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Lisalater35 on 12 December 2020

Category: Blood tests

Replies: 14

Last updated: 14 December 2020

Just diagnosed with cml
by Lisalater35 (Dec 14)

You all are so great. It definitely is scary but I am not alone. I met some wonderful people to help me through this. I Am actually talking to the Dr who invented Gleevics and he also has made me

by Faith_05 (Dec 14)

Hello Lisa and I'm sorry for your diagnosis.
Obviously you caught it too early!!I was diagnosed in March 2020 and also had low WBC. It was 20,000 and my platelets were 305,000. I'm taking

by koralia.pappi (Dec 13)

Hi Lisa,
Don't freakout about low WBC, it's actually a good sign, means that you got it early. Indeed as Alex said, most CMLers get a DX on high numbers, but I also found out with relatively low WBC

by Lisalater35 (Dec 13)

Thanks Richard,
highest my platelets ever got was 670, which btw when I got my BMB the platelets had dropped to 520. WBC highest was 21,000 and dropped to 15,000. My blood work 3 yrs ago showed
Category: Blood tests

Replies: 14

Last updated: 14 December 2020
aliensheep0 on 18 November 2020

Category: Blood tests

Replies: 11

Last updated: 21 November 2020

10% increase in BCR-ABL iS%
by chrissie (Nov 21)

My Vit D was very low but don't know exactly how low. My GP prescribed 1000Iu Vit D3 daily which I have been taking for more than one year. I also managed to sit in the sun this summer for the

by aliensheep0 (Nov 20)

I'll have to double up on that vitamin D3 supplement I bought then.

by scuba (Nov 20)

22 is very low. When I tested that low, I took 10,000 IU's every day for 3 weeks. That barely put me above 50 ng/ml. I now alternate 5,000 one day, 10,000 the next (in winter) and hover around

by aliensheep0 (Nov 20)

My vitamin D is a little low, at 22. So I started taking a vitamin D supplement at 5000iu 2 days ago. my regular multivitamin already includes 2000iu
Category: Blood tests

Replies: 11

Last updated: 21 November 2020
sandy craine on 16 November 2020

Category: Blood tests

Replies: 2

Last updated: 18 November 2020

Vit D3 levels/measurement
by scuba (Nov 18)

Hi John,
I maintain my vitamin D level around 170 nmol/L. - which is equivalent to 70 ng/ml.
60 nmol/L is insufficient for viral and cancer protection. Here is a handy conversion tool:

http://

by johnw1001 (Nov 18)

Hi Sandy,
Thanks for posting this;it is very useful and perhaps very timely as winter is approaching and we have much less UV light to take in outdoors.
At the beginning of the year I was found to

by sandy craine (Nov 16)

Some useful information here on different measurements used for assessing D3 status. Understanding the difference between nmol/L and ng/ml is important... see the link below for a conversation
Category: Blood tests

Replies: 2

Last updated: 18 November 2020
MJP on 11 November 2020

Category: Blood tests

Replies: 1

Last updated: 12 November 2020

Finally
by alexmcpee (Nov 12)

When you say finally I thought you meant you’d been on this path for many years. 29 months to undetected is exceptional and should be celebrated I certainly would. It’s taken me this

by MJP (Nov 11)

After 29 months, I have my first undetected result. Currently on 70mg dasarijin. Started on 100 for about 18 months. Hoping to convince my Dr to take me to 50.
Category: Blood tests

Replies: 1

Last updated: 12 November 2020
Sueso on 25 September 2020

Category: Blood tests

Replies: 4

Last updated: 27 September 2020

My selenium is very high
by Sueso (Sep 27)

Thank you for the information.

by scuba (Sep 26)

I would not be surprised if the Brazil nuts are the cause of your higher selenium - and that could be a good thing. But to put your fears at ease - 240 ng/ml is not overly high, and in some labs it

by Sueso (Sep 26)

I`m not taking any supplements ,I asked my doctor if I can take selenium supplement because that she order the blood test for me.
I used to eat 3 piece brazil nuts daily but I stopped on Marsh

by scuba (Sep 25)

Are you taking any selenium supplements or eating foods rich in selenium? (e.g. Brazil nuts)
Category: Blood tests

Replies: 4

Last updated: 27 September 2020
johnw1001 on 23 September 2020

Category: Blood tests

Replies: 4

Last updated: 25 September 2020

RDW Values-in CML and now in Covid
by sbp03 (Sep 25)

Higher levels of RDW (and low levels of haemoglobin) might be associated with Thalassemia. As such genetic condition also increases the ferritin levels, usually it is not recommended iron

by Vijay Kumar Verma (Sep 25)

I have always high RDW and even after 37 months my Pcr 0.126%(IS).so I can correlate the link between high RDW & high Pcr,and difficult to reach Mmr. I will be happy if anyone can shed more

by johnw1001 (Sep 24)

Thanks for the reply and your data.
I have come across reports that use of imatinib might lead to less red cell production and modification to some of the specific counts that we have discussed such

by Nimbus2 (Sep 24)

Hello John
I may very well be in the same position as you with anaemia.
My RDW is within range.
My consultant tells me that she concentrates normally upon four markers: haemoglobin, white blood
Category: Blood tests

Replies: 4

Last updated: 25 September 2020
KingBurger on 24 July 2020

Category: Blood tests

Replies: 25

Last updated: 17 September 2020

New to CML
by Praveen (Sep 17)

Papaya leafs juice increases my platelets count from 1.13 to 1.28 in one week. It’s effective

by KingBurger (Sep 14)

Hi all,
Thanks again for all the comments. Just an update. My side effects have mostly dissipated at this point on Tasigna and I just got back my BCR/ABL for 1 month on the drug (if you recall I was

by philmc (Jul 27)

I'm on 100mg Dasatinib. I seem to be tolerating it right now, and as I say I don't know my latest BCR-ABL result yet, so I haven't fought to lower the dose or anything like that. After

by KingBurger (Jul 27)

Sounds like we are in a very similar boat. Will be curious to hear about your response to Dasatinib. What dose are you taking?
Spoke to my doc this morning and he wants to to take 3 days off of
Category: Blood tests

Replies: 25

Last updated: 17 September 2020
CdnCML on 15 September 2020

Category: Blood tests

Replies: 2

Last updated: 15 September 2020

Low Platelets after nearly 2 years on Dasatinib?
by snowman 35 (Sep 15)

My platelets were 140-150 then I started eating beetroots and went around 170+190...Now without eating constantly beetroots are I'm normal range(170-200)....

by CdnCML (Sep 15)

Should mention that all my other levels (wbc, rbc, etc.) are within normal range and I feel fine physically. Nothing has changed or jumped or fallen in the last few months except for platelets.

by CdnCML (Sep 15)

Hello,
Diagnosed in November of 2018, I've had a relatively smooth journey with CML. Was put on 100mg Dasatanib following diagnosis. My platelets were lowish (always hovering around 100) but the
Category: Blood tests

Replies: 2

Last updated: 15 September 2020
ShawnJ on 9 September 2020

Category: Blood tests

Replies: 5

Last updated: 10 September 2020

PCR Increase
by alexmcpee (Sep 10)

Ahh that’s really good news! Yes it’s something we all have to learn I freak out as much as the next person I kind of want to save my worries for a time when/if I need to worry and as I

by ShawnJ (Sep 10)

Update
The doctor called me and explained to me that the lab was mistakenly reporting the p190 transcript and should only be reporting the p210. He had the lab re-chart my results since diagnosis

by Lucas (Sep 10)

Hey, Shawn! The same thing happened to a patient here in Brazil and it wasn't anything to worry about. He's still in remission (PCRU) and have no other problem. Just to be on the safe side,

by ShawnJ (Sep 10)

Alex,
Thank you for the reply.
I have searched the far reaches of the web to see if I could find something where the P190 jumped like that in a test result, there isn't much of anything out
Category: Blood tests

Replies: 5

Last updated: 10 September 2020
Faith_05 on 22 July 2020

Category: Blood tests

Replies: 20

Last updated: 9 September 2020

New to all these
by Faith_05 (Sep 9)

Sandy and Zaccar thank you very much for your replies.
I will seriously consider changing the doctor. Tomorrow I will start my new dose and I hope and wish that everything goes well !!In October i

by sandy craine (Sep 9)

Hi Faidra,
Tasigna: first line treatment in newly diagnosed CML is 600mg (300mg twice daily). I assume the doctor who prescribed 8oomg per day is not expert in CML and may have

by Zaccar (Sep 9)

Wow! congratulations,
I'm a man, very tall and I weigh 120kg and I'm on 800mg and responded to it after ten days (all my blood cells were in normal range). 800mg is a very high dosage

by Faith_05 (Sep 8)

Hi to all!!!
I am going to reduce the dose of tasigna I am taking. From 800 to 600mg.
I just turned and completed five months of treatment.
The reason I do this is because I talked to
Category: Blood tests

Replies: 20

Last updated: 9 September 2020
johnw1001 on 2 August 2020

Category: Blood tests

Replies: 4

Last updated: 5 August 2020

BCR/ABL ratios % and IS factors
by AlastairC (Aug 5)

Hi John, glad the input was useful. Certainly process times have gone down over the years; I was involved around 15 years ago in the first implementation of a same day forensic DNA profiling system

by johnw1001 (Aug 5)

Hi Alistair,
Thank you for your expert input .One of the benefits of new equipment it seems is a faster turnaround time for the results to emerge .When long ago I was dx I was advised that it took 2

by Sunny (Aug 5)

Thank you Alastair for this explanation.

by AlastairC (Aug 2)

Hi John, having managed a UKAS accredited microbiology lab, I hope I can help. As part of the UK Accreditation Service audit (against the standard ISO 17025), equipment has to be shown to be
Category: Blood tests

Replies: 4

Last updated: 5 August 2020
Batman0424 on 29 July 2020

Category: Blood tests

Replies: 6

Last updated: 5 August 2020

Immature Granulocytes 0.0 -> 1.3 %
by Tater1 (Aug 5)

Thank you! That is what I was able to find out from my Dr as well. I really appreciate the info.

by Nimbus2 (Jul 31)

I found this:
Immature Granulocytes (%)
A healthy result should fall into the range 0 - 0.5 %.
Immature granulocytes are white blood cells that are immature. Small amounts of white blood cells

by Nimbus2 (Jul 31)

I had a look back and observed that my IG was 18.34 when my white blood count was 74.49 shortly after diagnosis. The IG has later been zero or a small number less than 1.
My consultant tells me that

by Tater1 (Jul 31)

Thanks Alex! You’re right... we will get there! Faith in the process and enjoying life is so important, especially now. I have a great Dr. and I know he will call the
Category: Blood tests

Replies: 6

Last updated: 5 August 2020
Trevorp93 on 2 June 2020

Category: Blood tests

Replies: 5

Last updated: 25 July 2020

Need advice on Sprycel dosage
by terris (Jul 25)

Let me share my expereince,
I am Hong Kong CML Patient diagnosed on Jan 2014 when I only 30 years old.
During the next fix years, I taken 100mg as dosage and keep log4 result steadily.
Since

by terris (Jul 25)

Let me share my expereince,
I am Hong Kong CML Patient diagnosed on Jan 2014 when I only 30 years old.
During the next fix years, I taken 100mg as dosage and keep log4 result steadily.
Since

by Karthikeyan (Jun 2)

Hi six years back i had suffered with proctitis.i had the same symptoms you are going through now.i took pentasa for just 15 days and got relieved from symptoms.i don't know how severe is your

by Karthikeyan (Jun 2)

Hi six years back i had suffered with proctitis.i had the same symptoms you are going through now.i took pentasa for just 15 days and got relieved from symptoms.i don't know how severe is your
Category: Blood tests

Replies: 5

Last updated: 25 July 2020
Justine on 16 July 2020

Category: Blood tests

Replies: 5

Last updated: 21 July 2020

BCR ABL numbers going up
by Praa (Jul 21)

Hi,
You go for double dose, insted of 400 mg, take onther 200 mg per day, per day 600 mg, it will work good.
Thanks 😊😊

by Justine (Jul 17)

Thanks for this advice and reassurance. I was not able to make my March quarterly appointment because everything was locked down and I was stuck at a friend's in a different city for March-April

by Justine (Jul 17)

Thanks Alex. I have been on 400mg imatinib since diagnosis. My doctor did request a mutation test which came back negative. I am working on getting in to see a leukemia specialist at Stanford

by ColoradoGuy (Jul 17)

From looking at these results I don't think there is much difference in the last three results. 0.1219 of course makes it seem worse because it is just outside MMR but I think the outlier
Category: Blood tests

Replies: 5

Last updated: 21 July 2020
cct121 on 12 June 2020

Category: Blood tests

Replies: 7

Last updated: 13 June 2020

Changes in Log results - Dasatinib
by cct121 (Jun 13)

Thanks Scuba,
From browsing through the forums, and other advices, I'm starting to take multivitamins, and then looking into finding a nutritionist who can help see what other deficiencies my

by scuba (Jun 12)

"Just for clarity, are the values of Log-reduction based on each individual patient's initial diagnosis?" Should be.
You are going to be fine. Stay aware and track. Listen to

by cct121 (Jun 12)

Understood, the next time I go see my oncologist I'll see if the lab that sends the results has these values written down (I'm sure they do). Since my diagnosis, all of the reports I've

by scuba (Jun 12)

PCR is typically reported as a percentage ..... PCR = 0.xx. If you are in MMR then your PCR would be below 0.1 %. Log reporting is always relative to starting PCR at diagnosis and is different for
Category: Blood tests

Replies: 7

Last updated: 13 June 2020
patricia donlon on 8 June 2020

Category: Blood tests

Replies: 0

Last updated: 8 June 2020

Question please
by patricia donlon (Jun 8)

I was diagnosed last August. Have been taking Imatinab 400mg since.
March 4 2020 BCR/ABL1 results were : E13A2 (B2A2) was 0.4891-----E14A2 (B3A2) was 4.2755
April 30th
Category: Blood tests

Replies: 0

Last updated: 8 June 2020
Chuckster on 3 June 2020

Category: Blood tests

Replies: 7

Last updated: 3 June 2020

Latest Blood Test Results: May28, 2020
by scuba (Jun 3)

This is what I take and not specific to CML patients. I wish I had known about the importance of these prior to CML and had been taking them. At diagnosis my vitamin D level was 17 ng/ml):
1.

by scuba (Jun 3)

If I am not eating foods rich in zinc (Oysters), I just take a daily supplement from time to time (15 mg). Women need less than men. No specific brand, just reputable. I tend to take zinc every day

by Karthikeyan (Jun 3)

Hello scuba, what are the supplements cml patients should take other than vitamin d3.

by Felix (Jun 3)

Hi Scuba, just going to add Zinc to my other vits ,how much do you recommend please ,thank you , Denise.
Category: Blood tests

Replies: 7

Last updated: 3 June 2020
lupus on 27 May 2020

Category: Blood tests

Replies: 0

Last updated: 27 May 2020

Blasts in peripheral blood after 12 months of treatment (MMR reached 3 moths ago).
by lupus (May 27)

Hi,
may I ask how often is having 0,5 % blasts in peripheral blood after reaching MMR? I have been tested today and other blood parameters were ok. I am still waiting for todays PCR results, but
Category: Blood tests

Replies: 0

Last updated: 27 May 2020
Ray Sell on 22 May 2020

Category: Blood tests

Replies: 4

Last updated: 23 May 2020

Lab change and my BCR/ABL numbers went up
by Ray Sell (May 23)

David thank you for all the information.
Ray

by David Fitz (May 23)

PCR is done on a machine and is a complex process, amplifying genetic code thousand and thousands of times. Newer machines employ different ways of doing it, so it’s not always directly

by Ray Sell (May 22)

David
Lab Corp: May 2018 B2A2 .0032 B3A2 0.1482 Sept 2018 B2A2 0.0032 B3A2 0.1123 Jan 2019 B2A2 0.1694
B3A2 0.1482

by David Fitz (May 22)

Hi Ray,
The IS system is not perfect, and not all labs are on the IS anyway and even those that are do not always report results on the IS. Mine, for example, is IS calibrated but reports local
Category: Blood tests

Replies: 4

Last updated: 23 May 2020
ckquinn on 18 May 2020

Category: Blood tests

Replies: 3

Last updated: 19 May 2020

Hospital Appointment
by alexmcpee (May 19)

I was anxious too. Had blood draw 3 weeks ago and it was safe and well managed. I too wore a mask and gloves.
Have my PCR call with my consultant on Friday. If that wasn’t anxiety inducing

by ckquinn (May 19)

Thanks Denise, all went very well just bloods and medication today, very safe protocols in place. Even braved a visit to the on site Marks and spencer. Hope all is well with you, stay safe.

by Felix (May 18)

Hi, I am surprised your doctor isn't doing telephone consultations as mine did last week. A blood test appointment was made for me at a safer hospital where I don't have to enter the actual

by ckquinn (May 18)

Wee bit anxious about my first lockdown appointment at hospital tomorrow, BCR ABLE bloods due and I need to collect Dasatinib. I had been attending every 6weeks with the hope of coming off meds in
Category: Blood tests

Replies: 3

Last updated: 19 May 2020