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ThomasS on 15 April 2026

Category: Uncategorised

Replies: 1

Last updated: 19 April 2026

Undetected after one year from Sprycel TFR
by Karinne (Apr 19)

Way to go!!!! Onwards and upwards.

by ThomasS (Apr 15)

I wanted to post also after reading Karinne's post. I too had bad pleural effusion and had lungs drained 2 liters from both lungs. Stopped Sprycel and after one year still undetected. First
Category: Uncategorised

Replies: 1

Last updated: 19 April 2026
johnw1001 on 16 April 2026

Category: Treating CML

Replies: 2

Last updated: 19 April 2026

Covid jab in UK for all blood cancer patients
by johnw1001 (Apr 19)

Hi Aliistair,

Yes I read that immunity that we may have built up from previous jabs may have started to wane .

Friends of mine who dont have CML but are over 75 but decline the jab

by AlastairC (Apr 19)

Hi John
NHS Wales sent a letter with an appointment for my next Covid jab - I think this will be number 10 - which arrived yesterday. The appointment was on my birthday, for which my wife already

by johnw1001 (Apr 16)

To All,

If in UK dont forget that as a blood cancer patient or as an over 75 you qualify for the the latest Spring/Summer top up jab .As usual if you go into the NHS site or call 119 you can
Category: Treating CML

Replies: 2

Last updated: 19 April 2026
David Fitz on 17 April 2026

Category: Uncategorised

Replies: 2

Last updated: 18 April 2026

”See My Life” - with Novartis.
by bob guimond (Apr 18)

thank you.

this site is a blessing.

I got on this site for advice. I was about to start a 3rd tki, and many times for past 3 years when I looked to the general on-line internet for a

by Amanda Lax (Apr 18)

Thank you for that David, it was really interesting to see such honesty , everyone will find different aspects of the discussion food for thought, for me it was the ' putting on a brave face' that

by David Fitz (Apr 17)

https://www.youtube.com/watch?v=rtiWZQhuZtg
I spent quite a lot of time last summer with Novartis about “See My Life” to show what living with CML really looks like. Novartis have taken quite a
Category: Uncategorised

Replies: 2

Last updated: 18 April 2026
Hazel on 13 April 2026

Category: Children & young people

Replies: 7

Last updated: 17 April 2026

Hi I'm new 👋🏼
by Hazel (Apr 17)

We are an hour from london (essex) and this would be fantastic we will definitely aim to get to this. Thanks David and I'd love to say hi in person. This group has helped a lot ☺️

by David Fitz (Apr 16)

Hazel,
If you are in London (presuming so, with the UCL coffee morning planned) then you might want to join our CML patient seminar in May.
You can register here:
https://www.hpccevent.com/
The

by Hazel (Apr 16)

Oh my, it's like you're in my brain!! I'm so glad your son's a lot more stable now, we're only in month 3 and everything is happening either really fast or like slow motion it's the craziest

by MomOfCML (Apr 15)

My son was diagnosed at 18. Not quite an adult, no longer a child. He'd just started university and was living at home. The first 6 months were a blur filled with blood tests, appointments and a
Category: Children & young people

Replies: 7

Last updated: 17 April 2026
Reilly9108 on 26 March 2026

Category: Side effects

Replies: 9

Last updated: 16 April 2026

Sprycel & Triglycerides
by bob guimond (Apr 16)

ann smith

please excuse my 1-finger typing.

I looked up my lipid profile in Dec 2025. my triglycerides improved to 51, my LDL improved from 240 to 180 and hdl improved from lo 50's to

by bob guimond (Apr 14)

Super DPA from swanson's.

by annsmith (Apr 13)

Hi Bob, just wondering if you could share what fish oil you used. My triglycerides have been going up on asciminib and don't want to take a prescription if I can avoid it.

thanks Ann

by bob guimond (Apr 2)

my triglycerides improved from 240 to 80. I started using a fish oil with DPA in the capsule, normal dose,in addition to the 1-2 capsules krill oil I had been taking. there are articles and AI info
Category: Side effects

Replies: 9

Last updated: 16 April 2026
Karinne on 10 April 2026

Category: Blood tests

Replies: 1

Last updated: 15 April 2026

Still undetected after 7.5 years without Sprycel
by JoeP (Apr 15)

Karinne you are a marvel to modern science. I am happy for you. Congrats on your past and future success! You are an inspiration to me.
Joe

by Karinne (Apr 10)

I want to share with you guys, my fellows CML, that I am STILL undetected after 7.5 years of TFR!!!!

My history: took Sprycel 100 mg for 4 years. Then I got a massive pleural effusion. I
Category: Blood tests

Replies: 1

Last updated: 15 April 2026
iffat on 14 April 2026

Category: Blood tests

Replies: 0

Last updated: 14 April 2026

Low platelets
by iffat (Apr 14)

Hello

I am a 10 years cml patient,being on 400mg imatinib, my pcr is under control log reduction is >3

About 9 months my platelets started to decrease,it is not a dramatical decrease
Category: Blood tests

Replies: 0

Last updated: 14 April 2026
sandy craine on 3 February 2021

Category: Treating CML

Replies: 2

Last updated: 14 April 2026

Discontinuation of TKIS in CML: when and for whom?
by jonnie turpie (Apr 14)

Hi David.

I'm sorry to hear of Sandy's passing.
Many thanks for your message and valuable current link.

Jonnie

by David Fitz (Apr 14)

Hi Jonnie,
Sadly Sandy passed away some time back (not from CML), but I will step in to help answer your question.
Since that post was made, there has been lots of progress on TFR. There is still a

by jonnie turpie (Apr 12)

Thanks for this update. are there any further updates? my hematologist and I are testing reducing Tki (asciminib) by 25 and now 50 % to assess the MMR and side effects and would be interested in any

by sandy craine (Feb 3)

A clear and thorough overview of the current data available from the clinical studies of TKI discontinuation and/or dose reduction.
Full article here
Sandy
This is quite an in-depth article so
Category: Treating CML

Replies: 2

Last updated: 14 April 2026
cmljax on 19 January 2026

Category: Uncategorised

Replies: 7

Last updated: 10 April 2026

Should I switch TKI's?
by Amanda Lax (Apr 10)

Hi, yes i might be!, watch this space. Ive been on asciminib for a few months, started on 80 mg, was lucky enough to have an appointment with an eminent Professor , organised by my Consultant, who

by cmljax (Apr 5)

So I have decided with my oncologist to switch to 40 mg asciminib once daily. My latest PCR was negative, so I am going to take a 30 day drug holiday and then start the asciminib.
Is anyone out

by David Fitz (Jan 21)

I was on 20mg of dasatinib before I stopped and tried TFR. 20mg seemed to be plenty for me to maintain MR4.5.
I take 80mg of asciminib now, once daily, which is the standard dose. We are thinking

by cmljax (Jan 20)

Also, what was your daily dose of dasatinib right before the switch?
Category: Uncategorised

Replies: 7

Last updated: 10 April 2026
scuba on 21 March 2026

Category: Treating CML

Replies: 5

Last updated: 27 March 2026

TKI selection trends - A discussion with Dr. Jorge Cortes
by David Fitz (Mar 27)

Dasatinib anhydrous might also be an option, if available. It’s a reformulation of dasatinib that doesn’t need stomach acid.
https://www.nature.com/articles/s41375-023-02045-1

by scuba (Mar 25)

The current FDA label for SPRYCEL (dasatinib) explicitly states:
“Do not administer H₂ antagonists or proton pump inhibitors with SPRYCEL. Consider the use of antacids in place of H₂ antagonists or

by Nimbus2 (Mar 25)

I wonder. If a gastric acid-reducing agent reduces the absorption of dasatinib, is the effective dose of dasatinib also reduced? I take a PPI many hours after taking dasatinib, but if I were to take

by Amanda Lax (Mar 23)

Very Interesting, thank you for posting.
Category: Treating CML

Replies: 5

Last updated: 27 March 2026
Rayyana123 on 24 March 2026

Category: Blood tests

Replies: 1

Last updated: 27 March 2026

My BCR went up...
by bob guimond (Mar 27)

being sick/an infection can cause the spike.

by Rayyana123 (Mar 24)

Hey ! I have been doing good with my BCR decreasing while taking 20 mg of Dastanib. I have been sick a lot lately and at my appointment they stated it had went up from 0.0091 to 0.0288. Now my
Category: Blood tests

Replies: 1

Last updated: 27 March 2026
Ontasigna on 14 March 2026

Category: Blood tests

Replies: 3

Last updated: 20 March 2026

BCR ABL - 0.014 after 3 years
by JoeP (Mar 20)

I am with Alistair, your 0.014 reading can be a blip. I wouldn’t be surprised if you go back to undetectable. Sorry if my first response was a little direct but for me falling out of undetectable

by AlastairC (Mar 19)

0.014% is within the range of repeatability of the test. I wonder if the next test might revert to undetectable - think it might have been worth waiting until your next test to see if an upward

by JoeP (Mar 16)

I had a similar experience with Nilotinib. I went almost two years undetected, at the mark of the first year I dropped my dose by 50mg / day. Right at the 2 year mark it went up. Which tells me my

by Ontasigna (Mar 14)

Hi all
After 3 years of Undetection, my result suddenly showing 0.014
I had reduced the dose to 200mg bid. I started back to 400mg bid now
Is this temperory? Or resistance/mutation. Kindly help with
Category: Blood tests

Replies: 3

Last updated: 20 March 2026
MartinZA on 6 March 2026

Category: Treating CML

Replies: 3

Last updated: 17 March 2026

Involuntary TFR attempt - update after 42 months
by MartinZA (Mar 17)

Thank you so much Joe and David! I really appreciate the kind messages and the support. All the best to you.

by David Fitz (Mar 7)

This is great to hear, Martin! I think at this stage you are in the “unlikely to relapse” category, and if you make it to 5 years you get into the “extremely unlikely to relapse” group.
Thank you

by JoeP (Mar 7)

Congrats Martin! I think you’re onto something.

by MartinZA (Mar 6)

Hi everyone
I hope everyone is doing well and moving onwards to full recovery steadily. This is just my latest update about my attempt at stopping treatment. For those who don't know my story, I
Category: Treating CML

Replies: 3

Last updated: 17 March 2026
David Fitz on 30 April 2019

Category: Uncategorised

Replies: 38

Last updated: 14 March 2026

Dasatinib dose reduction not going quite to plan
by Jersey (Mar 14)

Glad to hear resistance didn’t turn out to be the case in practice. Thanks

by Jersey (Mar 13)

Thanks yes I was thinking of 40mg as my next request. I’ll be posting my new numbers next week. I appreciate your advice.

by Jersey (Mar 13)

Thanks Dave I think your advice to hang with 50mg for a bit is a good one. I’ll know next week where my numbers are now. Fingers crossed 🤞

by David Fitz (Mar 12)

I don’t think the resistance concept is wildly different to a bacterial analogy. The worry, some years back, was when the DESTINY trial was launched. The concern was that if imatinib was reduced to
Category: Uncategorised

Replies: 38

Last updated: 14 March 2026
CarlaWild on 11 March 2026

Category: Uncategorised

Replies: 2

Last updated: 13 March 2026

Massive Spike in Liver Enzymes
by Felix (Mar 13)

Hi, this has happened to me skin and eyes went yellow got painful trapped wind in my chest ,nothing to do with meds or CML in my case .Had ultrasound and found I had lots of stones in my liver had

by JoeP (Mar 12)

Carla I am like you but do try not to let your thoughts get the best of you if you can. Stay focused for problem solving. Do what you can. Look at all of your intake and analyze its effect on the

by CarlaWild (Mar 11)

Morning,
Please can someone share their experience? I’ve been on Imatinib 20 months now, LFT’s have always been good with my value usually sitting at around 40 for my ALT enzyme. I had my bloods in
Category: Uncategorised

Replies: 2

Last updated: 13 March 2026
SageH on 27 December 2025

Category: About CML

Replies: 4

Last updated: 22 February 2026

Parent Questionnaire: Talking to Children About a CML Diagnosis
by David Fitz (Feb 22)

I took the option of being open to my little kids from when they could understand much. Even now, they (twins) are only 7. They don’t know words like cancer, or leukaemia but they know daddy’s blood

by Wstevenson (Feb 21)

Every family and every person is different, but I believe its a opportunity to model for children how to handle adversity. Life is not easy but how we respond makes all the difference.

by SageH (Jan 24)

It is absolutely a personal choice and obviously it depends on the age of your children and their level of maturity. Personally, I waited three years to tell my son, when he turned 14 years old.

by alexmcpee (Jan 24)

I’d be happy to do it for you however it’s been 8 years since my diagnosis and I’ve managed so far to keep it from my kids. They’re now 12 and 15.
I will tell my kids one day when they’re
Category: About CML

Replies: 4

Last updated: 22 February 2026
mamodei on 20 November 2022

Category: Side effects

Replies: 9

Last updated: 21 February 2026

Sprycel and depression
by Wstevenson (Feb 21)

I'm sorry to hear you are struggling. If your side effects are that debilitating I would definitely talk to your oncologist about lowering your dose more quickly or trying a different TKI. The good

by Polineczka (Feb 18)

Thanks, I was actually coping quite well as long as I was physically fit — I went to dance classes and walked a lot. But then muscle pain started, getting stronger and stronger, and now even

by Wstevenson (Feb 18)

Hello,

I have been on an antidepressant for many years. It has probably saved my life as much as the TKI has (I'm on sprycel, but the depression long preceded my cml).

That said, all

by Polineczka (Feb 17)

Hi. Since the beginning of my treatment I’ve been struggling with anxiety, but for about the last six months I haven’t been coping anymore and depressive episodes have appeared. I’m under the care
Category: Side effects

Replies: 9

Last updated: 21 February 2026
suvankardas on 7 February 2026

Category: Getting help

Replies: 1

Last updated: 18 February 2026

Ponatinib side effects
by 3oK@ (Feb 18)

Depending on where you are with blood counts and BCR-ABL %, you may consider going back to Imatinib and adding 200mg Mebendazole, which seems to be very effective against all CML mutations,

by suvankardas (Feb 7)

Has started Ponatinib 15 mg from 22nd December 25. Initially no side affects. Only elevated pancreatic enzymes. But now when almost 1.5 months the blood sugar and blood pressure is alarmingly high
Category: Getting help

Replies: 1

Last updated: 18 February 2026
Tomeocat on 10 February 2026

Category: Food & fitness

Replies: 3

Last updated: 12 February 2026

Decrease leukemia without TKI?
by Tomeocat (Feb 12)

Good morning John, thank your reply..

I have started taking the probiotics capsules a month ago. Due to my lifestyle I am unable to take them everyday. They should be taken during breakfast

by johnw1001 (Feb 11)

Regarding your gastric and colonic issues may I suggest that you try probiotics.

There is a whole world of the immune system, inflammation and the gut -most tkis and perhaps also cml itself

by David Fitz (Feb 10)

I don't believe the dasatinib is still active in your body. It has a short half-life and is almost completely flushed out of your system within 24 hours.
If you look back on this forum you'll find a

by Tomeocat (Feb 10)

Good morning,

I was diagnosed with CML back in July 2023. I took Imatinib until April 2024 and then switched to Desatinib due to the side effects. Everything was going very well until July
Category: Food & fitness

Replies: 3

Last updated: 12 February 2026
David Fitz on 22 January 2026

Category: Uncategorised

Replies: 6

Last updated: 7 February 2026

New series of videos about "Understanding CML"
by David Fitz (Feb 7)

Thanks Martin! Good to get your feedback. We really tried to make them short, to the point, friendly, and not overwhelming.
We plan to make a few more over the coming months such as drug / drug and

by MartinZA (Feb 3)

Hi David
I think this is a great initiative - thank you so much! Having watched some of the videos I can honestly say that they would have helped me a lot when first diagnosed. They're informative

by joey (Jan 26)

Hi David
i have watched around half of the videos and they are extremely informative. I have read a fair bit about CML since being diagnosed and from a personal perspective I found these videos

by David Fitz (Jan 24)

Hi Amanda,
I’m absolutely delighted to hear this. It’s exactly the tone we were going for - good amount of information, delivered by experts in a friendly way and to be understandable to patients.
Category: Uncategorised

Replies: 6

Last updated: 7 February 2026