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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)

Do you have links to any other specific agendas or have they not been decided yet? I can't find any detail of the content anywhere online. I understand it was moved at the last minute from 16th to

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: 4

Last updated: 23 March 2025

TFR population data
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

by Justine (Mar 20)

Thank you Martin and David for your replies. I will report back my experience. With luck I’ll have something to say midsummer.
Take care!
Justine

by MartinZA (Mar 19)

Hi Justine,
Like you, I wish there were more statistics on TFR, but I guess the long-term success rates haven't been established. As David says, I had to try it accidentally due to drug side

by David Fitz (Mar 18)

Hi Justine,
We barely have good registers of CML patients in any country, so while we have good data from many clinical trials around TFR there is less centralised “real world” data available.
TFR
Category: Treating CML

Replies: 4

Last updated: 23 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
MartinZA on 21 January 2025

Category: Treating CML

Replies: 10

Last updated: 19 March 2025

29 months in TFR - my miracle continues
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

by kat73 (Feb 28)

Martin, congrats! I just tried TFR, having all the requisite criteria and profile, but alas, at my first check-in at 5-1/2 weeks I had zoomed from my usual 0.002 to 0.333! A number I have,

by MartinZA (Feb 9)

Thanks Wstevenson, Sav_5 and David for the kind words and support!
cml1234, thank you too for the wishes. To answer your question, I'll be 47 in May and was diagnosed in November 2015 aged 37. I

by cml1234 (Feb 7)

Congrats and good luck with getting better and better.
May I ask how old you are now and how many tki's you have you taken？
Category: Treating CML

Replies: 10

Last updated: 19 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
Suboptimal_ on 11 March 2025

Category: Treating CML

Replies: 1

Last updated: 13 March 2025

Sudden BCR-ABL plateau/rise after only 7 months on imatinib
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: 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
johnw1001 on 3 December 2024

Category: Treating CML

Replies: 2

Last updated: 4 March 2025

CML (Chronic Myeloid Leukemia)-A survival guide for patients
by joey (Mar 4)

thanks for highlighting this John

by Patch (Mar 4)

Hi John,
Thank you for letting us all know about this book, I hope you are keeping well. I will be ordering a copy.
Best wishes

Patch

by johnw1001 (Dec 3)

I have found a book published by Dr Bhratri Bhushan that is a good read especially if you are new to CML .The section on managing the side effects of TKIs I found particularly useful.I found the
Category: Treating CML

Replies: 2

Last updated: 4 March 2025
Amanda Lax on 27 October 2024

Category: Side effects

Replies: 6

Last updated: 1 March 2025

Imatinib Sides
by Amanda Lax (Mar 1)

Hi, thank you for taking the time to input on this subject. Im now off Imatinib, the eye issues were too much, along with really bad skin lesions. Im hopefully moving forward now, i hope you are

by kat73 (Feb 28)

Amanda - The puffy eyes never go away on imatinib. Lowering the dose helps a little. Switching to dasatinib makes it about 50% better. It has nothing to do with ankles or bloating; it's very

by Amanda Lax (Dec 2)

Hi John, and thank you for that very comprehensive and useful reply, and indeed, reassurance. I can see (literally) that the eye stuff is part of my getting used to long term Imatinib,

by johnw1001 (Dec 1)

Hi ,

It is a fairly common side of imatinib to suffer various forms of eye disturbance.The product literature cites the incidence as probably about one in ten of patients. The most common
Category: Side effects

Replies: 6

Last updated: 1 March 2025
Jonty R on 22 May 2024

Category: Treating CML

Replies: 27

Last updated: 28 February 2025

Changing to Second Gen TKI's
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

by Jonty R (Jan 4)

Thanks for this insight James - very helpful. Good luck with the ongoing treatment.

Best wishes

Jon

by JS001 (Jan 3)

Hi Jonty,
I'm pleased your BCR-ABL result is moving in the right direction and that you've nearly reached MMR. Although I'm sorry to hear hear that your tinnitus is still present. If this is
Category: Treating CML

Replies: 27

Last updated: 28 February 2025
Amanda Lax on 24 January 2025

Category: Uncategorised

Replies: 10

Last updated: 28 February 2025

Still learning, Bosulif advice
by 3oK@ (Feb 28)

Hi Amanda,
I’m sorry to hear you too experienced adverse effects and had to pause. Maybe lower dose works better for you. I‘ve been also thinking of maybe alternating between e.g. 2 months Dasatinib

by Amanda Lax (Feb 27)

Hi Zoran, yeah that all sounds a bit of a mess, i can only hope you settle sooner rather than later, we will keep in touch i hope. I cant give you any numbers, to be quite honest my Consultant

by 3oK@ (Feb 27)

Hi Amanda,
I haven’t recovered yet, so I’m taking Dasatinib to bring wbc down as it doesn’t affect platelets, and something for uric acid which is now normal.
My platelets started slowly recovering

by Amanda Lax (Feb 27)

Hi Zoran, its been a while, just wondered how you are doing now on Botulif, i have had a bit of a rocky road. Will wait to hear from you. Best wishes.
Category: Uncategorised

Replies: 10

Last updated: 28 February 2025
YianniA on 20 February 2025

Category: Treating CML

Replies: 4

Last updated: 27 February 2025

Has anyone used Acminib.
by YianniA (Feb 27)

Thanks Zoran. I have had some water retention with Dasatanib even at 50mg. I had issues for two years with sodium dropping fast. Finally figured out with a nephrologist to lower water intake and

by YianniA (Feb 27)

Thank you Christine. I am in the U.S. and they really want to push this drug but requires a lot of testing which scared me.

by Christine R (Feb 21)

I have been on Asciminib for 8 months now on the basis it is safer than most of the other TKIs. I haven't had any problems at all. I was taken off Nilotinib due it effecting my thyroid and it has

by 3oK@ (Feb 21)

Hi John,
I was on asciminib 80 mg for 5 months and had to stop it due to massive fluid retention around my waist which started obstructing breathing.
Once I stopped it, I lost 10 kg in 1 month.
I
Category: Treating CML

Replies: 4

Last updated: 27 February 2025
Kathyp on 26 February 2025

Category: Uncategorised

Replies: 1

Last updated: 26 February 2025

Platelet count
by AlastairC (Feb 26)

This page can be found under "About CML" above. https://cmlsupport.org.uk/section/normal-blood-counts Platelet normal range is quoted at 150-450. Hope that helps.

by Kathyp (Feb 26)

Hi all, just a quick question, is 443 platelet count high ,I’ve just had a routine blood test by my gp and my results were put on my medical app , it said abnormal but doesn’t need action ,
Category: Uncategorised

Replies: 1

Last updated: 26 February 2025
rsgiles on 23 February 2025

Category: Blood tests

Replies: 1

Last updated: 26 February 2025

How fast
by scuba (Feb 26)

A Gran % of 77.8 all by itself without other blood count data can mean anything. You could be responding to an infection (you may not even be aware) or some other trigger. Granulocytes are

by rsgiles (Feb 23)

Hi I am worried about my pcr test. My last pcr was 0.004 which was down a little from the one before that. On my last cbc test there was a test I noticed that was GRAN%77.8 high. I am worried that
Category: Blood tests

Replies: 1

Last updated: 26 February 2025