CML Horizons 2024 Videos and Presentations

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

Alex1981 on 23 August 2023

Category: Blood tests

Replies: 6

Last updated: 25 August 2023

Results have gone up 3 times in a row
by Alex1981 (Aug 25)

That’s Great!! Ok , let me see if I can catch you up 😁 sounds like you are doing very well and that fills me with hope

by RC Kirk (Aug 25)

My results have been trending down over the last couple of years. I'm back on original Gleevec and currently 200mg per day.
2022 0.1290%, 0.0671%, 0.0264%, 0.0268%
2023 0.010% (new lab - Quest

by Alex1981 (Aug 24)

Hello . :) 2012 was the year. . I remember the olympics being on when I just found out. Wondering what would be , my son was 2 years old , very worrying time . What are your results like now ? The

by Alex1981 (Aug 24)

Thanks for the reply . It’s kind of reassuring . I don’t take any supplements , I just try and live clean , I use to smoke cigarettes and marijuana , I was never a big drinker . I now do none of
Category: Blood tests

Replies: 6

Last updated: 25 August 2023
loafer on 10 July 2023

Category: Blood tests

Replies: 2

Last updated: 19 July 2023

Any ideas
by alexmcpee (Jul 19)

Blimey I echo everything ColoradoGuy says. It’s important to move on from CML when the goings good but it’s also a reminder it’s never a given this is proof that resistance can emerge which is why

by ColoradoGuy (Jul 10)

I think the first step would be to look for mutations. I would also consider a switch to Nilotinib as Sprycel appears not to be working as intended. I made a switch from Sprycel to Nilotinib and

by loafer (Jul 10)

It has been a while,any ideas from 10/2022 and on .
20 Mg Sprycel

08/2018 thru 02/2019

PCR 0.000
New Doctor

20 Mg Sprycel

06/07/2022 PCR 0.298

10/24/2022 PCR 78.
Category: Blood tests

Replies: 2

Last updated: 19 July 2023
healthyhabits on 12 July 2023

Category: Blood tests

Replies: 1

Last updated: 12 July 2023

PCR Result - 2 Months
by Buzzm1 (Jul 12)

Olivia, an optimal response is BCR-ABL1 ≤10%, ≤1% and ≤0.1% at 3, 6 and 12 months of TKI therapy.
Buzz

by healthyhabits (Jul 12)

Hi everyone,
I received my first PCR result since diagnosis in April. I don’t have the PCR at diagnosis, but the bone marrow aspirate came back at 83% BCR-ABL1.
Started dasatinib in May. Two months
Category: Blood tests

Replies: 1

Last updated: 12 July 2023
Mike B on 23 June 2023

Category: Blood tests

Replies: 7

Last updated: 27 June 2023

Detected after not being detectable
by healthyhabits (Jun 27)

Thank you Mike, thank you scuba! 100mg is way too much for me. I much prefer these side effects to the ones I experienced on bosutinib (crazy nausea) but would much prefer to be on a lower dose than

by scuba (Jun 26)

Olivia,
You were just diagnosed so you need to be very vigilant. If you show signs of myelosuppression, rashes (mouth sores), dose reduction to 70 mg or even better to 50 mg. is warranted. In some

by Mike B (Jun 26)

My specialist now starts all new CML chronic phase patients at 50mg dose if they begin with Dasatinib. She feels there is now enough evidence and studies to show 50mg is a reasonable place to start

by healthyhabits (Jun 26)

Sorry Mike for this surprising result - sounds like Scuba and your doc (among others) know what they are talking about and you are in the best hands!
@Scuba, @others who have experience with this!
Category: Blood tests

Replies: 7

Last updated: 27 June 2023
Kamil on 13 June 2023

Category: Blood tests

Replies: 0

Last updated: 13 June 2023

Elevated WBC , PCR still dropping
by Kamil (Jun 13)

Hi All,

I hope everyone is well,

We just received our 12 month bcr-abl results alongside with the rest of the blood results.
The BCR-ABL (is) is trending downwards from 80% at diagnosis
Category: Blood tests

Replies: 0

Last updated: 13 June 2023
Ronniejohn46 on 31 May 2023

Category: Blood tests

Replies: 6

Last updated: 2 June 2023

What does a FISH BCR-ABL1 t(9,22) percentage tell me?
by scuba (Jun 2)

It is not possible for you to have a FISH percentage (>50%) and be undetected for bcr-abl at the same time unless FISH was used for a different blood disorder (not CML). There could be an error

by David Fitz (Jun 1)

Is this possibly some sort of atypical CML?
Generally FISH from bone marrow results correlate well to PCR (molecular) results from blood. Clearly they are not correlating in your case.
At the heart

by Ronniejohn46 (Jun 1)

I'm not sure either. It could be that I showed concerned about the high FISH and the sustained log>5 reduction.

by Ronniejohn46 (Jun 1)

No, not that I have been briefed. I'm definitely not comfortable with how my case is being handled. I have contacted M.D. Anderson about obtaining a second opinion and, perhaps, additional testing
Category: Blood tests

Replies: 6

Last updated: 2 June 2023
healthyhabits on 25 April 2023

Category: Blood tests

Replies: 6

Last updated: 1 May 2023

New diagnosis - curious about your stats prior to treatment
by David Fitz (May 1)

PCR fluctuates wildly at higher %s, and FISH is more stable at that point. But PCR comes into its own at the lower levels. There are many approaches to CML testing; in a perfect world where pain was

by Nimbus2 (May 1)

Thank you, David, for this helpful posting. I was guided to consider the PCR at diagnosis to be 100%. I was also told that FISH trumps PCR until FISH reaches zero.
I did not get a PCR until three

by David Fitz (Apr 28)

The numbers at the start (mainly excluding blast %) are often not really so important, but how they respond to treatment is the key thing.
You can have a sky high BCR-Abl at diagnosis, over 300% but

by MartinZA (Apr 28)

Hi healthyhabits
So sorry to hear that you've just been diagnosed and that you've had to join our club. I am sure that all of this must be very frightening and overwhelming right now, if you're
Category: Blood tests

Replies: 6

Last updated: 1 May 2023
rambler on 11 August 2022

Category: Blood tests

Replies: 10

Last updated: 6 February 2023

Low platelets, low WBC. First post
by rambler (Feb 6)

Hello Sandy,
Thanks for your message.
As you probably remember, I had a hospital appointment with the doctor today. Had a blood test first. Then to the doctor.
We were told from the blood test that

by sandy craine (Feb 4)

Hi Paul, You should definitely ask detailed questions of your doctor. I have been treated at Imperial College Hammersmith since my diagnosis in 1999. I eventually showed resistance to imatinib in

by rambler (Jan 30)

Hello Sandy,
Many thanks for writing
I didn’t know I had too much to worry about until you mentioned ASXL1 could be complicating matters. Hmmm. Now I have googled the gene it doesn’t

by sandy craine (Jan 30)

Hi Paul,
Re: ASXL1 gene.
From what I have read and understand (very little) ASXL1 is a tumour suppressor gene. It certainly complicates the picture. As you live in London, I assume/hope you are
Category: Blood tests

Replies: 10

Last updated: 6 February 2023
Dustylloyd on 21 March 2019

Category: Blood tests

Replies: 26

Last updated: 21 December 2022

Alcohol and Cml
by Fernando Burbano (Dec 21)

Hola Phillip

Leí que eras físico culturista.

Quería preguntarte si todavía haces ejercicio o lo dejaste por la LMC?. Yo procuro seguír ejercitando en el Gym , pero ya no como antes , me

by Rocky Mountain Gal (Aug 3)

I was taking milk thistle prior to my diagnosis, but was told to stop. That was in the early days, when they had me on multiple drugs.
Is there a resource for checking supplements against

by onekayaker (Aug 3)

Long time to get results!!! The waiting is the worse.

by scuba (Aug 3)

In fact, ANY amount of alcohol is bad for you. I was reading this over a glass of scotch:

https://www.theguardian.com/society/2021/may/18/any-amount-of-alcohol-co...

Other research I came
Category: Blood tests

Replies: 26

Last updated: 21 December 2022
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