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

birthdaycake on 10 April 2023

Category: Uncategorised

Replies: 2

Last updated: 12 April 2023

Travel and time difference
by MartinZA (Apr 12)

Hi birthdaycake
I fully agree that you should stick to the original time frame wherever possible. I was diagnosed 8 years ago and my doctor impressed the importance of taking it regularly on me - I

by saa3 (Apr 11)

Hi birthdaycake!

In my opinion, I think you shouldn't skip your pills and keep taking them at the same actual time calculated from each time zones.

For example, if you are in Los Angeles

by birthdaycake (Apr 10)

Hi everyone! I’m new to this forum. I have been diagnosed 2 years ago and Im currently taking 400 Imatinib/Gleevec. I haven’t been able to travel much since my diagnosis and wanted to hear from
Category: Uncategorised

Replies: 2

Last updated: 12 April 2023
Sorin on 12 April 2023

Category: Clinical trials

Replies: 1

Last updated: 12 April 2023

Scientific study on tyrosine kinase inhibitors imatinib, dasatinib, and nilotinib
by scuba (Apr 12)

From the article Sorin linked above regarding Dasatinib:
The clinical response and toxicity profile of initial treatment with half-dose dasatinib were more favorable compared with those documented

by Sorin (Apr 12)

I came across this recently published study: https://www.frontiersin.org/articles/10.3389/fonc.2023.1146108/full?utm_...
Category: Clinical trials

Replies: 1

Last updated: 12 April 2023
Evie on 14 March 2023

Category: Uncategorised

Replies: 8

Last updated: 12 April 2023

Extreme fatigue
by Heidi S (Apr 12)

I was diagnosed August 2019 and am on 100mg Sprycel.
First of all, as a woman, I TOTALLY can tell when my time of the month is coming and I swear it is worse than it used to be (even though blood

by thomas.c (Apr 9)

Hi Evie,

My cml journey was not exactly smooth, and my greatest challenge for the past 4-5 years have been extreme fatique and brain fog. Ever since I’m taking dasatinib i’m a shadow of my

by Evie (Mar 31)

It’s interesting to hear how different you felt after changing medication.
What was the reason you changed over to Tasigna.

by Jens (Mar 31)

I was on imatinib my first two years (can't remember exactly), looking back I think I felt great in the beginning, after 1-2 months I had perfect blood values. The only side effects I remember was
Category: Uncategorised

Replies: 8

Last updated: 12 April 2023
Penny17 on 29 March 2023

Category: Getting help

Replies: 2

Last updated: 11 April 2023

Husband recently diagnosed
by TJD (Apr 11)

Penny

So sorry to hear about your Husband,believe me when I say that there is hope I was diagnosed with CML in 2001,the only thing that they could offer me was to take part in the Clinical

by AlastairC (Mar 29)

Hi Penny, I'm sorry to hear that your husband has joined the CML club. It is a challenging time but the most important thing to bear in mind is that with modern medicines it is highly unlikely that

by Penny17 (Mar 29)

Hello everyone!
My husband was suffering from acid reflux which was not abating along with some minor discomfort in his lower stomach on the left. A visit to the doctors (28th Feb 2023) placed him
Category: Getting help

Replies: 2

Last updated: 11 April 2023
RachaelB on 26 March 2012

Category: Uncategorised

Replies: 9

Last updated: 9 April 2023

Dasatinib & the sun
by David Fitz (Apr 9)

With two 4 year olds you can only imagine I didn’t get a moment to look at any mineralogy, but instead was rammed into the dino hall where twin 2 was terrified of the animatronic T-Rex!
And Harrods

by scuba (Apr 9)

Harrods to the Natural History museum (best gem/mineralogy exhibit in the world) ..... I so miss that walk. One of my favorite strolls and then over to Hyde Park and up to south Kensington for some

by David Fitz (Apr 9)

I got overexposed in the sun today in London.
It was 15 degrees Celsius with a UV index of 3 and I have a red face and neck. The UV index goes up to 11 and 3 is the lowest end of “moderate”. Even

by thomas.c (Apr 9)

Oh yeah, a small walk outside and my face is lobster red. No blisters though... but obvious rednerss. I wouldn't call it sun-burn though. I've had bad sun-burns before, but this is unlike that, more
Category: Uncategorised

Replies: 9

Last updated: 9 April 2023
patriciakh on 5 April 2023

Category: Uncategorised

Replies: 5

Last updated: 7 April 2023

Optical Orbit and CML
by Felix (Apr 7)

Changing to Dasatinib cleared up my puffy swollen eyes within days .Having a biopsy sounds a bit drastic .

by patriciakh (Apr 6)

Hi David,
That is very useful information.

I have already told my GP about this service and she was extremely interested.
Thank you for guiding me to information on puffy eyes.
Happy Easter

by David Fitz (Apr 6)

Hi Patricia,
Obviously I have no clinical background, but over the years I have seen many people with CML complain about puffy eyes. If you use the search feature on this site you’ll find many

by patriciakh (Apr 5)

Hi David,

Thank you for your reply and I understand about Hammersmith.

However 1. In your opinion is it best to consult a CML specialist when a problem such as above occurs?

2.
Category: Uncategorised

Replies: 5

Last updated: 7 April 2023
annie t on 3 April 2023

Category: Children & young people

Replies: 2

Last updated: 4 April 2023

BCR-ABL increased count
by annie t (Apr 4)

Thank you Scuba.. will be meeting my doctor to discuss this further. Appreciate your response.

by scuba (Apr 3)

Hi Annie,
I would not wait. After being undetected for many years while on Gleevec and now showing a positive test, I would switch to low dose dasatinib (i.e. 20mg) now and not wait another 3 months

by annie t (Apr 3)

Hi All,
I am a CML Patient from 8 years and on Gleevec 400 mg. My BCR-ABL reports have been ‘not detected’ from last 4-5 years.

However recent report shows BCR-ABL1/ABL (p210) ratio is 0.05
Category: Children & young people

Replies: 2

Last updated: 4 April 2023
johnw1001 on 23 March 2023

Category: Food & fitness

Replies: 3

Last updated: 2 April 2023

Chromosomes and telemere length
by Nimbus2 (Apr 2)

You can go through the flavonoids one by one and find linkages to CML.
I asked a Glasgow professor about this at a CML forum. She was dismissive. She contended that the flavonoids could not be

by Nimbus2 (Mar 31)

Is this related to discussions surrounding senolytics?
https://www.thelancet.com/action/showPdf?pii=S2352-3964%2819%2930062-3
Notice the repeated mentions of dasatinib and quercetin.

by hannibellemo (Mar 31)

Hi, John! Like you I have only read about the telomere length as it applies to longevity. Interesting that you found an article that mentions the relationship between telomere length and CML

by johnw1001 (Mar 23)

Hi All,

I am not a geneticist so my understanding of matters such as DNA and chromosomal abnormalities like the Philadelphia Chromosome that we all suffer ,is limited.

However I am keen
Category: Food & fitness

Replies: 3

Last updated: 2 April 2023
bendicco on 22 March 2023

Category: Uncategorised

Replies: 6

Last updated: 2 April 2023

Puffy eyelids from gleevec
by Buzzm1 (Apr 2)

bendicco, noticed that you registered on the forum four years and three months ago and am assuming you have been on Gleevec/Imatinib for that length of time; have you been able to reduce your

by bendicco (Mar 28)

Thank you all for your responses! I guess the bottom line is we are damned if we have to take meds for CML and damned if we don’t!!

by Patch (Mar 28)

Hi,
Yes, I also suffer with puffy eyes and lids, headaches on and off. I guess it would be bone pain in my fingers and wrists on and off. I also experience everything that John has written.
I was

by johnw1001 (Mar 24)

Hi

Yes interesting that a change of tki can lead to fewer side effects such as tissue odema.

However by changing over to Dasatinib one runs the risk of being the 1 in 5 that suffers from
Category: Uncategorised

Replies: 6

Last updated: 2 April 2023
eastonm on 2 March 2023

Category: Uncategorised

Replies: 5

Last updated: 1 April 2023

Generic sandoz
by eastonm (Apr 1)

Is any body taking generic sandos imatinib with clopidogrel or aspirin ?

by johnw1001 (Mar 16)

For some time I have now been on generic imatinib (before that branded Glivec) and my specialist suggested that Sandoz as it was owned by Novartis was the safest generic to take -like David said not

by David Fitz (Mar 2)

That’s interesting - looks like it’s changed since it was originally put on the market. Thanks for the updated info!
David.

by eastonm (Mar 2)

According to the sandoz pill leaflet it’s made in 4 different places ,2 in Germany and 2 in Slovenia .glivec only states Slovenia
Category: Uncategorised

Replies: 5

Last updated: 1 April 2023
Rocky Mountain Gal on 31 March 2023

Category: About CML

Replies: 1

Last updated: 31 March 2023

MECOM rearrangement
by scuba (Mar 31)

I have never heard of the MECOM rearrangement, but my curiosity uncovered the following:
"MECOM (also known as EVI1) is a gene that plays a critical role in regulating the development and

by Rocky Mountain Gal (Mar 31)

Hi all,

Has anyone dealt with or even heard of MECOM rearrangement (mutation?)?
Category: About CML

Replies: 1

Last updated: 31 March 2023
Vikram on 30 March 2023

Category: Uncategorised

Replies: 0

Last updated: 30 March 2023

The placebo effect
by Vikram (Mar 30)

The placebo effect Book
Meditation
Mental rehearsal
Category: Uncategorised

Replies: 0

Last updated: 30 March 2023
Damian Gabilondo on 22 March 2023

Category: Uncategorised

Replies: 1

Last updated: 23 March 2023

TFR Update
by Sav_5 (Mar 23)

Hi Damian,

Great news! I hope the next results will be as good as the last one and you tfr will have success!!Do you experience pain after discontinued your treatment? Keep updating us and

by Damian Gabilondo (Mar 22)

Hello, I wanted to communicate my update for the first two months my TFR started, 02/14/2023 0.0013 RM 4.5 first month, 3/14/2023 0.0004 RM5.0 second month, the fall caught my attention after almost
Category: Uncategorised

Replies: 1

Last updated: 23 March 2023
Poppert on 20 March 2023

Category: Organising your life

Replies: 3

Last updated: 21 March 2023

Tasigna timing question
by alexmcpee (Mar 21)

Hiya
I’ve been on this medication for 5 years and I try to stick as close as I can 90% of the time to 8am and 8pm. However their are quite a few occasions where I have taken the medicine and hour or

by Poppert (Mar 21)

Thanks for sharing your knowledge! I never miss the fasting period, it seems easier to keep. So far, my own personal rule has been that I can flex +/- 2 hours in the 12 hours between doses rule. So

by TimoD (Mar 21)

Hi!
I would recommend to stick to the no eating rule since food, especially fatty foods are known to increase nilotinib plasma concentration. I am using nilotinib as well and trying to comply with

by Poppert (Mar 20)

How important is the exact timing when taking Tasigna?
Would you rather “cheat” on the “12 hrs between doses”- rule, or the “don’t eat 2hrs before and 1hr after” - rule?
For example:

I
Category: Organising your life

Replies: 3

Last updated: 21 March 2023
KingBurger on 13 March 2023

Category: Treating CML

Replies: 6

Last updated: 21 March 2023

Ponatinib vs Transplant
by KingBurger (Mar 21)

Thanks for checking in. Started on Friday and so far so good. A little skin sensitivity and mild headache, but that’s it so far (hopefully it stays that way). Let’s see how the blood work comes back

by TimoD (Mar 21)

Hi
Let us know how things are going with ponatinib when the time is right.
Take care

by KingBurger (Mar 15)

Thanks Timo! Will go back and read the study. Hopefully I’ll tolerate the med well and be able to get down to the 15mg dose quickly.
I was tested a couple of years ago for a mutation, after failing

by TimoD (Mar 15)

Hi
I would definitely suggest to try ponatinib first. Given that your BCR-ABL level is very low you have a high likelihood of ponatinib working and overcoming the low level of T315I mutated clone.
Category: Treating CML

Replies: 6

Last updated: 21 March 2023
colleencrane1 on 16 March 2023

Category: Side effects

Replies: 5

Last updated: 20 March 2023

Dasatinib/Sprycel and Bone Density
by Buzzm1 (Mar 20)

Bone density is measured with dual-energy X-ray absorptiometry (DEXA). DEXA is a quick and painless imaging test that uses X-rays to determine whether you have healthy bones, osteopenia or

by colleencrane1 (Mar 20)

Yes! I will keep you all posted!

by colleencrane1 (Mar 20)

Yes! I will keep you all posted!

by kali (Mar 20)

Hi Colleen,
I too have read about dasatinib helping with bone formation and increased bone strength.

I am interested in learning more about this.
Perhaps there will be more information on the
Category: Side effects

Replies: 5

Last updated: 20 March 2023
nicolem on 9 March 2023

Category: Side effects

Replies: 2

Last updated: 20 March 2023

Dasatinib and Pleural Effusion
by kali (Mar 20)

Hi Nicole,
I too had a pleural effusion when taking Sprycel 100 mgm and reduced dosage to 70 and then to 50 mgm, but finally had to get the pleural effusion removed. At that time the Sprycel was

by hannibellemo (Mar 11)

Hi, Nicole,
Many of us do quite well on dasatinib for the first 2 years or so and then a pleural effusion(s) develops. It might be better if they kept her off dasatinib until her effusion totally

by nicolem (Mar 9)

Hi everyone,
I come here for research and help for my mother who was diagnosed with CML three years ago. She tried Imatinib first but it didn't work and she had intense side effects, she was
Category: Side effects

Replies: 2

Last updated: 20 March 2023
vlacer on 15 March 2023

Category: Treating CML

Replies: 0

Last updated: 15 March 2023

New Generic Imatinib
by vlacer (Mar 15)

Yesterday, I received the 30 days’ supply of my Imatinib and noticed that it is different, the label has Archis Pharma as the Mfg. After further research, I found that Archis Pharma is the
Category: Treating CML

Replies: 0

Last updated: 15 March 2023
Kamil on 14 March 2023

Category: Children & young people

Replies: 0

Last updated: 14 March 2023

Lymphocytosis and dasatinib
by Kamil (Mar 14)

Hi all,

I hope everyone is doing well.

We just received our 9month blood and pcr results.

Bcr abl (is) 0.046
But the slightly concerning part is that the lymphocytes are elevated
Category: Children & young people

Replies: 0

Last updated: 14 March 2023
Ammar on 6 March 2023

Category: Treating CML

Replies: 5

Last updated: 13 March 2023

Newly Diagnosed CML patient PH+
by Buzzm1 (Mar 13)

Ammar, a PCR reading of 1.0, or less, means that the CML presents no danger to your health. With your last PCR reading of 0.0957, after only six months of treatment, you are in a position to reduce

by Ammar (Mar 13)

Hi hanni,
Thanks for sharing experience it means a lot, there are number of unexplained questions with every passing day but this kind of support really helps in forward and keeping faith that

by hannibellemo (Mar 12)

Ammar, my first 6 months on dasatinib were horrid! Vomiting the first night and then tremors. I had tremors every evening for at least 6 weeks, they did eventually go away. Then the fatigue...I had

by Ammar (Mar 10)

Hi brother,
Thanks for your time, Yes I usually visited general physician and as per them due to the medicine and current medical conditions my immunity is weak due to which i am having frequent
Category: Treating CML

Replies: 5

Last updated: 13 March 2023