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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
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
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
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
joey on 13 February 2025

Category: Uncategorised

Replies: 6

Last updated: 24 February 2025

Imatinib - Kidney issues - Creatinine high, EGFR low
by joey (Feb 24)

thanks Phillip, much appreciated

by PhilipDavid (Feb 23)

Hi. Joe.
The calculation for the kidney function test is based on your creatine level which is raised on imatinib. The last test I had I drank 2 litres of water to get rid of the creatine in my

by joey (Feb 19)

thanks. that's interesting to hear -so have your creatine levels been high as well as having the low efgr- but you have been able to remain on imatinib? i am due to have a kidney scan soon but will

by PhilipDavid (Feb 19)

I was diagnosed 10 years been on imatinib 400 mg per day since diagnosis.. I too have the same issue with the kidney function tests. My EGFR - was coming back at 49% and the locum gp telling me
Category: Uncategorised

Replies: 6

Last updated: 24 February 2025
Theresa Healy on 18 February 2025

Category: Treating CML

Replies: 5

Last updated: 24 February 2025

Imatinib & autoimmune condition
by JoeP (Feb 24)

Let us know if you discover anything.

by Theresa Healy (Feb 22)

Thank you, that's really interesting. I hadn't even thought about how foods and drinks might interact with the TKI.

by JoeP (Feb 22)

For years before coming to this forum I suffered from many side effects of either the disease or the treatment not knowing they were the cause or at least part of it. What I have learned over the

by Theresa Healy (Feb 19)

Hiya, in all the years I've had this autoimmune condition I've never had the blisters on my body, only inside my mouth but it's escalated and I now have them on my body so thinking it can only be
Category: Treating CML

Replies: 5

Last updated: 24 February 2025
rsgiles on 21 February 2025

Category: Children & young people

Replies: 0

Last updated: 21 February 2025

Help with CBC test
by rsgiles (Feb 21)

Hi, I am worried about my last CBC test. One of the tests called Gran% is 77.8. It also said that it is a high number. When I looked it up I saw that it means there is a serious infection and now Im
Category: Children & young people

Replies: 0

Last updated: 21 February 2025
NishKatu on 15 January 2025

Category: Blood tests

Replies: 4

Last updated: 9 February 2025

Concerning BCR-ABL1 upward
by JoeP (Feb 9)

Your numbers are great. I agree with Alistair that the .001 reading could be suspect but that said you cruised ahead through MMR in record time.

You might be able to achieve MR5 OR CMR soon.

by suvankardas (Feb 9)

It’s normal I think. I am from India and being treated in Chennai. I have attached my progress so far. It’s like sea wave up down is normal. I am going to have another test next week.

by NishKatu (Jan 16)

Thank you for your feedback, I feel relieved. My next appointment with oncologist is due tomorrow, will see what his thought on this

by AlastairC (Jan 15)

I wouldn't worry, but would suggest you get another test in 3 months rather than 6. As an 18 year veteran of these test results, I'd say that your July 2024 result which showed a 2 log drop in 2
Category: Blood tests

Replies: 4

Last updated: 9 February 2025
cml1234 on 6 February 2025

Category: Getting help

Replies: 3

Last updated: 9 February 2025

help:How to find all posts by a specific ID?
by David Fitz (Feb 9)

If it’s a one-off for a particular user, I can try.
David.

by cml1234 (Feb 7)

That's still too bad, if I want to access all the posts of a certain user, can you, as an administrator, help me?

Thanks.

by David Fitz (Feb 6)

Hi there,
Unfortunately outside of our admin tools that is not a feature our current forum platform supports. It's frustrating, as I know this would be a nice feature to have.
David.

by cml1234 (Feb 6)

When browsing forums, I often come across certain IDs that share excellent self-management experiences, and some have even TFR’d. I’d like to view all posts from these IDs to learn about their
Category: Getting help

Replies: 3

Last updated: 9 February 2025
MomOfCML on 28 October 2024

Category: Blood tests

Replies: 8

Last updated: 20 January 2025

Now what?
by MomOfCML (Jan 20)

An update:
His latest tests have come back, and the blip was indeed a blip. Down to 0.2398, Log 2.62. So he continues on the slow but steady progress to the magic 0.1/Log3.
Thanks again for all your

by Taper11 (Nov 19)

Your son has tons of options if you decide for a switch. 4 other TKIs and 3 in trials at the moment.
As many agree on here, it's probably not needed at the moment. Imatinib is the slowest, least

by alexmcpee (Nov 2)

Hi there
Your son like me and many many other "youngsters" on here take longer to respond.
The MMR milestone causes a lot of unnecessary worry, I like your son took 2.5 years to hit MMR. I hang

by JoeP (Nov 2)

I can’t speak for others but I too felt uncomfortable for many years. But over time you get accustomed to the condition and, it becomes routine.
Category: Blood tests

Replies: 8

Last updated: 20 January 2025
cgovind on 2 December 2024

Category: Side effects

Replies: 2

Last updated: 4 January 2025

Dasatinib and leg pain
by Felix (Jan 4)

Hi, your Sons bloods are looking good ,time to reduce his dose ,he doesn’t need 70 mg .Its toxic stuff .Lower dose will help with any side effects .

by johnw1001 (Dec 28)

First of all it is not unusual to experience bone and muscular pains from a number of the tkis in the first 12 months of treatment-it is often quoted as a positive sign that the drug is reducing the

by cgovind (Dec 2)

Hi! My son has been on Dasatinib 70mg for the 5 months. His Q-PCR reading after 3 months was 0.43% (it had gone up marginally to 1.8% with imatinib which is why we shifted to Dasa). Over the last
Category: Side effects

Replies: 2

Last updated: 4 January 2025
suvankardas on 13 December 2024

Category: Getting help

Replies: 1

Last updated: 23 December 2024

No able to reduce weight
by JoeP (Dec 23)

Suvankardas,
I don’t know if losing weight is harder for us CML folk but I can tell you in general losing weight is not easy. Or should I say, losing weight is easy, keeping it off is difficult. I

by suvankardas (Dec 13)

Since my diagnosis in Nov 22 I have been on Imatiniv 200 two times a day. Recently my HBA1c level has increased to 7.5. Since then I am working hard on my fitness and trying to reduce my weight by
Category: Getting help

Replies: 1

Last updated: 23 December 2024
JoeP on 29 November 2024

Category: Treating CML

Replies: 6

Last updated: 23 December 2024

Suddenly dropped out of undetected status
by JoeP (Dec 23)

Thanks for asking Paul. Glad to hear you are out of the hospital. Keep the faith. Like my wife always says to me, it never happens the way you think. Your wife Denise seems like a lovely person, you

by rambler (Dec 23)

Hi Joe,

Hope you are well. Have been meaning to ask, how did your doctors appointment go on the 9th December.

Are you trying another tki ?

I was discharged after 15 nights in

by JoeP (Dec 3)

Paul when do you go see your doc again? It must be this week. I am eager to hear what transpires. There’s still a lot left to kick in that can.
Hang in there bro,

Joe

by rambler (Dec 2)

Hello Joe,
It’s Mrs Rambler here. I really love your ‘rodeo’ analogy. Thanks for the big smile.
I have an analogy I quite like to use, that comes from financial crisis days. We sometimes heard
Category: Treating CML

Replies: 6

Last updated: 23 December 2024