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ishb1 on 12 May 2021

Category: Blood tests

Replies: 10

Last updated: 25 May 2021

Low Neutrophils..off Imatinib...rising BCR
by TimoD (May 25)

Hi Sally

Just out of curiosity, at what dose were you started on nilotinib? I pretty much have the same situation with you and I am currently on 200 mg twice a day nilotinib. My platelets

by Sally Martin (May 21)

Hi, I was diagnosed November 2019. Optimal initial response to imatinib but then within 5 months, my neutrophils had dropped to 0.8. It was March 2020, so peak Covid time and my haematologist was

by Crfharris (May 18)

What are your counts?

by scuba (May 15)

I was off for over three months - but by then I was taking Curcumin in high doses.
Category: Blood tests

Replies: 10

Last updated: 25 May 2021
jab on 30 April 2021

Category: Blood tests

Replies: 2

Last updated: 1 May 2021

Has anyone been in remission and then CML detected while on Sprycel?
by jab (May 1)

your comment has lowered my anxiety. Thank you.

by alexmcpee (Apr 30)

Noise of the test. Anything below 0.01 is clinically insignificant. Many people at your amazing level have rises on paper but that’s all they are. Not significance whatsoever. If you rose from

by jab (Apr 30)

I had been in remission (not detectable) since December 2019, my most recent blood work last week shows a slight increase, very slight, 1/1000 of a point. Doc was claiming that I was a miracle
Category: Blood tests

Replies: 2

Last updated: 1 May 2021
MANNI OBEROI on 21 April 2021

Category: Blood tests

Replies: 3

Last updated: 22 April 2021

How much corona effects CML patients
by MANNI OBEROI (Apr 22)

Thanks alex....thank you so much for the support

by MANNI OBEROI (Apr 22)

Thanks alex....thank you so much for the support

by alexmcpee (Apr 22)

No different from the general public that dont have CML if your CML is responding to TKI. Several people on here got COVID and recovered fine. The rules apply the same for us some will get it worse

by MANNI OBEROI (Apr 21)

Just want to know the immune system of CML patients is able to fight covid or not
Category: Blood tests

Replies: 3

Last updated: 22 April 2021
chris23 on 19 April 2021

Category: Blood tests

Replies: 6

Last updated: 21 April 2021

Three-month lag on PCR results
by snowman 35 (Apr 21)

Imagine that I live in Greece and I wait at least 45 days!

by hannibellemo (Apr 20)

I'm always so amazed when I read about the length of time it takes to get PCR results since it only takes about 20 minutes to run the test. I live in a small town and our hospital has a contract

by israel (Apr 20)

You could get in contact with the lab that performs your tests to get to understand how the test pipeline, from collection to processing time.
In my understanding there are a few steps before you

by chris23 (Apr 19)

Thanks both. I used to get my bloods done two-three weeks before a consultation but was advised to aim for seven to 10 days instead, which is what I've been doing since.
I imagine labs are under
Category: Blood tests

Replies: 6

Last updated: 21 April 2021
daniellep on 18 April 2021

Category: Blood tests

Replies: 3

Last updated: 20 April 2021

Hospitalisation
by alexmcpee (Apr 20)

Anytime. No no quite the opposite actually. The 1st 3-6 months is a little bit like that though. Monthly blood draws at first and then when they stabilise you’ll be on either 3 or 6 monthly

by daniellep (Apr 19)

Thank you so much for your positive response! I am in chronic stage. I just envisioned being hospitalised all the time. Glad this is not the case!!

by alexmcpee (Apr 19)

Sorry to hear of your diagnosis. Once you get over the shock (which can take sometime) you’ll begin to realise quite quickly this is a massively treatable and managed condition. A bit like

by daniellep (Apr 18)

Hi. I have been diagnosed with CML in the last few weeks and am very unclear about how my immune system will be affected. If I get a UTI or chest infection - will I have to go to hospital, or can I
Category: Blood tests

Replies: 3

Last updated: 20 April 2021
ShawnJ on 24 March 2021

Category: Blood tests

Replies: 4

Last updated: 14 April 2021

PCR Increase
by ShawnJ (Apr 14)

All,
I am happy to say my latest PCR result is .007. My doctor was really happy with the result and we have decided to try an alternating 20/40 mg of Sprycel. We also discussed my last result which

by ShawnJ (Mar 26)

Thank you for the replies.
Mamodei, I have read a large number of your post and we seem to be fighting similar battles. I have dealt with many of the same side effects. It has been discouraging to

by mamodei (Mar 25)

When I went from Sprycel 50 to Sprycel 20 my BCR/ABL when from 0.0243 to 0.0793 in a couple months. My doctors were not concerned, and my numbers dropped for the next test, and now after a

by Tricky109 (Mar 25)

Hi
Increases or blips as some call them are common not nice at all but can be normal. There is a fantastic facebook group chronic myeloid leukemia uk lots of chats and sharing of experiences it
Category: Blood tests

Replies: 4

Last updated: 14 April 2021
lgm555 on 31 January 2020

Category: Blood tests

Replies: 15

Last updated: 8 April 2021

One year on Imatinib, not at MMR.
by lgm555 (Apr 8)

Thanks for the suggestions everyone! I saw this thread get revived, but I wanted to wait for my telephone appointment with the oncologist before I posted.
Re-reading my post from before -- it

by scuba (Apr 8)

No doctor should ever recommend a transplant based on imatinib failure in 2021. There are many TKI's now available to try. In fact, several of these 2nd generation drugs are now prescribed first

by sandy craine (Apr 7)

I absolutely agree with others who have questioned your doctors 'attitude'. This is not in my personal experience of being treated by expert CML haematologists over 20 years.
To talk of

by Rae_B (Apr 7)

This really was such a great post - I really appreciate your perspective and I'm very grateful you took the time to write it. Thank you.
Category: Blood tests

Replies: 15

Last updated: 8 April 2021
Deni H on 17 March 2021

Category: Blood tests

Replies: 8

Last updated: 19 March 2021

No cytogenetics response to Imatinib
by RC Kirk (Mar 19)

Hi Denise,
Maybe you could get some encouragement if your consultant could explain your level of cytogenetic response more precisely. It sounds like it takes about a month for you to get your

by alexmcpee (Mar 19)

Hi Denise,
Sorry about that I misread that you had not had a cytogenic response for complete cytogenic response for some reason.
Yes the early days you are a pin cushion and for someone who hates

by Deni H (Mar 19)

Hi Alex
Thank you for replying.
My consultant says there's been no cytogenetic response at all although my bloods are now completely normal. We are to have a discussion on the 14th April once

by alexmcpee (Mar 19)

Hi Sandy
Oh sorry I see I read Cytogenic response as CCYR for some reason. Silly me again.
Alex
Category: Blood tests

Replies: 8

Last updated: 19 March 2021
Joe123 on 8 March 2021

Category: Blood tests

Replies: 3

Last updated: 9 March 2021

log reduction
by sandy craine (Mar 9)

If you have stable qPCR results of less than 0.1% you are indeed in remission. The more zeros you have after the decimal point the deeper your molecular response is.
Sandy

by Joe123 (Mar 8)

Thanks David. Is this supposed to be a positive result ? What is the log reduction I need to reach to be in remission.

by David Fitz (Mar 8)

Hi,
It means a deep response.
100% is our baseline for PCR testing, and a log is a multiple of 10.
So a 1 log reduction from 100% is 10%. A 2 log reduction from 100% is 1%, and so on.
A 5 log

by Joe123 (Mar 8)

Can someone let me know what a 4.9 BCR-ABL log reduction mean
Category: Blood tests

Replies: 3

Last updated: 9 March 2021
Myra on 5 January 2021

Category: Blood tests

Replies: 12

Last updated: 8 January 2021

New to CML
by alexmcpee (Jan 8)

You’re more than welcome. I am sure in the coming months things will look more positive for your son and those that love him.
Hang in there once he responds things change dramatically.
Alex

by LiaM (Jan 8)

That is good he was able to take his finals. Hopefully he will be able to return to a normal routine and school 2nd semester. My son was able to postpone his exams but will hopefully be able to take

by Myra (Jan 7)

Hi, I can totally relate to you on this. My son was diagnosed in mid November 2020 and only 19years old. He just turned adult to handle all this and gave his finals in December. I was lucky that we

by LiaM (Jan 7)

My son was just diagnosed as well (this December 2020) and only 22. It has really been a roller coaster. It is hard with him being an adult and yet so young to handle all of this when only moments
Category: Blood tests

Replies: 12

Last updated: 8 January 2021
Nshah on 13 December 2020

Category: Blood tests

Replies: 2

Last updated: 15 December 2020

Nucleated RBC
by Nshah (Dec 15)

Thanks Sandy😊

by sandy craine (Dec 14)

It may indicate that your bone marrow is under pressure. See excerpt from Wikipedia below. It might indicate in your case that you have a low red cell count with can indicate anaemia?
Sandy
A

by Nshah (Dec 13)

Hi everyone
Hop you all are doing great in these tough times.
I have been on imatinib for past 18 months.From last two cbc I am having nucleated RBC.I wanted to ask if anybody have had
Category: Blood tests

Replies: 2

Last updated: 15 December 2020
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