Understanding CML: Expert Videos for Patients

iCMLf Publicaions.

iCMLf Forum 2022: The Next Big Challenges in CML? Webstreams

iCMLf publications: A selection of interesting articles on CML from peer-reviewed journals

You are here

Forum

johnw1001 on 29 October 2021

Category: Blood tests

Replies: 6

Last updated: 6 November 2021

What does antibody testing for Covid tell us ?
by scuba (Nov 6)

Just to emphasize a key point - it's not about antibodies. It's about T-cells.

https://thepoliticsofduh.com/2020/09/27/t-cell-immunity-what-fauci-and-t...

T-cells is what protects you from

by johnw1001 (Oct 30)

Hi Christine,
So with the NHS test you presumably were not given a score?
Looking at some of the private ones such as Roche which some labs use the range in terms of the positive score is from 0.8 u

by Christine R (Oct 30)

Hi John
I was given an anti body test at me treating hospital and the result was half that of a normal healthy person but there is still not a level that i am aware of that is known to be an optimal

by scuba (Oct 29)

https://www.medicalnewstoday.com/articles/antibodies-fight-off-the-new-c...?
https://directorsblog.nih.gov/2020/07/28/immune-t-cells-may-offer-lastin...

Professor Tim Spector does an excellent job
Category: Blood tests

Replies: 6

Last updated: 6 November 2021
Poppert on 1 August 2018

Category: Blood tests

Replies: 6

Last updated: 26 October 2021

Time to get PCR test result?0
by jonnie turpie (Oct 26)

Hello

As I am 3 months into CML treatment I am attending for my first PCR test next week.
I read the PCR leaflet you provided the link for and found it very clear in its explanation of

by Poppert (Aug 1)

Ok, I thought maybe they had machines for that and that PCR-analysis was quick.
It was apparently important that I took the samples in the afternoon so it could go fresh with a transport to the lab

by Nimbus2 (Aug 1)

I love all this help and the little ideas. Thank you, Chrissie. I am learning quickly.
For the moment, I am being treated like Royalty. I pop into the newly opened haematology unit in Solihull

by chrissie (Aug 1)

Hi Stephen
This is not relevant to you right now as a newly dx patient but it may be useful to you later.
I have 3 monthly PCR tests done at my local hospital. To avoid the long wait
Category: Blood tests

Replies: 6

Last updated: 26 October 2021
AlastairC on 21 September 2021

Category: Blood tests

Replies: 9

Last updated: 9 October 2021

Larger sample required for BCR-ABL?
by David Fitz (Oct 9)

Just reporting back from Bart’s, where I was on Friday. Just a single lavender (I don’t know why they aren’t just called purple!) for the BCR-Abl PCR test. Of course that’s

by nicolaclubb (Oct 8)

At my local hospital I have alway had 5 ‘purple top’ vials taken for my BCR which get put into a separate bag to be sent to Kings. When Iv had my BCR taken at kings it’s also been

by Felix (Oct 4)

Hi, Alastair ,had my bloods done today and nobody knew about any changes in quantity of sample for BCR ABL.They rang thru to someone to check ,not sure if they actually rang Liverpool tho and the

by chrissie (Sep 28)

I see different phlebotomists most times at my GP surgery and they take out the EDTA files and fill at least 2 sometimes 3 for the BCR ABL in the belief that the more the better. I am the only
Category: Blood tests

Replies: 9

Last updated: 9 October 2021
reginawagner on 27 September 2021

Category: Blood tests

Replies: 13

Last updated: 30 September 2021

CML and no antibodies
by scuba (Sep 30)

Excellent reference!
.... from the article,
"Substantially more vitamin D is required for optimal immune function than for bone health. It seems Dr Fauci is not ignorant of this, having

by Christine R (Sep 30)

Just found this very readable article about vitamin D and T cells with covid
https://www.bmj.com/content/370/bmj.m3563/rr-6

by sandy craine (Sep 30)

Scuba, thanks for taking the time to write this easy to understand summary of an immune response and the important role that D3 plays.
Sandy

by reginawagner (Sep 30)

Thanks so much, that is a bit of a reassurance!
Category: Blood tests

Replies: 13

Last updated: 30 September 2021
ishb1 on 28 April 2021

Category: Blood tests

Replies: 2

Last updated: 29 September 2021

Rising Level of Bilirubin
by JPD (Sep 29)

Ive had bilirubin 1.6 before and my Onc has said not to worry about it in the slightest. Im assuming your other liver panels are within normal range? If so, I wouldnt sweat it at all. Worry

by johnw1001 (Sep 26)

Hi,
I have had some liver issues (certain scores) recently after long term use of imatinib but my Bilirubin is normal. My consultant told me that it is not unusual in the early stages of taking a

by ishb1 (Apr 28)

I am currently on Imatinib 400 MG, diagnosed back in October of 2020. Noticed my bilirubin has been slowly rising the last few weeks. Has any one else had this happen? I read that intense exercise
Category: Blood tests

Replies: 2

Last updated: 29 September 2021
Nonkuthalo on 22 September 2021

Category: Blood tests

Replies: 2

Last updated: 23 September 2021

Can you be pregnant while living with CML
by Nonkuthalo (Sep 23)

Thank you very much for your answer. I'm really relieved to hear that.

by scuba (Sep 22)

Yes.
Once your CML is under control (and it will), you can expect to have a family one day.

by Nonkuthalo (Sep 22)

Hello

My name is Nonkuthalo and I am 27 years old, I have been diagnosed with cml earlier this year and I was wondering if I will ever be able to have my own children one day?
Category: Blood tests

Replies: 2

Last updated: 23 September 2021
KingBurger on 27 August 2021

Category: Blood tests

Replies: 5

Last updated: 18 September 2021

Sprycel
by KingBurger (Sep 18)

Thanks for checking in. I seem to be doing well. I take the Sprycel each morning and the headaches and nausea have all dissipated. The only thing I do notice at times is a rapid and strong heartbeat

by Krissi0913 (Sep 18)

Hi! I take 100 mg Sprycel. My only suggestion is to take it in the evening. Sprycel tends to some fatigue and brain fog for me, so if I take it at 10 pm, I am just sleeping through it.

by Felix (Sep 3)

Hi Kingburger,just checking to see how you are feeling on your new meds .Headaches in the morning? Hope you are feeling ok ,Regards .

by KingBurger (Aug 28)

Thanks Felix for the response. I had this discussion with the CML specialist when he made the change ask if I could take 50mg instead. I lost the debate- his rationale was since I was resistant to
Category: Blood tests

Replies: 5

Last updated: 18 September 2021
Vikram on 23 July 2021

Category: Blood tests

Replies: 23

Last updated: 1 August 2021

WBC
by Vikram (Aug 1)

Hi rc,
BCR-ABL report every 8 months
9/2019 - 2021 ( 2 time)
No future plan...

by Vikram (Aug 1)

Thanx reply...

by EvaH (Jul 31)

Based on the medication prescribed and wbc, the doc thinks you have a minor infection and/or an allergy.
How many people do you need to ask before you believe that based on the information you

by RC Kirk (Jul 31)

Vikram, I'm curious as to your plans for future CML treatment. Are you going to continue ramping your imatinib dose up and down?
Will you try to go treatment free for an extended
Category: Blood tests

Replies: 23

Last updated: 1 August 2021
VinayJagnani on 25 July 2021

Category: Blood tests

Replies: 3

Last updated: 29 July 2021

BCR Levels
by JPD (Jul 29)

while it sucks not seeing that magical (and for some of us mythical) NOT DETECTED - your numbers are great and you are kicking CMLs ass. Rest easy.

by VinayJagnani (Jul 25)

Hello Sandy,
Thanks for the response. It's a relief to read your response and your guidance on that.
Yes, you are right.. I was expecting 2 continuous reports to have not detected, but that has not

by sandy craine (Jul 25)

Hi,
looking at your PCR results, I can't see why you are overly worried. Your last two results are both very low - undetected and 0.068. Is your worry because you have had two results that are

by VinayJagnani (Jul 25)

Hello All,
I hope everyone is safe and doing fine in this pandemic times.
I was detected with CML in September 2018 and have been on Imatinib 400mg. Below are my BCR Levels
From September 2018 to
Category: Blood tests

Replies: 3

Last updated: 29 July 2021
JPD on 16 July 2021

Category: Blood tests

Replies: 1

Last updated: 18 July 2021

Dose reduction approved (yay!) Liver Panel anxiety (boo!)
by sandy craine (Jul 18)

Why are you giving yourself such a hard time? I would say you are probably very aware that you are overthinking your blood results. Focus all your 'worry energy' on the most important - and

by JPD (Jul 16)

First, the good news. We are gonna drop me down from 400mg of Tasigna per day to 300mg and retest after 3 months. My docs thought it totally reasonable (even though I had to ask for it
Category: Blood tests

Replies: 1

Last updated: 18 July 2021
Roza on 6 July 2021

Category: Blood tests

Replies: 6

Last updated: 16 July 2021

12 month BCR reading not as expected
by EvaH (Jul 16)

Ps there was no mutation, im still on 400mg imatanib, with time side effects diminished. Do a search on this forum for tips on managing them. Best of luck!

by EvaH (Jul 16)

I was checked for a mutation due to sub optimal results at 3 months. It seems to be a standard medical protocol when there's a blip in bcr/abl progession.
I agree the extra tests are from caution,

by Roza (Jul 8)

Many thanks, I think there is so much focus on the 12 month point from the time of diagnosis, it just makes it a bit more nerve-wracking than it probably should be. Really appreciate the support.

by ColoradoGuy (Jul 8)

I would wait to see if you have a trend before any switch. It may just be a plateau with a drop coming up. Alistair is right that 0.3% at 12 months is pretty good. I have seen my
Category: Blood tests

Replies: 6

Last updated: 16 July 2021
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