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David Fitz on 9 June 2025

Category: Treating CML

Replies: 0

Last updated: 9 June 2025

PinnedVideos 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
JoeP on 20 June 2025

Category: Drug-drug interactions

Replies: 0

Last updated: 20 June 2025

Anybody taking generic Nilotinib
by JoeP (Jun 20)

This month I was informed that my healthcare provider will start using generic Nilotinib. To be honest I didn’t think the generic was going to be yavailable until sometime near the end of the decade
Category: Drug-drug interactions

Replies: 0

Last updated: 20 June 2025
Mick E on 2 February 2022

Category: Treating CML

Replies: 15

Last updated: 17 June 2025

Low dose Nilotonib
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.

by Gian P (May 12)

Thank you for your feedback and great job! I will do my testing tomorrow, cross. your fingers fingers everything is good! Thank you again for sharing.
Category: Treating CML

Replies: 15

Last updated: 17 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
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
scuba on 14 May 2025

Category: Uncategorised

Replies: 12

Last updated: 6 June 2025

TFR report May 2025
by JoeP (Jun 6)

Interesting. I found a little snippet on the transcripts. See below.
B2A2=e13a2: I have this transcript also, however, my TFR did not stick.

Soon after I dropped from TFR, I found info that

by scuba (Jun 6)

b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL

by JoeP (Jun 6)

Scuba which BCR/ABL transcript do you have, e13a2 or e14a2 or e1a2? My guess it’s either e14a2 or e1a2.

by Blarn (Jun 6)

Re trisomy 8 - guess I misremembered, or confused you with someone else.
Regarding TFR, it seems like in theory doctors could test bone marrow for presence of LSCs and based on that predict whether
Category: Uncategorised

Replies: 12

Last updated: 6 June 2025
Zzyzxuk on 4 June 2025

Category: Side effects

Replies: 0

Last updated: 4 June 2025

Dasatinib - tolerated it for four years, but suddenly now makes very VERY nauseous
by Zzyzxuk (Jun 4)

I've been on Dasatinib for over four years, tolerated it very well, and don't even recall it making me ill when I first started taking it.
A few months back, I got a bit lax about taking my pills
Category: Side effects

Replies: 0

Last updated: 4 June 2025
MarkP66 on 28 May 2025

Category: Treating CML

Replies: 4

Last updated: 2 June 2025

Imatinib reduction below 400mg
by MarkP66 (Jun 2)

Thanks Alastair for sharing the links and advice.
I am definitely going to ask for the reduction at the next review
Mark

by MarkP66 (Jun 2)

Many thanks Felix for sharing
Mark

by Felix (Jun 1)

Hi, I changed from Imatinib 400 mg because of dreadful side effects and changed to Dasatinib ,took 50 mg at the start then when undetected which didn’t take very long at all I lowered to 20 mg,now I

by AlastairC (May 28)

Hi Mark
I'm 18 years into taking imatinib, starting on 400 mg after diagnosis aged 50. The thread on the link below goes through the journey of reducing to 200 mg for 12 months, then a TFR attempt
Category: Treating CML

Replies: 4

Last updated: 2 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
Kamil on 18 May 2022

Category: Food & fitness

Replies: 7

Last updated: 15 May 2025

Vitamin D and other supplements
by Giaseven (May 15)

I've been taking a good multivitamin and vitamin D regularly, and it seems to help with my energy. For sleep, I looked into natural sleep aids for athletes because I train a few times a week and

by Felix (May 21)

Hi, try Nutravita for all your vitamins in the UK ,they do a good Curcumin.They are an amazing company to deal with ,great prices ,and occasional freebies .Open an account on their main site

by scuba (May 20)

Yes - Arms shoulders legs can do it, but back is best. And amount of time. Lying flat in the sun at the beach at noon in summer for about 20 minutes can provide plenty of vitamin D.

https://www.

by Kamil (May 20)

I have found this product which is 1000mg, the ingredients and values seems to be okay. Could you confirm if this is a good c3 product, its hard to find sabinsa c3 complex here in the UK,but this
Category: Food & fitness

Replies: 7

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