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David Fitz on 14 March 2025

Category: Uncategorised

Replies: 1

Last updated: 17 March 2025

PinnedLondon Haematology Patients & Carers Congress - 9th May 2025
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: 1

Last updated: 17 March 2025
Justine on 15 March 2025

Category: Treating CML

Replies: 7

Last updated: 25 April 2025

TFR population data
by Vikram (Apr 25)

How will we know?
e13a2 / e14a2

by JoeP (Mar 29)

I don’t know of any tracking for TFR but I recently fell out of undetectable status and learned that there are 2 common BCR:ABL types, e13a2 and e14a2. Turns out that type e13a2 has less favorable

by Justine (Mar 26)

Thank you Alastair, I will have a look.

Thanks!

by AlastairC (Mar 23)

Hi Justine, Good luck. I think I may have pointed you at this video before, but if not you might find it useful to look at https://cmlsupport.org.uk/videos/reducing-or-stopping-treatment-who-and
Category: Treating CML

Replies: 7

Last updated: 25 April 2025
johnw1001 on 25 April 2025

Category: Uncategorised

Replies: 0

Last updated: 25 April 2025

Covid vaccination Spring 2025
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: 0

Last updated: 25 April 2025
CarlaWild on 22 April 2025

Category: Reproductive health

Replies: 4

Last updated: 24 April 2025

Surgery whilst on Imatinib
by CarlaWild (Apr 24)

Thank you for replying.
Did the anaesthetist raise any concerns over it? I’m worried that’s it’s ‘elective’ surgery they may all argue against me having it because no one seems to understand the

by David Fitz (Apr 24)

I had a fairly big surgery about 10 years ago - the kind you need to stay in the hospital for a week. I was taking dasatinib, and was advised to just keep taking it throughout. It all was fine.

by CarlaWild (Apr 23)

Thank you for your reply, I did think a month sounded too excessive considering that Imatinib only has an 18 hour half life. My consultant has said that as my bloods are ok he’s not concerned at all

by JoeP (Apr 23)

I had oral surgery a few years ago and it was advised that I stopped taking the medication 5 days prior. I was on Imatinib at the time. To me a month sounds somewhat excessive but depending on the
Category: Reproductive health

Replies: 4

Last updated: 24 April 2025
Sd on 21 April 2025

Category: Side effects

Replies: 2

Last updated: 23 April 2025

Imatinib and Tetanic Contractions
by JoeP (Apr 23)

I never knew that those symptoms were referred to as Tetanic contractions. I had a lot of that on Imatinib. Ya they are the worst. I had to watch how vigorously I worked out at the gym. Probably

by Buzzm1 (Apr 22)

Sd, if you haven't yet reduced your Imatinib dosage, you should certainly begin to do so.
Buzz

by Sd (Apr 21)

I have been on imatinib for 5 years. My BCR/ABL is good. No detectable disease for the past 2 years. However, I have developed tetanic contractions in my legs and feet. This occurs in the morning
Category: Side effects

Replies: 2

Last updated: 23 April 2025
Evie on 27 March 2025

Category: Uncategorised

Replies: 1

Last updated: 21 April 2025

Supplements
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: 1

Last updated: 21 April 2025
cgovind on 17 April 2025

Category: Side effects

Replies: 2

Last updated: 19 April 2025

High magnesium, low D3 and TKI
by Felix (Apr 19)

70 mg for a young boy is a hell of a lot and for a long time ,no way would I take that much as an adult .You really need to get that reduced it’s too toxic .His bloods must be low enough by now

by PhilipDavid (Apr 19)

Hi. I was diagnosed with cml in 2015 had similar issues check this out
You’re right to be paying attention to this—your observations are sharp. Typically, low vitamin D3 and low magnesium often

by cgovind (Apr 17)

My son (12 yo) has been on Dasatinib 70mg for the last year, after having switched over from Imatinib. His Vit D3 levels has been persistently low, which we address through monthly dose of 60k
Category: Side effects

Replies: 2

Last updated: 19 April 2025
56x11 on 18 April 2025

Category: About CML

Replies: 0

Last updated: 18 April 2025

ASXL1 Mutation
by 56x11 (Apr 18)

Hello,
How many out there have this mutation?
For those who have or had it, I have several questions.
1) How have you and your team addressed this in general?
2) Did you experience TKI resistance?
Category: About CML

Replies: 0

Last updated: 18 April 2025
MartinZA on 21 January 2025

Category: Treating CML

Replies: 13

Last updated: 15 April 2025

29 months in TFR - my miracle continues
by hannibellemo (Apr 15)

Martin, congratulations! I love hearing stories of successful TFR, especially when the background story is as unlikely for TFR success as yours has been. I'm wishing for you many more years of TFR

by hannibellemo (Apr 15)

@kat73, I'm so sorry to read this! Like you, I had a rapid PCR rise when I stopped dasatinib for my pleural effusions, so I wasn't particularly hopeful that TFR would be successful—and it wasn't. 4

by kat73 (Mar 25)

Will do, Martin, and thanks.

Kat

by MartinZA (Mar 19)

Hi kat,
Sorry, I only saw this post now... Thank you so much for the kind words and encouragement. I'm so sorry that TFR wasn't possible for you, but I'm pleased you've been able to stay positive
Category: Treating CML

Replies: 13

Last updated: 15 April 2025
Jonty R on 22 May 2024

Category: Treating CML

Replies: 29

Last updated: 29 March 2025

Changing to Second Gen TKI's
by JS001 (Mar 29)

Hi Kat,
Thanks for your reply and the useful advice.
I shall continue to strive to reduce my dose to 20mg at the earliest opportunity.
Take care.
James

by kat73 (Mar 25)

James - I'm glad you're doing well on 50 mg. To answer your question, unlike my experience with imatinib when reducing from 400 even just down to 300 mg made a significant improvement in side

by JS001 (Feb 28)

Hi Kat,
Thanks for your reply.
My goal is to reduce my dose of Dasatinib to 20 mg at some point.
I was initially on 100mg Dasatinib as a 2nd line TKI in 2017/18 for 10 months, but never reached

by kat73 (Feb 28)

James - When I researched and was encouraged on the old LLS forum in the US to bring my dasatinib dosage down to 20 mg, my oncologist resisted heartily. I emailed and got really nice responses from
Category: Treating CML

Replies: 29

Last updated: 29 March 2025
Suboptimal_ on 11 March 2025

Category: Treating CML

Replies: 2

Last updated: 26 March 2025

Sudden BCR-ABL plateau/rise after only 7 months on imatinib
by suvankardas (Mar 26)

My situation was exactly same as yours. I had my % dropped to .13, but suddenly on the next test it increased to .16 and then after 6months it again dropped to .07. So didn’t worry much. It’s normal

by PhilipDavid (Mar 13)

Hi. I have been on imatinib for 10 years. In my first two years the PCR did fluctuate. I finally got below 0.1 and it’s stayed quite stable. Just get your drs to recheck.
Also different lads

by Suboptimal_ (Mar 11)

Diagnosed and started on imatinib late May 2024, BCR-ABL was dropping nicely until December when I got down to 0.139% (I.S.).
Then in February this year (two months later), it was still hanging
Category: Treating CML

Replies: 2

Last updated: 26 March 2025
Sd on 7 March 2024

Category: Uncategorised

Replies: 1

Last updated: 20 March 2025

CBD
by Kroolutec (Mar 20)

I’ve heard mixed experiences with CBD and interactions with medications, so it’s always good to check with your doctor first. I tried https://www.exhalewell.com/thc-disposable-vape-pens/ once, and

by Sd (Mar 7)

I have been away from this forum for a while. Any one using CBD oil?
Category: Uncategorised

Replies: 1

Last updated: 20 March 2025
mozart8 on 17 March 2025

Category: Side effects

Replies: 3

Last updated: 19 March 2025

sprycel/dasatanib and heart issues
by MartinZA (Mar 19)

Not the same issue as yours, but I had to come off dasatinib 4 years after starting it because I developed lymph node swelling. Two in my neck were the size of a golf ball. Upon stopping dasatinib

by ColoradoGuy (Mar 18)

Could this be a non TKI-related issue? Not sure of your age but a lot of things can be a factor. I was under the impression that Nilotinib could potentially affect the heart, not Dasatinib.

by mozart8 (Mar 18)

update, was told by cardio yesterday that i will need a pacemaker for this condition

by mozart8 (Mar 17)

hello, i was diagnosed with CML in december 2018 and started dasatanib 100mg on december 26, 2018. i met all the milestones according to my oncologist and got to MRR in 2020. i joined this forum
Category: Side effects

Replies: 3

Last updated: 19 March 2025
SS86 on 12 March 2025

Category: Side effects

Replies: 1

Last updated: 16 March 2025

Side Effects of Nilotinib on Liver
by Dustylloyd (Mar 16)

Ss86
Hi,
Strangely my liver was flagging up on my blood checks, and the doctor always asked if I drank excess alcohol, I haven’t drunk any alcohol since my cml diagnosis over 10 years ago, luckily

by SS86 (Mar 12)

Hi ,
Is anyone facing issues with liver who’s on Nilotinib.
Since September the values in liver function test has been on higher side.
We shifted to Nilotinib 300 BD in end of 2023 after multiple
Category: Side effects

Replies: 1

Last updated: 16 March 2025
Patch on 14 March 2025

Category: Uncategorised

Replies: 0

Last updated: 14 March 2025

cataract surgery & Teeth removal
by Patch (Mar 14)

Hi,

I wonder if anyone else has come across any of these problems..

I recently went along to have my eyes tested at Boots the chemist and was informed I need to have cataract's in both
Category: Uncategorised

Replies: 0

Last updated: 14 March 2025
cmljax on 12 March 2025

Category: Uncategorised

Replies: 1

Last updated: 13 March 2025

TKI Withdrawal Syndrome (WS)
by MartinZA (Mar 13)

Hi there
I'm not sure if this helps but I also had joint pain and muscle pain while on imatinib, but this was mainly in my legs and arms, especially knees, shoulders and elbows. When I stopped the

by cmljax (Mar 12)

I was Dx in 2016 and started on 200 mg 2x/day. Had terrible side effects but reach MMR in less than 6 months, so started a series of dose reductions down to 100 mg 1x/day. Attempted TFR mid-2020
Category: Uncategorised

Replies: 1

Last updated: 13 March 2025
Santa on 24 February 2025

Category: Side effects

Replies: 2

Last updated: 11 March 2025

Knee pain after 5 years on Imatinib
by Mia (Mar 11)

Hello Santa, your journey sounds very similar to mine though I am quite a bit older I am 74. I was always active a gym rat but nothing extreme. I was diagnosed in 2021 and put on Dasatinib.Leg pain

by Dustylloyd (Mar 11)

Hi Santa,
Knee pain can set in at any age,osteoarthritis could be a cause for your pain, I have just started getting pains in the last 6/7 months but I’ve been on tki medication for the last 10

by Santa (Feb 24)

Hello everyone! I am almost 5 years on Imatinib 400mg (been hovering between 0,003 and few undetectables for the last maybe 3,5/4 years) and I am soon to be 39 y.o. A few month ago I started to
Category: Side effects

Replies: 2

Last updated: 11 March 2025
snowman 35 on 10 March 2025

Category: Treating CML

Replies: 0

Last updated: 10 March 2025

Wbc
by snowman 35 (Mar 10)

Hi everyone!

I have noticed that my wbc are in normal range(and every type of wbc) but a lot lower than usually...Before six months I had 4.4 k/μl and now I have 4.8k/μl.

Is this
Category: Treating CML

Replies: 0

Last updated: 10 March 2025
bdmemphis on 4 January 2025

Category: Side effects

Replies: 13

Last updated: 9 March 2025

Anyone else experience cognitive/memory issues while on TKIs?
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

by Wstevenson (Jan 25)

Brown,

After a year and a half on imatinib I developed fatigue and brain fog. After midday it was sometimes difficult to think at all. Given that I need to use my brain at work, that led me to
Category: Side effects

Replies: 13

Last updated: 9 March 2025
sol on 7 March 2025

Category: Blood tests

Replies: 2

Last updated: 9 March 2025

Very different numbers for BCR-ABL1/ABL1 from different labs
by JoeP (Mar 9)

I agree with RC, a FISH is typically used to see if you achieve a cytogenic response. Although much more invasive, it is probably better at handling the larger number of copies. But also like RC

by RC Kirk (Mar 7)

I believe that the PCR test is less accurate during early treatment until you achieve a complete cytogenetic response. You could get a karyotype and/or FISH test to corroborate the PCR results, but

by sol (Mar 7)

Hello all,

I was diagnosed with CML in November 2024, and am now three months into my treatment. As I'm not on insurance, I was able to get tested across three different labs on my own dime
Category: Blood tests

Replies: 2

Last updated: 9 March 2025