Discontinuation of tyrosine kinase inhibitors in chronic myeloid leukemia: when and for whom?

Efficacy and Safety Results from ASCEMBL, a Multicenter, Open-Label, Phase 3 Study of Asciminib vs bosutinib

COVID-19 therapy & drug interactions

Moving on from 2013 to 2020 European LeukemiaNet recommendations for treating CML: what has changed over 7 years?

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sandy craine on 24 February 2021

Category: About CML

Replies: 3

Last updated: 3 March 2021

PinnedOriginal imatinib/Glivec packaging?
by johnw1001 (Mar 3)

Hi Sandy,
We have been in contact.
I still have packaging for Glivec from 2007 when first dx plus a lot of other historical things like records of bloods on that dreadful day when given the bad news

by sandy craine (Mar 2)

Hi Buzz,
Thanks so much for trying that. I have contacted a couple of clinicians here in the UK as well as Brian Druker so I am hoping that will be fruitful. I am now regretting that I did not save

by Buzzm1 (Mar 2)

Sandy, I posted this over there across the pond. You should have better luck.
Buzz
https://communityview.lls.org/statuses/8698

by sandy craine (Feb 24)

On the off chance that someone treated with imatinib/Glivec/Gleevec from the early/mid 2000s has kept their imatinib packaging, please contact me. There is an upcoming project that will feature the
Category: About CML

Replies: 3

Last updated: 3 March 2021
sandy craine on 26 February 2021

Category: Clinical trials

Replies: 0

Last updated: 26 February 2021

PinnedCOV-CML - UK retrospective data collection Covid infection in CML patients - volunteers needed.
by sandy craine (Feb 26)

COV-CML; A UK NATIONAL RETROSPECTIVE DATA COLLECTION FOR COVID-19 DISEASE /SARS-CoV-2 INFECTION IN CML PATIENTS
Imperial College collected data back in March/April 2020 to identify covid infection
Category: Clinical trials

Replies: 0

Last updated: 26 February 2021
sandy craine on 26 February 2021

Category: Clinical trials

Replies: 0

Last updated: 26 February 2021

PinnedCML-Co-vax- Study to evaluate Covid Vaccine in CML patients taking TKI therapy - Volunteers needed
by sandy craine (Feb 26)

SEROPROTECTION AGAINST SARS-CoV-2 IN CML PATIENTS RECEIVING TKI THERAPY
IRAS Project ID: 289527; REC reference: 21/SC/0016, Hammersmith Hospital, Imperial College NHS Trust, London UK
Study Summary
Category: Clinical trials

Replies: 0

Last updated: 26 February 2021
Alaina on 3 February 2021

Category: Uncategorised

Replies: 44

Last updated: 3 March 2021

Covid Vaccine
by red21 (Mar 3)

Had the Oxford Astrozenica - i'm a fit male in my mid 30's and i was bed ridden for 24 hours feeling awful. Shakes, sweating, feeling weak, sore muscles. It was awful and im dreading the 2nd

by EvaH (Mar 2)

There are plenty of things not passed by fda that are commonly used in Europe, having passed our standards.
In sinopharms case, its likely that it hasn't been passed by fda or Europe because the

by mil (Feb 28)

Great Eva, good to hear that from you, thank you for letting me know. Here in Peru, people say that this vaccine is not yet authorized by FDA, that was my doubt, i know people in other parts of the

by EvaH (Feb 28)

No problem at all!
Go ahead and get the sinopharm if thats what is on offer. In fact all vaccines are ok for CML people, but I am also your live proof ;)
Category: Uncategorised

Replies: 44

Last updated: 3 March 2021
snowman 35 on 2 March 2021

Category: Treating CML

Replies: 7

Last updated: 3 March 2021

Tfr and Sprycel. Scuba or anyone?
by David Fitz (Mar 3)

Scuba - how long have you been taking the alternate day schedule with 20mg, and how long were you on 20mg every day before that?
I’m reluctant to stop completely as after all sorts of life

by scuba (Mar 2)

Dose de-escalation is a very good protocol. In this way, a patient can learn what lower dose works just as effectively as a higher dose and often with less side effects. Suddenly stopping full dose

by snowman 35 (Mar 2)

Thank all of you for your answers. He told me that he is gonna check it... I will wait to see how my next pcr is and then if every think is good I will try it.!

by sandy craine (Mar 2)

yes Alastair, I think you are right. Scuba's point is also correct - TFR is not to do with which drug but what your response is. Novartis did make an effort to suggest that nilotinib was the
Category: Treating CML

Replies: 7

Last updated: 3 March 2021
sb22 on 1 March 2021

Category: Side effects

Replies: 2

Last updated: 2 March 2021

stroke and nilotinib
by sb22 (Mar 2)

Spoke to my stroke consultant yesterday he said i had 2 strokes because of nilotinib its Caused narrowing of the blood vessels to my brain

There is literature on the internet dating back to

by sandy craine (Mar 2)

If you are at risk of a stroke you should not be taking nilotinib.
Sandy

by sb22 (Mar 1)

has anyone had a TIA whilst taking nilotinib?
Category: Side effects

Replies: 2

Last updated: 2 March 2021
sandy craine on 1 March 2021

Category: Other conditions

Replies: 0

Last updated: 1 March 2021

Covid Vaccines - Webinar 3rd March 4pm GMT
by sandy craine (Mar 1)

On Wednesday 3rd March at 4pm GMT, we have another COVID vaccines webinar.
Tim, Prof. Ellie Barnes and Dr. Anna Goodman will look at the latest data from vaccines logged with ZOE, and this time we
Category: Other conditions

Replies: 0

Last updated: 1 March 2021
Mari_lyn on 28 February 2021

Category: Treating CML

Replies: 3

Last updated: 28 February 2021

Why am I so slow...
by Mari_lyn (Feb 28)

Hi, thank you Denise and Buzz for responding so quickly.
You’re absolutely right that I’ve been tested a bit too often, but that’s partially because I switched doctors

by Felix (Feb 28)

Hi Marilyn,you say you are being treated by one of the best CML experts in the country ,but I am not sure you are .You started Imatinib in July with numbers going down then in only December he

by Buzzm1 (Feb 28)

Marilyn, you are at 7 months; testing less may help to lower your anxiety; every three months is normal. Some CML patients are slower than others.
Wishing you the best,
Buzz

by Mari_lyn (Feb 28)

Hi all,
I just found out my latest bcr-abl results and I’m really disappointed to say the least.
Did any of you experience (somewhat) the same journey...and will it be all right in
Category: Treating CML

Replies: 3

Last updated: 28 February 2021
chrissie on 23 February 2021

Category: Uncategorised

Replies: 8

Last updated: 28 February 2021

Covid vaccines and blood cancers
by chrissie (Feb 28)

I had the Oxford Astra Zeneca one 4 weeks ago. it seems to be the same concern for all the vaccines, though although the data shows that the elderly are protected OK with both vaccines currently

by mil (Feb 28)

Hi Crissie, what vaccine did you receive?
Thank you for let us know.

by Christine R (Feb 24)

I would be very surprised if they had any actual data on the effectiveness in us. I am on the vaccine register as available for trials but i have never been called.
Also i was a participant in

by Deni H (Feb 23)

Hi All
I spoke to my nurse specialist regarding the vaccine. She said that to definitely have the injections but instead of giving me upto 95% protection against Covid it would only be around 70%.
Category: Uncategorised

Replies: 8

Last updated: 28 February 2021
mil on 24 February 2021

Category: Uncategorised

Replies: 5

Last updated: 28 February 2021

Sinopharm Vaccine Covid 19
by EvaH (Feb 28)

Its a inactivated vaccine, you should be ok
Im 4 years post diagnosis and had both sinopharm jabs without issue

by mil (Feb 26)

Thank you AF!

by mil (Feb 26)

Thank u Alex!

by AF (Feb 26)

I received both doses of Sinopharm with no side affects.
Category: Uncategorised

Replies: 5

Last updated: 28 February 2021
TinaOS on 28 February 2021

Category: Children & young people

Replies: 2

Last updated: 28 February 2021

New member
by sandy craine (Feb 28)

Welcome to this forum. One thing we all have in common is the shock felt at diagnosis so you are not alone. However, CML, especially in chronic phase, is treated very successfully since the advent

by TinaOS (Feb 28)

Not sure really.. I'm not very sure about which way the drugs go.. I'm very happy on this so far as zero side affects.. I'm living my life as normal.. Thanks

by snowman 35 (Feb 28)

Why your doc didn t put you in a second generation drug? Sprycel or tasigna? It is very strange!

by TinaOS (Feb 28)

Just like to introduce myself as new member.. Diagnosed in Aug 20.. Worst day of my life 🙈 diagnosed at 180% and on imanitib for 3 months only dropped to 80%.. On Bosulif now with minimal side
Category: Children & young people

Replies: 2

Last updated: 28 February 2021
philmc on 27 February 2021

Category: Uncategorised

Replies: 4

Last updated: 27 February 2021

First BCR/ABL uptick
by An (Feb 27)

Hi,
My husband just went through this recently,but the oncologist was like it is essentially flat,even then we were very scared till the next one,luckily it dropped.Every test will cause some amount

by alexmcpee (Feb 27)

I get it mate I really do because I’ve been there and we all worry come test time. Yes just ride it out try to do things to take your mind of it. Harder said then done being a chronic illness

by philmc (Feb 27)

Thanks for the reassuring comments, Alex. I’ve just got to wait it out I guess. It’s so hard to get on with life as normal with the constant anxiety in the background.

by alexmcpee (Feb 27)

None of us like “blips” but most of the time that’s all they are. I had my first blip at the 2 year mark 0.112% upto.....wait for it...... anti climax.... 0.164%. On paper it
Category: Uncategorised

Replies: 4

Last updated: 27 February 2021
vonnie on 19 February 2021

Category: Uncategorised

Replies: 3

Last updated: 27 February 2021

folic acid
by chrissie (Feb 27)

You're welcome, Vonnie. Take care and keep safe,
Best
Chrissiex

by vonnie (Feb 25)

Hi Chrissie, I apologise for not replying to you personally until now. Thank you very much for your reassuring reply. I was diagnosed on June, 2017 and believe it or not still get anxious if my

by chrissie (Feb 20)

Hi Vonnie
My GP prescribes 5 mg of Folic Aid daily. Have been taking this for about 1 yr so far. My Folic Acid rates are still only 2.6 so obviously I need this supplement.
Best
Chrissie

by vonnie (Feb 19)

hi still wondering has any one on imatinib been advised to take folic acid because their folate level is a bit down
thanks
vonnie
Category: Uncategorised

Replies: 3

Last updated: 27 February 2021
Kimbie3116 on 27 February 2021

Category: Treating CML

Replies: 3

Last updated: 27 February 2021

Help! Mouth sores with Imatinib???
by alexmcpee (Feb 27)

I’ve been having fairly persistent Geographic Tongue since being Nilotinib but no other mouth sores. This is defo TKI as they started when I started meds. They don’t hurt they are just a

by israel (Feb 27)

This is a very interesting topic, as I have had episodes of severe canker sores in the past. Not one, but several injuries at the same time that made it almost impossible to talk and eat. Very

by Buzzm1 (Feb 27)

Kimbie3116, not to worry. You are approaching three and a half years on Imatinib 400mg. Depending on your CML level, which you failed to mention, there is a good chance that you can

by Kimbie3116 (Feb 27)

Hi all. This is my first post. I’m so happy I found this website! I am 47, and was diagnosed with Ph+CML back in November of 2017. I started 400mg of Imatinib and I’ve been in it ever
Category: Treating CML

Replies: 3

Last updated: 27 February 2021
kathvaliao on 26 February 2021

Category: Children & young people

Replies: 7

Last updated: 26 February 2021

Pregnant and Suspected to have CML
by MartinZA (Feb 26)

Hi Kathleen
It is treated, for most of us, through oral medications that are taken once or twice a day. The medications have a very high success rate and, even though they can't cure the disease,

by kathvaliao (Feb 26)

Thank you so much, Sandy!
That’s good news to me. I get worried lately most especially for my baby not just for me. I feel guilty that I might give him a condition because I’m not

by kathvaliao (Feb 26)

Thank you so much, Martin!
Your words encourages me. I most of the time overthink about my condition. Hearing from you makes me less worried.
I actually don’t feel any symptoms right now. I

by sandy craine (Feb 26)

Hi Kathleen,
If you want to send a private message, look at the top right hand section of the header bar next to 'search' - you will see a message icon- looks like an envelope.
Sorry you
Category: Children & young people

Replies: 7

Last updated: 26 February 2021
Karinne on 11 February 2021

Category: Uncategorised

Replies: 16

Last updated: 26 February 2021

NOT DETECTED
by Karinne (Feb 26)

Thanks to all for your kind words. It means a lot.
And I wanted to share an interesting fact about my CML. I stopped treatment after 4 years of Sprycel (2018) because of a pleural effusion and

by Gian P (Feb 25)

Congratulations! Happy for you!

by drarchanaj.adapt (Feb 18)

Great results. How much of vitamin D do you take every day please ??

by RodM (Feb 17)

Great result on undetectable when treatment free!
I stopped Datatinib 18 months ago after 8 years of treatment. PCR at discontinuation was varying between 0.003% and undetectable. My count slowly
Category: Uncategorised

Replies: 16

Last updated: 26 February 2021
Gian P on 25 February 2021

Category: Children & young people

Replies: 1

Last updated: 26 February 2021

BCR ABL READING
by alexmcpee (Feb 26)

I’ll give you an example I am 0.077% (mr3) my doc ignores everything after the 1st 7 so he would say you are 0.07 and to be honest I do when people ask. I think some people just like to be

by Gian P (Feb 25)

Hi everyone
sometimes i read other members BCR test results % different than mine,So i hope to get a straight answer here, so I understand:
my BCR results are 0.070 % the previous month 0.050
Category: Children & young people

Replies: 1

Last updated: 26 February 2021
CdnCML on 16 February 2021

Category: Side effects

Replies: 11

Last updated: 26 February 2021

embarrassing q for the lads
by Michaelwst (Feb 26)

Hi, I have the same issue. Male, just turned 30, started TKI treatment 1st,Jan,2020. Has been always very sportive and never experienced issues with low libido and ED(almost the opposite). I kind of

by Michaelwst (Feb 26)

Hi, I have the same issue. Male, just turned 30, started TKI treatment 1st,Jan,2020. Has been always very sportive and never experienced issues with low libido and ED(almost the opposite). I kind of

by ThomasS (Feb 20)

I will tell you my libido crashed big time as soon as i started on 100 mg of sprycel. Was on 400 mg of gleevec for years and never had a problem. It is definitely the sprycel. It is better now that

by CdnCML (Feb 19)

Yes I definitely read those same things and cut porn out completely a few months ago. I don't think I turned to it too often but maybe I did. So far it hasn't changed things but it's only been a few
Category: Side effects

Replies: 11

Last updated: 26 February 2021
mamodei on 21 February 2020

Category: Side effects

Replies: 5

Last updated: 25 February 2021

Trying Sprycel at 20mg
by mamodei (Feb 25)

My BCR-ABL was 0.0243 when I dropped to 20mg. I only took 25mg for a few days, splitting 50mg pills in half, until my 20mg pills arrived. My numbers went up a bit, but then began

by Gian P (Feb 25)

Maria thank you for sharing!
so, let me understand, your BCR is 0.0274, and you changed from 50 mmg to 25 mmg and now to 20 mmg?
I wish to try that too!
in prospective my BCR IS 0.070 and im taking

by mamodei (Feb 25)

A year follow up to this. My first PCR test after the dose reduction went up, but then it went down a bit, then a bit more, and now a year later I've gotten my best results to date.

by kat73 (Feb 21)

Happy you are happy, Maria! I know EXACTLY what you're talking about. I remember on Gleevec, reducing a couple of times to 300 and 200, the difference in mood (not really the right
Category: Side effects

Replies: 5

Last updated: 25 February 2021
SS86 on 25 February 2021

Category: Side effects

Replies: 5

Last updated: 25 February 2021

Swere Headache & Red eyes / Puffiness / One of the Doctor advising to change from Disatinib to Imatinib
by Felix (Feb 25)

Hi, sorry to hear your wife is suffering on 100 mg Dasatinib I am not surprised that Dose is too toxic.I refused to go on 100 mg and insisted on 50 mg ,research says less is more with

by SS86 (Feb 25)

Thank you John. Your words have cleared quite a bit of doubts and trust me this is what I find beautiful about this forum.
We are planning to revisit our this doctor tomorrow and ask if

by SS86 (Feb 25)

Hi David,
Thanks for your response.
One of the two doctors have recommended this change from Disatinib 100 mg to Imatinib 400 mg while other one has recommended to continue on Disatinib.

by johnw1001 (Feb 25)

Hi,
In respect of your side effects on Dasatinib and in particular the red eyes and puffiness unfortunately some patients on imatinib find that eye issues are quite common side effects as well;I
Category: Side effects

Replies: 5

Last updated: 25 February 2021