that and reached .003 once

by beero (Jul 7)

I have the update on this after my latest test couple of days ago.
After the "negative" (under 0.0032) result 6 months ago, I again received a "suspicious" result - 0.0030.
The

by Nimbus2 (Jan 13)

I notice in my own case that I have 10 BCR::ABL1 cells in 39,106 copies of ABL1, i.e. 10/39,106 x 100 x 0.6 [laboratory correction for IS] = 0.0153%
I am still in MR3.
I would need, as I see it, to

by beero (Jan 12)

Hello guys,
I owe you an update on this thread. Just got the message from my doctor and my latest BCR-ABL says undetectable.
However, it doesn't really mean I've got a lower result than last
Category: Blood tests

Replies: 6

Last updated: 7 July 2022
snowman 35 on 25 June 2022

Category: Blood tests

Replies: 6

Last updated: 26 June 2022

Creatinine levels
by snowman 35 (Jun 26)

By drinking more water levels went down!sometimes close to normal range sometimes higher(mostly in hot days)but definitely lower than if was drinking less....

by snowman 35 (Jun 26)

I am not on imadinib....all the tests and the ultrasound was perfectly normal!

by wshi2001 (Jun 26)

By the way, its got nothing to do with drinking more water. My doctor said the same thing, drink more water, I tried, and did not make any difference, it's the drug's side effect.

by wshi2001 (Jun 26)

hi, when I was on Imatinib, I had the same problem. When I changed to Tasigna, it settled down. I read some article suggesting there was cases that imatinib causing kidney damages
Category: Blood tests

Replies: 6

Last updated: 26 June 2022
Taper11 on 4 June 2022

Category: Blood tests

Replies: 2

Last updated: 6 June 2022

BCR ABL Increase at 9 Mts
by Taper11 (Jun 6)

Thanks for putting this in perspective Alex, I really appreciate it.

by alexmcpee (Jun 4)

Don’t ever apologise. We all have to air our concerns wether repeated or not, it’s part of our mental healing as much as it is our physical healing.
This thing can bounce around like a

by Taper11 (Jun 4)

Apologies for creating a thread when I know there's so many others on this topic, but I am just looking for some reassurance.

I've been taking 100mg dastinib since September
Category: Blood tests

Replies: 2

Last updated: 6 June 2022
EvaH on 9 May 2022

Category: Blood tests

Replies: 6

Last updated: 15 May 2022

Back in TFR - happy days!
by Sav_5 (May 15)

Great news EvaH!!

by Sherley (May 10)

That’s great news!

by Sunny (May 9)

Lovely news EvaH. With so much bad news nowadays, nice to hear good news for a change.
All the best,
pigeon.

by Buzzm1 (May 9)

Happy for you Eva!
Buzz
Category: Blood tests

Replies: 6

Last updated: 15 May 2022