CML Horizons 2024 Videos and Presentations

iCMLf Publicaions.

iCMLf Forum 2022: The Next Big Challenges in CML? Webstreams

iCMLf publications: A selection of interesting articles on CML from peer-reviewed journals

You are here

Forum

Amanda Lax on 1 December 2025

Category: Uncategorised

Replies: 2

Last updated: 1 December 2025

Scemblix advice please
by Amanda Lax (Dec 1)

Thanks very much David, and for your prompt reply, its easy reading the instructions, but now i understand why! I didnt know it was calorific stuff.

I've got to have some surgery, hopefully

by David Fitz (Dec 1)

Hi Amanda,
It's really about what works best for your routine as you need to take it at approximately the same time each day.
So for the fasting, it's about avoiding things with calorific value. So

by Amanda Lax (Dec 1)

Hi everyone, a while since i posted, but ive learned so much from this brilliant site.

I've just been prescribed Asciminib which i know is relatively new in the UK, and i note the difference
Category: Uncategorised

Replies: 2

Last updated: 1 December 2025
argearge on 15 November 2025

Category: Getting help

Replies: 6

Last updated: 1 December 2025

Cml advise asked
by argearge (Dec 1)

Results from last week came today. 0.03% IS..,

by igennem (Nov 24)

As I tend to experience and hear almost everything below 0.1 is just rounding error. Only log reductions or rises are interesting.

I heard many times that 0.02 and for example 0.06 is actually

by argearge (Nov 17)

Yes I know that. But I hope to deepen my responses.

by JoeP (Nov 16)

Argearge,
I would personally prefer Imatinib because it is less hassle in dosing. If you don’t have any side effects then that’s a plus for sure. I think generally speaking Imatinib may be
Category: Getting help

Replies: 6

Last updated: 1 December 2025
Wendy Turner on 11 August 2022

Category: About CML

Replies: 8

Last updated: 30 November 2025

Imatinib - why is the generic, Amarox different?
by Alison Couch (Nov 30)

I’m so glad it’s not just me. The taste is horrendous and they start breaking down as soon as I put them in my mouth even if I try making my rouge as angry as possible as I put them in my mouth. The

by Copey399 (Jan 18)

I keep getting these Amorox ones every couple of months so I looked them up and it sent me here. I thought, oh yes, somebody who is exactly the same as me with them ... and then realised it

by Copey399 (Oct 2)

I agree about the taste. It's really unpleasant. I couldn't tolerate the one 400mg pill but after adding them one one at a time and working up to 400mg I was doing well on 4 x

by KMH (Aug 30)

Hello Wendy,

I am currently on Imatinib. I've been given several different generic brands in the last year and a half. Dr. Reddy's, Sandoz, Teva and now Amarox. Like you, I was surprised at
Category: About CML

Replies: 8

Last updated: 30 November 2025
michelle on 28 November 2025

Category: Uncategorised

Replies: 5

Last updated: 29 November 2025

Dasatinib.. Pleural Effusion after post 10 year treatment
by michelle (Nov 29)

Thank you David,

I will definitely be asking!

Michelle

by michelle (Nov 29)

Thank you David,

I will definitely be asking!

Michelle

by David Fitz (Nov 29)

Asciminib is the newest one that’s available on the NHS, but only to patients as a 3rd line option. Lots of people have done really well on it and find it has fewer side effects than other TKIs. I’

by michelle (Nov 29)

Hi David

I am in the UK.

My oncologist is going to start me back on 20mg once the effusion has resolved.

She said there are other drug options if not. I don’t know about the newer
Category: Uncategorised

Replies: 5

Last updated: 29 November 2025
PhilS on 28 November 2025

Category: About CML

Replies: 2

Last updated: 28 November 2025

Differences in generic imatinib manufacturers?
by PhilS (Nov 28)

Thanks for the info. Interesting, but not surprising.

I've been unable to find a low-price source of the Sandoz generic here yet; that would naturally be my first choice, but I've located a

by David Fitz (Nov 28)

I got sight of an unpublished report a few years ago about how much imatinib was actually in a 100mg across various manufacturers. To cut a long story short, they were not all the same but Glivec /

by PhilS (Nov 28)

Hi folks,

I've been on Gleevec (the US spelling for Glivec lol) for CML since 2018, and have been in deep molecular remission for a few years now.

I received the medication via the
Category: About CML

Replies: 2

Last updated: 28 November 2025
Misbah on 12 November 2025

Category: Treating CML

Replies: 2

Last updated: 27 November 2025

Pregnancy and interferon
by David Fitz (Nov 27)

Misbah,
If you are comfortable reading more technical literature, there was a paper published just a few months ago about managing CML and pregnancy,
https://www.cml-foundation.org/news3/2401-how-i-

by David Fitz (Nov 24)

Hi Misbah,
Interferon is sometimes given in pregnancy when numbers start to rise. There are a couple of types of interferon, and side effects are different. Pegylated interferon is tolerated better

by Misbah (Nov 12)

Hi all
I am 31 years old and finally pregnant after being diagnosed with cml 4 years ago and waiting so long for this moment. I went in to remission last year and came off my Dasatinib in April this
Category: Treating CML

Replies: 2

Last updated: 27 November 2025
JoeP on 20 June 2025

Category: Drug-drug interactions

Replies: 7

Last updated: 24 November 2025

Anybody taking generic Nilotinib
by JoeP (Nov 24)

Yes healthcare is a scary “row to hoe” these days in the states. Seems like it’s changing by the day. For people like us who have to depend on expensive drugs to survive it can be quite unnerving.

by hannibellemo (Nov 24)

Hi, Joe
I'm a volunteer SHIIP counselor for Iowa. We help people going on Medicare, review plans for Open Enrollment, help with insurance payment issues, etc.
I was looking at my EOB for the first

by JoeP (Nov 5)

Hanni,
I would keep in touch with your health plan on this issue. They will probably change back to the generic. I can’t see them resorting back to the more expensive option. But if you do go back

by hannibellemo (Oct 28)

JP,
I haven't opened it yet, but I received my first generic nilotinib. I kept getting my meds when I was trying TFR because I really didn't have any faith it would work for me. Now I have a couple
Category: Drug-drug interactions

Replies: 7

Last updated: 24 November 2025
Vikram on 15 November 2025

Category: About CML

Replies: 0

Last updated: 15 November 2025

CML and marriage
by Vikram (Nov 15)

Can I marry a woman with type 1 diabetes?
Look at some profiles on a diabetes matrimonial site.
I couldn't find a single girl with CML cancer on any matrimonial site.
Look at profiles on matrimony
Category: About CML

Replies: 0

Last updated: 15 November 2025
anasiin2 on 26 May 2024

Category: Treating CML

Replies: 20

Last updated: 12 November 2025

Not achieved MMR , BCR-ABL UP again .. Really need help
by anasiin2 (Nov 12)

Thanks for breaking that down! The control gene example really makes sense now, I didn’t realize how much those numbers can swing just because of sample size. Good to know that 0.071 vs 0.09 isn’t a

by David Fitz (Nov 11)

I would say you have stabilised! You achieved MMR in March (yay!), and have held it since then for 9 months with a moderate downwards trend. 0.09 isn’t really an increase on 0.071, they are well

by JoeP (Nov 10)

You’re doing quite well in my book. It took me 5 years to reach MMR. Keep up the good work, you’re doing fine.

by anasiin2 (Nov 10)

Hello All,
I just wanted to share an update on my progression. It’s been over three years since I started treatment with Imatinib, followed by Bosulif. In January 2025, I switched to Scemblix and
Category: Treating CML

Replies: 20

Last updated: 12 November 2025
suvankardas on 8 November 2025

Category: Side effects

Replies: 4

Last updated: 10 November 2025

Concerned about Side effects of Ponatinib 30mg
by suvankardas (Nov 10)

Hello David you have always been my help at every stage of my disease. Relieved to know about the dose related complications. Doc is starting with 3mg/day and will reduce the dose to 15mg as you

by rambler (Nov 10)

Hello,

I was diagnosed with CML in early 2022. I have been on Ponatinib since January this year. Started on 15mg. Then increased to 30mg In February. Since May I have been on 30/45 mg on

by JoeP (Nov 9)

David’s insightful post sounds very reassuring to me.

Suvan, switching TKIs is never easy but you look like a young guy from your pic and that will work in your favor.

Perhaps a way to

by David Fitz (Nov 9)

Hi,
I understand why this feels super scary, but maybe I can offer you some hope.
The really nasty side effects of ponatinib are heart related, but they are most strongly correlated to the 45mg
Category: Side effects

Replies: 4

Last updated: 10 November 2025
suvankardas on 11 October 2025

Category: Blood tests

Replies: 8

Last updated: 7 November 2025

Sudden rise in BCR ABL IS
by JoeP (Nov 7)

Suvankardas, you may want to start a thread asking for others in this forum to chime in on their use of Ponatinib. I know there are a few out there. I would like to see what people’s view is on it.

by David Fitz (Nov 7)

Ponatinib was the first TKI that was active against t315i, but today there are other options. Asciminib, at higher doses, is also effective but it’s not approved for this use in all countries (is in

by JoeP (Nov 7)

From what I find with a simple search online, it appears Ponatinib is designed to treat this particular CML mutation.
JP

by suvankardas (Nov 6)

It’s T315I mutation.
Category: Blood tests

Replies: 8

Last updated: 7 November 2025
kat73 on 18 September 2025

Category: Uncategorised

Replies: 8

Last updated: 1 November 2025

Scemblix and Prilosec (Omeprazole)
by kat73 (Nov 1)

Yes, I started omeprazole on Sept 22nd. I had been on Scemblix about 6-1/2 weeks by then. My next PCR will be on Nov 13th. I’ll let you know!

by JoeP (Nov 1)

Kat,
Have you started with omeprazole yet? If so can you let us know how your BCR/ABL goes in mid November. I ask because, as I mentioned in my earlier response, my numbers dropped significantly

by kat73 (Oct 30)

Pat - How nice to hear from you! I think of you more often than I post. H2 antagonists like fomatidine could be a way around this conundrum, but I think right now, for the 8 week "healing" period

by kat73 (Oct 30)

Joe - Thanks for the positive info. It's certainly what I want to hear!
Category: Uncategorised

Replies: 8

Last updated: 1 November 2025
nilotinib on 30 October 2025

Category: Uncategorised

Replies: 3

Last updated: 1 November 2025

Shingles vaccine
by JoeP (Nov 1)

I took the shingles vaccine while on Imatinib and didn’t have any issues.

by nilotinib (Oct 31)

Thank you very much David.

It was bothering me.

by David Fitz (Oct 31)

It’s totally safe to have the Shingrix vaccine for shingles, as it is not a live vaccine. The older one is live, and should be avoided.
David.

by nilotinib (Oct 30)

Is it safe to have the shingles vaccine while taking imatinib?
Category: Uncategorised

Replies: 3

Last updated: 1 November 2025
LouiseS on 19 October 2025

Category: Side effects

Replies: 1

Last updated: 28 October 2025

Stroke as a side effect of Sprycel
by hannibellemo (Oct 28)

Louise,
Thank you for this post about your husband's stroke - I'm glad he is doing so well. I know the first thing I tend to do is blame all of my illnesses on my medication or CML. This is a good

by LouiseS (Oct 19)

Hi there

This site was such a source of comfort and knowledge when my husband was diagnosed 8 years ago with CML. He responded very well to Sprycel ( 50 mg) with few side effects and this past
Category: Side effects

Replies: 1

Last updated: 28 October 2025
snowman 35 on 9 October 2025

Category: Drug-food interactions

Replies: 1

Last updated: 27 October 2025

Low testosterone
by PhilipDavid (Oct 27)

Hi.
I was diagnosed with CML 10 years ago , I have been on imatinib and my PCR is 0.005. Some 4 years ago my blood tests were showing very low Testosterone levels, low free T levels plus all the

by snowman 35 (Oct 9)

Hi all

Today is had my testosterone results about my testosterone and all the hormones that may be responsible for low testosterone.Every thing came back norma except my free testosterone
Category: Drug-food interactions

Replies: 1

Last updated: 27 October 2025
ckquinn on 31 August 2020

Category: Side effects

Replies: 4

Last updated: 22 October 2025

Breaking teeth
by barry33 (Oct 22)

I’ve been in a similar spot with constant dental issues and finally had to consider implants. If anyone’s around Ohio, I went with Dental Implants in Eastlake Ohio https://jeffreygrossdds.com/

by scuba (Jan 12)

Vitamin D3 + vitamin K2 = teeth strength like steel.

https://alivenhealthy.com/2021/03/02/vitamin-d3-and-k2-how-to-reminerali...

by saseder (Jan 12)

Maybe you lack some vitamins? Calcium?

by Nimbus2 (Aug 31)

I initially adhered to the mantra "you cannot blame imatinib for all of your ills". However, having recently changed from imatinib to dasatinib, I can see that imatinib was responsible for
Category: Side effects

Replies: 4

Last updated: 22 October 2025
pin on 16 October 2025

Category: Uncategorised

Replies: 11

Last updated: 20 October 2025

How to hold on to my TFR?
by 3oK@ (Oct 20)

You definitely need a prescription. I purchase Besremi 250 mcg pens which are basically syringes with dose dials, so I get 5 doses in each pen. This is ropeginterferon alpha-2b, but there is also 2a

by 3oK@ (Oct 20)

Yes, the tiredness lasted only for the first 3-4 weeks and usually manifested the day after the injection and went on for a day or 2. Then in the 2nd month I got a bit of brain fog which I noticed

by pin (Oct 20)

Do you need a prescription for Interferon? Is it also tablets now? I'm sure it used to be injections back in the day...

by pin (Oct 20)

@ JP Thanks, honestly - this is really helpful advice and this is what I am planning to do, as well as increasing my vitamin D (sunshine) intake :) and no worries about hijacking, I am also really
Category: Uncategorised

Replies: 11

Last updated: 20 October 2025
annsmith on 10 October 2025

Category: Side effects

Replies: 3

Last updated: 15 October 2025

Asciminib
by annsmith (Oct 15)

I started having heart rhythm problems that went away as soon as I quit it. The other side effects I was dealing with although I did end up with a stroke which I had no idea I had and they found it

by hannibellemo (Oct 14)

Ann, do you know why you are being switched from a TKI that worked for you? I also was unable to maintain TFR for more than 3 months, but I went back on 150mg Tasigna once a day and quickly regained

by bob guimond (Oct 11)

I have been on asciminib 40 mg for 4 months+.

after being off dasatinib med for 5 weeks due to facial allergy, I started asciminib. my bcr/abl on asciminib went from 0.3% to 0.0007% over 3

by annsmith (Oct 10)

So I'm being switched to Asciminib from 20mg Dasatinib which got me to undetected within 4 months. Originally on imatinib for 2 months and then had to quit because of liver toxicity. I tried TRF
Category: Side effects

Replies: 3

Last updated: 15 October 2025
alexmcpee on 16 August 2023

Category: Side effects

Replies: 12

Last updated: 8 October 2025

Joint pain - later on in treatment
by David787 (Oct 8)

Tonic water works extremely well for cramp for me, but I have not heard of it used for joint pain before…
David

by JoeP (Oct 7)

Hey Al. So you’re on 600mg and at 4.5. I was able to achieve MR5 at 600 but I couldn’t take it, the effects were too much. I cut back to 450 and I remained at MR5 for a year so at that point I cut

by alexmcpee (Oct 6)

Hi mate
Been a while I have posted on here. The joint pain persists mainly in my elbows and left hip like you, the pain is similar to a syatica too. I raised it with my haemo last month where I had

by JoeP (Sep 20)

No matter how many times I go through an orthopedic episode, especially the ones that last over a week, I get depressed and frustrated. I would say those exact emotions are what actually help you
Category: Side effects

Replies: 12

Last updated: 8 October 2025
Jacqueline Allmark on 28 July 2025

Category: Side effects

Replies: 1

Last updated: 6 October 2025

extreme fatigue of rapid onset, sweating, collapse
by kel1arthurs (Oct 6)

Hope you’re ok …I was on holiday in Lincoln the other week …got up night for a drink and collapsed ..still don’t know why ..then getting tight chest discomfort ..having tests echo and 24 hr tape but

by Jacqueline Allmark (Sep 1)

thank you I am contacting the GP today

by PhilipDavid (Jul 30)

Hi. I have these attacks and they are due to my type 2 diabetes. Get your blood sugars checked out.

by Jacqueline Allmark (Jul 28)

I was diagnosed with CML 2019 mostly okay on Imatinib 300mg daily good response However I suffer from the above symtoms occasionally but last nignt I had an exteme episode.I was just watching
Category: Side effects

Replies: 1

Last updated: 6 October 2025