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Rocky Mountain Gal on 16 February 2023

Category: Treating CML

Replies: 12

Last updated: 3 May 2023

What should I do now?
by David Fitz (May 3)

That’s fantastic! It so great when you find a doctor on the same wavelength as you, and you can work with. Different patients need different things from their doctor and I know I wouldn’t chance

by Tbrand (May 3)

Excellent news, so happy for you!

by ColoradoGuy (May 2)

Glad to hear it. I hope this gets you comfortably under 1.0 soon. Even deeper. Why not?

by Rocky Mountain Gal (May 1)

UPDATE: I am so happy to report that after ONE MONTH on Asciminib, my BCR/ABL dropped from 54% to 10%!!!!! My new doc is brilliant. I refer to him as Marcus Welby, MD because he has really taken
Category: Treating CML

Replies: 12

Last updated: 3 May 2023
Angie123456 on 19 April 2022

Category: Uncategorised

Replies: 2

Last updated: 2 May 2023

Cml and ASXL1 mutation
by healthyhabits (May 2)

Hi, I’m dealing with this now - haven’t started treatment yet, just had the biopsy last week and am seeing the oncologist Monday. Any success with meds so far?

by sandy craine (Apr 25)

Hi Angie,
As far as I can understand the ASXL1 mutation in CML can point to resistance to TKis particularly imatinib. see here :https://ashpublications.org/blood/article/134/Supplement_1/4148/424354

by Angie123456 (Apr 19)

Has anyone Dealt with cml and also ASXL1 mutation ??
Category: Uncategorised

Replies: 2

Last updated: 2 May 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
Ronniejohn46 on 25 April 2023

Category: Children & young people

Replies: 5

Last updated: 1 May 2023

INCREASED PCR FISH
by Nimbus2 (May 1)

My consultant told me that the weight gain following the early use of the TKI is caused by the body recovering from CML symptoms. I was assured at the time that it was a good thing. Before CML, I

by Ronniejohn46 (Apr 26)

Hello,
Thank you for your reply. It answered many of the questions I have about the failure (probably) of my TKI. I've been on 300MG almost since I was diagnosed in December, 2020. The initial

by scuba (Apr 25)

A mutation is possible, but I think unlikely. Your Gleevec dose is quite low (at 300 mg) and enabled a pool of resistant cells (the clone) to smolder and emerge once the dominant clone was killed.

by Ronniejohn46 (Apr 25)

Thank you for replying. I am scheduled for a BMB next week because my doctor suspects a mutation. I'll know what the results are a couple of weeks later.

I'm curious, though. If Gleevec has
Category: Children & young people

Replies: 5

Last updated: 1 May 2023
MartinZA on 12 April 2023

Category: Treating CML

Replies: 3

Last updated: 28 April 2023

Involuntary TFR update: the dream continues
by MartinZA (Apr 28)

Thank you so much kat and David - you and so many others on this site have been a constant source of support to me and I am so grateful.

by David Fitz (Apr 21)

Terrific news, Martin!
Long may it continue for you.
David.

by kat73 (Apr 21)

Your story is so terrific - you really went from a bad place straight on up! Great news.

by MartinZA (Apr 12)

Hi everyone
This is just an update on my involuntary TFR attempt: in brief, I experienced severe, late-onset side effects from 400mg imatinib 8 years after diagnosis and this necessitated my
Category: Treating CML

Replies: 3

Last updated: 28 April 2023
David787 on 22 April 2023

Category: Drug-drug interactions

Replies: 5

Last updated: 26 April 2023

Shingles Vaccination
by David787 (Apr 26)

Thanks Chrissie,
Had the first dose this morning - looking forward (not) to the booster!

by chrissie (Apr 26)

I had the Shingrix ( double dose) vaccine last autumn and it was fine. No side effects. Just check that your surgery knows you need Shingrix

as it may need to be ordered.
Best to all

by David Fitz (Apr 23)

Yep, Shingrix is not live.
David.

by David787 (Apr 23)

Many thanks David, I have not been informed which vaccine they are offering.
I am guessing that Shingrix is the non-live vaccine….
David
Category: Drug-drug interactions

Replies: 5

Last updated: 26 April 2023
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