You are here

Forum

Myrtle on 19 April 2023

Category: Side effects

Replies: 5

Last updated: 19 April 2023

Dasatinib cessation failure. Try Bosutinib or reduced dasatinib dose?
by Myrtle (Apr 19)

Thanks scuba. Getting a new doctor isn’t on the cards. Yes I take Mag etc… I just am wondering about people’s experience on Bosutinib compared to Dasatinib? Perhaps a silly question as we all seem

by Myrtle (Apr 19)

Ro6ue1, Thankyou but I don’t think this is relevant to my question. I was undetectable for over 3 years on dasatinib, I’m not now because I stopped treatment.

by r06ue1 (Apr 19)

Try to get Misoprostol, see my message here and spread the word: https://cmlsupport.org.uk/thread/14740/drug-combo-cml-medication-misopro...

by Nimbus2 (Apr 19)

I think that my haematologist is reluctant to reduce my dasatinib dosage because of other factors:
- hit a plateau well short of MMR on imatinib before changing to dasatinib

- snail's pace
Category: Side effects

Replies: 5

Last updated: 19 April 2023
scuba on 5 April 2023

Category: Uncategorised

Replies: 3

Last updated: 19 April 2023

Quercetin - Another study confirming its cancer fighting ability
by r06ue1 (Apr 19)

Misoprostol works.
https://cmlsupport.org.uk/thread/14740/drug-combo-cml-medication-misopro...

by Nimbus2 (Apr 19)

There are many encouraging petri dish experiments with various flavonoids: quercetin, fisetin, berberine and resveratrol. There are also some rodent studies.
There is much negative commentary

by Heidi S (Apr 13)

I have been reading your posts and know that you have been TFR for awhile now. Congrats!
Before you went TFR, did you take TKI and quercitin together? What was the dosage you used? Thanks. I

by scuba (Apr 5)

https://www.europeanreview.org/article/31795
Eur Rev Med Pharmacol Sci 2023; 27 (6): 2580-2590
DOI: 10.26355/eurrev_202303_31795

Quercetin downregulates the expression of IL15 in cancer cells
Category: Uncategorised

Replies: 3

Last updated: 19 April 2023
JPD on 13 April 2023

Category: Drug-drug interactions

Replies: 2

Last updated: 19 April 2023

Resveratrol & TKIs
by r06ue1 (Apr 19)

See this post: https://cmlsupport.org.uk/thread/14740/drug-combo-cml-medication-misopro...

by johnw1001 (Apr 14)

Hi ,

Some years ago I came across one or two articles that indicated that resveratrol was a possible substitute for tki s and tended to be a critique of big pharma and its money making

by JPD (Apr 13)

So I know Resveratrol is being studied for its anti-cancer potential - and CML in particular, but Ive read that Resveratrol also screws with the way your liver might process the TKIs (as far as I
Category: Drug-drug interactions

Replies: 2

Last updated: 19 April 2023
johnw1001 on 14 April 2023

Category: Other conditions

Replies: 7

Last updated: 19 April 2023

Spring 2023 booster jab for Covid in UK
by Nimbus2 (Apr 19)

I was pretty knocked about by Monday's Pfizer jab: wide-spread muscle aches and last night a mild fever.

by chrissie (Apr 19)

I was reminded on the CML UK FB site and booked online for the nearest centre. I am having it tomorrow and will take a hospital letter stating I have CML and see what they do. It has worked with

by David Fitz (Apr 17)

That’s the one with the adjuvant, isn’t it? I have no idea at all how they work, but I suppose it must be a bit like the flu vaccine where the adjuvanted version is reserved for the older population

by Nimbus2 (Apr 17)

Today, those over 75 were getting the Sanofi jab. I am 67, so I was singled out for Pfizer.
Category: Other conditions

Replies: 7

Last updated: 19 April 2023
scuba on 23 March 2023

Category: Uncategorised

Replies: 5

Last updated: 16 April 2023

TFR Update
by Karinne (Apr 16)

Superbe news!!! What a journey. Your deep knowledge of CML is invaluable to all of us. Many thanks always.

by David787 (Apr 14)

hat is such good news, Scuba. Congratulations.

by MartinZA (Apr 13)

Amazing news, scuba. So pleased that TFR is working so well for you and hoping it continues indefinitely!

by scuba (Mar 24)

Please let us know how it goes and whether you achieve "undetected" and TFR.
Category: Uncategorised

Replies: 5

Last updated: 16 April 2023
Karinne on 8 April 2023

Category: Uncategorised

Replies: 6

Last updated: 14 April 2023

in TFR for 4.5 years
by David787 (Apr 14)

That is such brilliant news! Gives us all hope. Well done indeed.

by Karinne (Apr 12)

Thank you all for your kind wishes. It feels good.

by MartinZA (Apr 12)

This is wonderful news Karinne! Congratulations and best wishes from South Africa - may it stay undetected for 45 more years!

by Sav_5 (Apr 11)

Congratulations Karrine! My best wishes and remain undetected all the time!
Category: Uncategorised

Replies: 6

Last updated: 14 April 2023
pianogrl44 on 10 April 2023

Category: Treating CML

Replies: 2

Last updated: 14 April 2023

Imatinib and thin skin on hands
by pianogrl44 (Apr 14)

Thanks, good to know! My doctor has been hesitant to lower my dose since I only just hit the log 4 reduction, I was log 3 for years.
Perhaps after awhile longer with a better response she might cut

by RC Kirk (Apr 10)

I also have a similar side effect. Occasionally a small patch of skin will separate and come off. Mostly on my fingers and knuckles. I don't get large blood blisters, but do get lots of tiny ones

by pianogrl44 (Apr 10)

I’ve been on 400 mg of gleevec daily for 8 years and my CML is well controlled - not undetectable but close at log 4+ reduction, and most side effects are quite manageable.
Lately though the skin on
Category: Treating CML

Replies: 2

Last updated: 14 April 2023
vlacer on 10 April 2023

Category: Treating CML

Replies: 6

Last updated: 14 April 2023

Is relapse possible after MMR?
by vlacer (Apr 14)

Thanks Timo for the great explanation!

Vlacer

by TimoD (Apr 14)

Dear vlacer
I will try to explain briefly. CCyR is a clinical (and statistical) threshold in treatment guidelines which is achieved by the patient when there are no cells with the Philadelphia

by vlacer (Apr 13)

Hi Martin,

Thanks for your answer, I apologize, but I still don’t understand. Genes are segments of DNA in the chromosomes, the BCR-ABL1 gene is formed when pieces of chromosomes 9 and 22

by MartinZA (Apr 12)

Hi vlacer
Your results look really good and aren't cause for concern, in my opinion (but remember that I am not a doctor). I've had ups and downs throughout this CML journey and, after 8 years, it
Category: Treating CML

Replies: 6

Last updated: 14 April 2023
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