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KirstForsts on 12 July 2021

Category: Blood tests

Replies: 4

Last updated: 14 July 2021

Steroids to support bone marrow
by KirstForsts (Jul 14)

Thank you! I’m looking forward to these times passing!
Thank you again for taking the time to reply!
k 😊

by TimoD (Jul 14)

Hi!
In my case the growth factor injection is for increasing neutrophil count. I do not have much trouble with anemia, my concern is neutrophils
EPO aka erythropoetin is an active biological

by KirstForsts (Jul 13)

Hi! Thanks so much for taking time to send such a detailed reply. It’s really helpful!
It is likely my husband will restart TKI therapy next week given the amount of time he has now been off

by TimoD (Jul 13)

Hi!
My situation mirrors your husbands one exactly. I am also 7 months in and struggling with low platelets and low neutrophils. My anemia is mild though and hovering between 10 and 12.
Category: Blood tests

Replies: 4

Last updated: 14 July 2021
jb on 9 July 2021

Category: Blood tests

Replies: 4

Last updated: 10 July 2021

Anemia and lower leg fluid
by jb (Jul 10)

Thanks all!! That makes me feel better! Stay well everyone.
jb

by Krissi0913 (Jul 10)

Hi. I've been taking Sprycel for 31 days now and I have weekly blood tests. My hemoglobin and platelets were low last week, and are now back in the normal range. My WBC have been normal

by sandy craine (Jul 10)

Fluid retention in lower legs? This might be because you are not taking enough exercise, even while you are sitting you could try to keep your feet and legs in motion. Blood/fluid tends to pool at

by ColoradoGuy (Jul 9)

I did have fluid retention in lower legs prior to diagnosis. In fact, that is what made me go to the emergency room to figure out why that was happening. I have not read of any other
Category: Blood tests

Replies: 4

Last updated: 10 July 2021
cmhall604 on 29 June 2021

Category: Blood tests

Replies: 2

Last updated: 30 June 2021

Low drug concentration (nilotinib)
by sandy craine (Jun 30)

Hi Chris,
"...For her most recent tests, the doctor also ordered a drug concentration test. The result was 406 ng/ml, which from what I understand is quite low. I should note that the blood was

by alexmcpee (Jun 29)

Hi Chris
Id say firstly your wife is practically MMR4 (only out by a smidge) still. Some of us have taken decades to get to that level so that’s the 1st positive.
Secondly anything below MMR4

by cmhall604 (Jun 29)

Hello again,
testing time has just passed so I'm back for more info. My wife has recently had some less than ideal results. Here are PCR rest results for background:
9 months after dx: PCRU
Category: Blood tests

Replies: 2

Last updated: 30 June 2021
koralia.pappi on 21 June 2021

Category: Blood tests

Replies: 6

Last updated: 28 June 2021

Nilotinib and c-reactive protein (crp)
by koralia.pappi (Jun 28)

Hi!
Don't worry at all! It's been a nightmare for me as well, to calculate.
(CRP) mg/L = 10* (CRP) mg%
(CRP) mg% is also written as (CRP) mg/dl.
Anyhow :-)
Regards,
Koralia

by hannibellemo (Jun 28)

Koralia,
I had a C-reactive protein done in April of this year. According to Mayo-Rochester the threshold is <=8.0mg/L. My result was <=3.0mg/L. In looking back over your post I think your

by alexmcpee (Jun 28)

I can sympathise completely I am very sensitve to anything out of the "norm" myself. I think especially so when you are fairly new to your new normal and having a CML diagnosis.
The way I

by koralia.pappi (Jun 27)

Hi Alex, Thanks for the answer. You are completely right, of course. I'm overall greatful under the circumstances, for what TKIs offer, but sometimes small fears get the best of me. This disease
Category: Blood tests

Replies: 6

Last updated: 28 June 2021
Tater1 on 23 June 2021

Category: Blood tests

Replies: 2

Last updated: 25 June 2021

Results from AdviseDx SARS-CoV-2 IgG II reagent assaY
by Krissi0913 (Jun 25)

That is great news - thanks for sharing!

by Sally Martin (Jun 24)

Hi, that’s really great news -thanks so much for sharing. I haven’t had a test but am living life to the full again and hoping for the best on the antibody front, having had my second

by Tater1 (Jun 23)

Hi everyone,
I just thought I would share that my antibody test results came back positive today. I know I have to be cautious interpreting the results to mean any kind of immunity to COVID 19, but
Category: Blood tests

Replies: 2

Last updated: 25 June 2021
jb on 22 June 2021

Category: Blood tests

Replies: 6

Last updated: 23 June 2021

Follow-up blood test
by AlastairC (Jun 23)

Hi. depending on where you're being seen BCR-ABL may not be a for a few months. Initial progress can be monitored by FISH (see under the testing for CML section under the "About CML"

by jb (Jun 23)

I am a 10 days on Dasatinib and feeling good overall with minimal side effects. I saw the doctor yesterday who told my side effects could still manifest for a month or more. Can I expect to

by JPD (Jun 23)

My WBC plummeted pretty quick - which is the idea. I remember some of my other numbers being a little fucked up but they normalized in a few weeks and the docs were never concerned.

by jb (Jun 22)

Thanks Al. I appreciate the input.
JB
Category: Blood tests

Replies: 6

Last updated: 23 June 2021
k.Tam on 13 June 2021

Category: Blood tests

Replies: 6

Last updated: 14 June 2021

CML life limitation
by EvaH (Jun 14)

Also indian generic veenat costs 200 usd per month. I found a little more nausea with it but manageable and well worth it if cost is an issue.
You dont have to change country, you can change

by EvaH (Jun 14)

Max Foundation helps with TKI costs in certain countries. Ask about it.

by k.Tam (Jun 14)

Moving to other country is a good idea but not a short term option for me. It is about how to deal with the Tki problem especially on the cost although the cost already drop so muc after tki

by mamodei (Jun 13)

If you are doing well on the TKI I don't see why you need to tell your employers or prospective employers. Many of us are continuing our careers.
Category: Blood tests

Replies: 6

Last updated: 14 June 2021
mil on 8 June 2021

Category: Blood tests

Replies: 4

Last updated: 9 June 2021

Test result bcr-abl
by mil (Jun 9)

Thank you guys for your comments

by Buzzm1 (Jun 8)

mil, it isn't at all unusual for a CML patient to have their BCR-ABL plateau at a low level. With your next (18 month) test, you will have been plateaued at a very low CML level (under 1.0

by mil (Jun 8)

Thank u Al!, i just corrected my resulta in the post.

by alexmcpee (Jun 8)

Hi your close to MMR4 your response is great no need for any change. Not everyone gets to undetected but anything under MR4 is indistinguishable to Undetected.
Absolutey zero reason to change unless
Category: Blood tests

Replies: 4

Last updated: 9 June 2021
Merlinlewis on 28 May 2021

Category: Blood tests

Replies: 2

Last updated: 29 May 2021

Tasigna Doesnt Seem to Work, increasing BCR ABL
by alexmcpee (May 29)

I understand your concern as you dipped below CCYR (1%) and then back up again. The jump looks a lot of paper but I don’t think really it’s that large. You’ve had a good response

by David Fitz (May 28)

Hi there,
Your doctor sounds sensible - give it a few more weeks, test again and if there's not an improvement switching is a smart move. PCR testing is imperfect and this rise could be just a

by Merlinlewis (May 28)

Hey everyone!
Ive been a quiet Reader in this Forum for about 6 Months now. Yesterday i got my bloodwork Back and im pretty concerned.
about me: 24 years old, Male, Diagnosed With 84% BCR ABL
Category: Blood tests

Replies: 2

Last updated: 29 May 2021
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