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Mick E on 2 February 2022

Category: Treating CML

Replies: 16

Last updated: 29 June 2025

Low dose Nilotonib
by hannibellemo (Jun 29)

Thanks for catching those incorrect dates, Colorado Guy.! It should have read 2020 and 2022.

by ColoradoGuy (Jun 17)

I think you have your dates wrong about nilotinib. 2010 and 2012?

by hannibellemo (May 23)

Hi, Mick E. I've maintained CMR for over 3 years on nilotinib 150mg daily. I was dxed in 2008. I developed liver toxicity on imatinib immediately. Went on dastinib in 2009 and had effusions off and

by Sav_5 (May 15)

You are welcome Gian! I cross my fingers for you and hope to read soon good news and keep enjoying a small glass of wine!! Keep us informed! Thank you.
Category: Treating CML

Replies: 16

Last updated: 29 June 2025
Agile on 27 November 2021

Category: Other conditions

Replies: 4

Last updated: 27 June 2025

CML and Dental Issue
by Monacomer (Jun 27)

My dentist was cautious too because of my CML meds and how they might affect healing. I ended up seeing someone who really understood both complex dental stuff and overall health issues—Dr. Gross in

by (Feb 10)

Broken, crooked, missing teeth in the front do not add to our attractiveness and repel people from us. That's why we try to smile as little as possible and not show our front teeth. That's

by MiguelLucas (Feb 10)

What serious dental problems have you encountered?

by thomas.c (Nov 27)

Dear Amit,

I had multiple wisdom teeth extractions, they were all in bad shape, and a piece of my jaw bone had to come with them. It wasn’t fun, but CML didn’t interfere with
Category: Other conditions

Replies: 4

Last updated: 27 June 2025
suvankardas on 21 June 2025

Category: Organising your life

Replies: 0

Last updated: 21 June 2025

Cardiovascular health on IMATINIV
by suvankardas (Jun 21)

2 years on IMATINIV 400. Detected at the age of 42 I have been experiencing all the possible side effects . But now I feel my heart has taken toll. Now-a-days the rapid heartbeat and pressure
Category: Organising your life

Replies: 0

Last updated: 21 June 2025
PhilipDavid on 11 June 2025

Category: Getting help

Replies: 5

Last updated: 17 June 2025

Help and advice on surgery. Back decompression surgery. Any preparation advice please.
by David Fitz (Jun 17)

For what it's worth, I had a pretty big abdominal surgery about 10 years ago when I was on dasatinib. Everyone agreed beforehand that there was no need to stop the medication and there was no

by AlastairC (Jun 16)

I was on 200mg imatinib when I had a whole hip replacement 3 years ago. I was advised to stop taking the tablets a week before the op, and didn't restart for 4 weeks while I was having anticoagulent

by JoeP (Jun 14)

Yes good luck Philip. I took a few days off for some oral surgery while on Imatinib. You should be fine, keep your oncologist in the loop.
Joe

by PhilipDavid (Jun 12)

Thank you for info. Philip London
Category: Getting help

Replies: 5

Last updated: 17 June 2025
jriccoboni on 2 June 2025

Category: Treating CML

Replies: 9

Last updated: 16 June 2025

TFR question
by jriccoboni (Jun 16)

Interesting. Maybe the lab that my Doc uses just does not show my those details. Maybe he can see it on his end.

by JoeP (Jun 15)

I found this:

The p210 and p190 in the context of BCR-ABL1 refer to different protein isoforms produced by the fusion of the BCR and ABL genes. The e13a2 and e14a2 transcripts are associated

by jriccoboni (Jun 10)

My last report said this
p210 Value (BCR-ABL): Your value is Positive. p210 BCR-ABL1 fusion transcripts detected.
International Scale <0.0030
Method:

Xpert BCR-ABL1 Ultra utilizes real-

by JoeP (Jun 6)

Just look for e13a2 or e14a2 on your PCR report. For years I never paid attention to them.
Category: Treating CML

Replies: 9

Last updated: 16 June 2025
Justine on 12 June 2025

Category: Treating CML

Replies: 3

Last updated: 16 June 2025

TFR journey begins
by Sav_5 (Jun 16)

Justine, my best wishes for remaining out of the TKIs!! Good luck!
Savvas

by AlastairC (Jun 16)

Justine, best wishes for your TFR. Alastair

by JoeP (Jun 14)

Good luck! Keep us updated with your progress.
Joe

by Justine (Jun 12)

Hello - Yesterday was Day 1 of my TFR journey. Diagnosed April 2017, on imatinib 400mg until around early 2023 when switched to dasatinib. Achieved Undetectable shortly thereafter. So 2 years on
Category: Treating CML

Replies: 3

Last updated: 16 June 2025
liza on 12 June 2025

Category: Blood tests

Replies: 6

Last updated: 15 June 2025

Advise on anyone who's taking dasatinib on alternate days
by liza (Jun 15)

Hey, thank you for your suggestions. Yeah I always feel in pain, as if my body is slowly breaking down. I have a very good nutritional diet, and think thats been one of the reasons I am not worse

by Felix (Jun 15)

Sorry but I think you need to change you doctor he or she is a bit of a nut job .Less is more with Dasatinib you could cope on 20 mg now I think .100 mg is far too toxic no wonder you feel bloody

by liza (Jun 15)

Hi, and thanks for your reply. I know, that's what I was thinking. I have been on remission pretty much since I started the treatment, but then was unstable again due to a liver inflammation. When I

by liza (Jun 15)

Hey, thanks for your reply, and sorry for perhaps the confusion, but what it's that since the heamatologist have found out that the 100mg dosage might be affecting the inflammation on my chest, for
Category: Blood tests

Replies: 6

Last updated: 15 June 2025
Seffy on 13 June 2025

Category: About CML

Replies: 1

Last updated: 15 June 2025

Trying to conceive
by David Fitz (Jun 15)

Hi,
It’s safe to father a child on dasatinib without interruption of therapy. This has been established for quite a few years now, and will be explicit in the ELN 2025 CML guidelines which were

by Seffy (Jun 13)

My husband has cml and he is on dasatinib. Any guidance and pre experience on how does it affect male fertility ??
Category: About CML

Replies: 1

Last updated: 15 June 2025
David Fitz on 9 June 2025

Category: Treating CML

Replies: 0

Last updated: 9 June 2025

Videos and slides from CML Horizons 2025 now available
by David Fitz (Jun 9)

We’re excited to announce that the videos and presentations from CML Horizons 2025 are now available! Whether you were with us in person, joined virtually, or couldn’t attend this year, now is the
Category: Treating CML

Replies: 0

Last updated: 9 June 2025
healthyhabits on 28 May 2025

Category: Organising your life

Replies: 2

Last updated: 8 June 2025

Have you experienced gaslighting?
by healthyhabits (Jun 8)

SO TRUE, Winnie. Thank you for sharing! I hadn't even considered the inherent bias in my gender. You gave me a new perspective on this, so I appreciate it.
Olivia

by Wstevenson (May 30)

Hi, O,

I have definitely experienced gas lighting regarding side effects, with both of the oncologists I've seen (and their fellows). Even to the point where I printed out lists of side

by healthyhabits (May 28)

Hi community, I just had a visit with my onc and was seen by her NP. I went off therapy a couple of months ago in order to freeze my eggs, and within a couple of months I was experiencing the same
Category: Organising your life

Replies: 2

Last updated: 8 June 2025
snowman 35 on 6 September 2024

Category: Drug-drug interactions

Replies: 7

Last updated: 28 May 2025

Corticosteroids cream
by Giaseven (May 28)

I’ve had steroid creams thin my skin too, especially after long-term use on sensitive spots. What helped me was switching to something gentler and giving my skin a break in between treatments. I

by David Fitz (Sep 15)

You’ll find it in any pharmacy. Super common.

by snowman 35 (Sep 13)

Can I find this cream as a brand or they make it in the pharmacy?

by johnw1001 (Sep 12)

You could try hydrocortisone cream 1% w/w (or up to 5%) or a betnovate cream -and alternate it with the existing prescription perhaps, as constant use of the same cream day after day can lead to
Category: Drug-drug interactions

Replies: 7

Last updated: 28 May 2025
Kat82 on 15 May 2025

Category: Organising your life

Replies: 9

Last updated: 21 May 2025

Just diagnosed
by Felix (May 21)

Hi, scary at first but try not to worry .If your doctor offers you 100 ml Dasatinib please refuse it’s too high you will get headaches and could cause lung problems it’s too toxic .My doctor isn’t a

by joey (May 20)

Hi Kat,
sorry to hear you are having a difficult time but glad you have found your way to this forum. I was diagnosed in Jan 24 aged 46, with a busy full time job and with a 5 and 6 year old at the

by Kat82 (May 20)

Thanks so much, Manda! Really appreciate your response and the support. It helps such a lot to know that other people are going through a similar journey. Not sure it’s something that anyone else

by Amanda Lax (May 20)

Hi Kat, you'll get there, honestly, im nearly into a year now, have been on Imatinib, and now Bosulif, every TKI has its foibles!

Just try and take it easy, as others have said. You're here,
Category: Organising your life

Replies: 9

Last updated: 21 May 2025
sandy craine on 27 February 2018

Category: Side effects

Replies: 2

Last updated: 15 May 2025

Magnesium supplementation
by snowman 35 (May 15)

Hi Scuba!Today I bought magnisium citrate.I have ibs.Do you know if this form of magnisium can affect my ibs?

by scuba (Feb 27)

Adding to this thread on Magnesium. There are several different forms of Magnesium and are absorbed differently by the body.
Below is a link describing each one and what form is best to take

by sandy craine (Feb 27)

There is some discussion and a link (provided by scuba) on another thread about magnesium supplementation and how it can counter some side effects of TKi therapies. I thought I would start a
Category: Side effects

Replies: 2

Last updated: 15 May 2025
Misbah on 15 May 2025

Category: Blood tests

Replies: 1

Last updated: 15 May 2025

Coming off Dasatinib
by JS001 (May 15)

Hi Misbah,
Like yourself, I am currently on Dasatinib and had to stop taking it for 10 days last year due to being admitted to Hospital with Sepsis. Unfortunately I lost Deep Molecular Remission (

by Misbah (May 15)

Hi all
I was diagnosed with CML in November 2021 when I was 27, since then I have been on Dasatanib and now since September 2024 I have been in a deep remission. Up until 4 weeks ago I was
Category: Blood tests

Replies: 1

Last updated: 15 May 2025
David Fitz on 30 April 2019

Category: Uncategorised

Replies: 30

Last updated: 14 May 2025

Dasatinib dose reduction not going quite to plan
by scuba (May 14)

This will sound 'counter-intuitive', but you might consider lowering your sprycel dose to 40 mg. Sprycel can actually work better on a lower dose.

Sprycel targets other kinases which suppress

by Tiger (May 14)

Hi Scuba,

I just had my PCR Test and you were correct it went down from .24 to .12 on 80 mg of Sprycel. I am still in my 1st Year. 6 months on Sprycel and I am hoping it will continue to drop

by Tiger (May 14)

80 mg Sprycel

by scuba (Apr 29)

What dose sprycel are you taking?
The range of values, 0.12,0.17, & 0.24 are within the precision of the PCR test. You are in your first year of treatment where a lot of bone marrow remodeling
Category: Uncategorised

Replies: 30

Last updated: 14 May 2025
bdmemphis on 4 January 2025

Category: Side effects

Replies: 14

Last updated: 13 May 2025

Anyone else experience cognitive/memory issues while on TKIs?
by Gian P (May 13)

Hi everyone, yes, it seems every TKI drug have fatigue in common, however, im glad that you mentioned memory loss, because I never knew that could be a side effect, me too have a bit of strange

by Bill Yellowley (Mar 9)

Hi

This is my first visit to this excellent forum for a very long time. When I logged on I was amazed to see it was 17years and 5 hours ago that I first joined .
I suffered memory problems

by Neebs71 (Mar 5)

Winnie. I moved to Dasatinib 10 months ago after 8 months on Imatinib (lack of response) and have experienced similar symptoms you’ve described.

I find it difficult to recall names and my

by suvankardas (Feb 9)

I have been on Imatiniv 400 for about 2 years. After few months of detection my mother doctor referred me to a psychiatrist who put me on Mitrazapine. I definitely was under affect of some mental
Category: Side effects

Replies: 14

Last updated: 13 May 2025
Evie on 27 March 2025

Category: Uncategorised

Replies: 2

Last updated: 12 May 2025

Supplements
by Gian P (May 12)

Gleevec was my first TK drug I took and had to stop because would lower my platelet count to a level that was unsafe, now I am taking Tasigna 300 mg and probiotic every morning, I had some issues

by joey (Apr 21)

Hi Evie
i am not taking any supplements but am adjusting my diet after some initial kidney issues were flagged after 12 months on Imatinib. not sure how much difference it will make as its the

by Evie (Mar 27)

Hi I’m currently on 300mg imatinib and was wondering if anyone takes probiotics or any type of supplements to support liver and kidneys.
Category: Uncategorised

Replies: 2

Last updated: 12 May 2025
johnw1001 on 25 April 2025

Category: Uncategorised

Replies: 3

Last updated: 11 May 2025

Covid vaccination Spring 2025
by JoeP (May 11)

Thanks for the heads up.

Here in the states there is no talk at all of the new Covid shot.

I’m wondering if it will either be ignored altogether or denied to us by law…
Good for you

by Christine R (May 11)

I had a call from my GP Surgery for mine and booked it but as i needed to change it and it is a pain doing that with my GP's system i cancelled it there and re booked at a local pharmacy. No

by David Fitz (May 11)

Hi John,
I got a text message saying it was time for mine, and like you it was at a pharmacy but I had to book - no walk in available near me. But may as well have made no difference as there were

by johnw1001 (Apr 25)

Hi All in UK,
I have just had another shot of the Covid vaccination-this time it was Moderna .I suffered just a sore arm but otherwise I had no other side effects.
Those who qualify are over 75s and
Category: Uncategorised

Replies: 3

Last updated: 11 May 2025
David Fitz on 14 March 2025

Category: Uncategorised

Replies: 3

Last updated: 11 May 2025

London Haematology Patients & Carers Congress - 9th May 2025
by David Fitz (May 11)

Hi Wendy! I’m glad you found it was a worthwhile day. When planning, we were worried that we didn’t have enough material to fill the two hours, but in the end we could have done with three! We are

by WENDY HEARN (May 11)

Just to say thank you David for your input into the CML afternoon at the HPCC25. The two hours went much too quickly. Your role play session with Dr Hannah was very useful and entertaining.

by Christine R (Mar 17)

Deleted

by David Fitz (Mar 14)

Please join us in London for the annual Haematology Patients and Carers Congress. There will be a special CML session at 14:30 on the 9th of May in Westminster, London chaired by myself and Dr Guy
Category: Uncategorised

Replies: 3

Last updated: 11 May 2025
Tiger on 7 May 2025

Category: Treating CML

Replies: 0

Last updated: 7 May 2025

BCR Testing
by Tiger (May 7)

Thank You Scuba,

I am on 80 mg of Sprycel! I am also taking Vitamin D, Zinc, and Vitamin C and Curcumin. Is there any I am missing. The doctor has ordered a mutation study for me. I am waiting
Category: Treating CML

Replies: 0

Last updated: 7 May 2025